House of Commons Health Committee

NHS Continuing Care

Sixth Report of Session 2004–05

Volume II

Oral and written evidence

Ordered by The House of Commons to be printed 5 April 2005

HC 399-II Published on 3 May 2005 by authority of the House of Commons London: The Stationery Office Limited £16.50

The Health Committee

The Health Committee is appointed by the House of Commons to examine the expenditure, administration, and policy of the Department of Health and its associated bodies.

Current membership Mr David Hinchliffe MP (Labour, Wakefield) (Chairman) Mr David Amess MP (Conservative, Southend West) John Austin MP (Labour, Erith and Thamesmead) Mr Keith Bradley MP (Labour, Manchester Withington) Simon Burns MP (Conservative, Chelmsford West) Mrs Patsy Calton MP (Liberal Democrat, Cheadle) Jim Dowd MP (Labour, Lewisham West) Mr Jon Owen Jones MP (Labour, Cardiff Central) Siobhain McDonagh MP (Labour, Mitcham and Morden) Dr Doug Naysmith MP (Labour, Bristol North West) Dr Richard Taylor MP (Independent, Wyre Forest)

Powers The Committee is one of the departmental select committees, the powers of which are set out in House of Commons Standing Orders, principally in SO No 152. These are available on the Internet via www.parliament.uk.

Publications The Reports and evidence of the Committee are published by The Stationery Office by Order of the House. All publications of the Committee (including press notices) are on the Internet at www.parliament.uk/parliamentary_committees/health_committee.cfm A list of Reports of the Committee in the present Parliament is at the back of this volume.

Committee staff The current staff of the Committee are Dr David Harrison (Clerk), Keith Neary (Second Clerk), Laura Hilder (Committee Specialist), Christine Kirkpatrick (Committee Specialist), Frank McShane (Committee Assistant), Mr Darren Hackett, (Committee Assistant), and Rowena Macdonald (Secretary).

Contacts All correspondence should be addressed to the Clerk of the Health Committee, House of Commons, 7 Millbank, London SW1P 3JA. The telephone number for general enquiries is 020 7219 6182. The Committee’s email address is [email protected].

Footnotes In the footnotes of this Report, references to oral evidence are indicated by ‘Q’ followed by the question number. Written evidence is cited by reference to Volume II of this Report, in the form ‘Ev’ followed by the page number.

List of written evidence

Local Government Association and Association of Directors of Social Services (CC 30) Ev 1 Age Concern (CC 29) Ev 17 Alzheimer’s Society (CC 26) Ev 28 Citizens Advice (CC 15) Ev 36 Royal College of Nursing (CC 21) Ev 47 English Community Care Association (CC 4) Ev 52 British Geriatrics Society (CC 19) Ev 53 Office of Parliamentary and Health Service Ombudsman (CC 23, 23A, 23B, 23C) Ev 64, 94, 96, 98 Department of Health (CC 9, 9A) Ev 76, 92 Paul Overton (CC 1) Ev 99 Southampton City Council Ev 99 Progressive Supranuclear Palsy [PSP-Europe] Association (CC 6) Ev 101 NHFA (CC 8) Ev 104 Enfield Disability Association (CC 10) Ev 105 Royal College of Physicians of Edinburgh (CC 11) Ev 106 Hampshire Social Services (CC 12) Ev 108 BUPA (CC 13) Ev 111 NHS Confederation (CC 14) Ev 113 Association for Children with Life-threatening or Terminal Conditions (CC 16) Ev 114 Solicitors for the Elderly (CC 17) Ev 116 Mr Andrew Shaw (CC 18) Ev 118 Continence Foundation (CC 20) Ev 119 Motor Neurone Disease Association (CC 22) Ev 119 Parkinson’s Disease Society (CC 24) Ev 121 Relatives and Residents Association (CC 25) Ev 123 Help the Aged (CC 28) Ev 124 Help the Hospices (CC 31) Ev 129 Mackintosh Duncan Solicitiors (CC 32) Ev 133 Continuing Care Conference (CC 33) Ev 136 The Law Society (CC 35) Ev 138 Ms Marion Shoard (CC 36) Ev 144 Royal College of Physicians (CC 37) Ev 147 Commission for Social Care Inspection (CC 38) Ev 147

List of unprinted written evidence

Additional papers have been received from the following and have been reported to the House but to save printing costs they have not been printed and copies have been placed in the House of Commons library where they may be inspected by members. Other copies are in the Record Office, House of Lords and are available to the public for inspection. Requests for inspection should be addressed to the Record Office, House of Lords, London SW1. (Tel 020 7219 3074) hours of inspection are from 9:30am to 5:00pm on Mondays to Fridays.

Elizabeth Balsom (CC 2) Gay Lee (CC 5) Jane Williams (CC 7) Pamela Coughlan (CC 27) London Borough of Richmond Upon Thames (CC 34) Ruth Hudsom (CC 39) Fiona Burt (CC 40)

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Health Committee: Evidence Ev 1 Oral evidence

Taken before the Health Committee

on Thursday 10 March 2005

Members present:

Mr David HinchliVe, in the Chair

Mr David Amess Jim Dowd John Austin Dr Doug Naysmith Mr Keith Bradley Dr Richard Taylor Mr Simon Burns

Memorandum submitted by The Local Government Association (LGA) and the Association of Directors of Social Services (ADSS) (CC 30) The Local Government Association (LGA) represents over 400 local authorities in England and Wales and exists to promote better local government, enabling local people to shape a distinctive and better future for their communities. It aims to put local councils at the heart of the drive for better public services, working with the Government to secure that objective. The Association of Directors of Social Services (ADSS) represents the 187 Directors of Social Services in England, Wales and Northern Ireland. Directors of Social Services are responsible through the activities of their departments for the well-being, protection and care of vulnerable people including older people, people with disabilities, people with mental health problems and children in need and their families. The purpose in collaborating to make this submission is to set out key issues for the local government community in the development of a national framework for NHS continuing care which resolves previous and current diYculties.

Introduction and Local Government/Social Care Perspective The LGA and ADSS welcome the intention to establish a national and consistent approach to fully funded NHS continuing care. The absence of clear guidance; diVerential approaches over time and in diVerent health organisations and health/social care communities is and has been problematic to health and social care organisations (including the independent sector), their workforce and, most significantly to communities and individuals needing and relying upon NHS services critical to their health and wellbeing. We are concerned to ensure however that the move to national criteria should not deliver a more restricted entitlement to continuing NHS care overall, and that it should draw upon those existing arrangements in SHA’s around the country that best address the issues we outline below. Our submission sets out what we believe to be continuing diYculties caused by lack of clear guidance; issues that we believe need to be addressed in establishing a national and consistent approach and a number of specific examples of continuing diYculty. We would be pleased to explore these issues further in oral evidence to the committee. 1. It is evident that lack of clear guidance has resulted in diVerential criteria and a range of interpretations that have resulted in lack of transparency and a lack of fairness. The findings of the ombudsman set out concerns that: — Central guidance and support had not provided a secure foundation to enable a fair and transparent system of eligibility for funding for long-term care. — What guidance has been available has been misinterpreted and misapplied by some health authorities when developing and reviewing their own criteria. — There have been further diYculties in the application of local criteria to individuals. —TheeVect of this has been to cause injustice and hardship to some people, both in relation to the nature of the services they receive and in terms of what they pay for them. — Where the person was to be supported even partly by the Local Authority (LA), the LA will have suVered financially, with an associated impact on ability to meet others’ needs. — The experience of local authorities in many areas underwrites these concerns. Additionally we would add to issues that need to be addressed in a new and consistent approach: 3038591001 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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— Much of the guidance that has been issued since the early 1990’s has been directed at the NHS, albeit with requirements that local authorities are engaged and “Sign up” to criteria within the area. The experience of local authorities in a number of places indicates that this had not happened. This will have caused or compounded diYculties in some areas. — Narrow interpretations of eligibility for continuing NHS care have resulted in injustice and hardship for individuals, but have also resulted in shifts in responsibility—both in the provision of care and its funding—from the NHS to LA funded social care in a number of places. Not only has an individual’s entitlement to “Free” NHS care been compromised by local processes, local resources intended for social care services will have been used to subsidise health care services. — Narrow interpretations have tended to centre on definitions of what care is “complex or intensive”, rather than consideration of the overall health and wellbeing of the individual and his/her circumstances. This is inappropriate and can lead to individual decisions that are diYcult to understand. — Considerable resource has also been tied up in arguments both about organisational responsibilities and individual entitlements. This is not a good or eVective use of local resources or of taxpayer’s money. — Organisational diYculties have meant that processes have too often been about safeguarding against legal action; despite this it is not clear that the position is suYciently resolved not to have to revisit the issues further at some point in the future. — Criteria that have been established on the basis of financial risk to NHS organisations have meant that determining continuing care has become an issue of resource management rather than individual status or entitlement. This is inappropriate, unfair to individuals but has also impacted upon providers of service—in particular where health care needs have not been adequately funded or otherwise resourced. — Additionally, there is evidence that funding diYculties in SHA’s across many parts of the country have determined interpretations of NHS Continuing Care eligibility. Restrictive approaches to eligibility by the NHS have created instances where Council’s are, in strict legal interpretation, probably exceeding their powers by funding individual’s who ought to be entitled to NHS Continuing Care. As noted above, a consequence of LA funding is that the individual is subject to means testing and possible payment, so there is a likelihood of injustice. — Although much progress has been made in the development of integrated health and social care services—both in respect of pooled budget arrangements and use of other Health Act flexibilities—uncertainties about the “boundary” between health and social care have, we believe, inhibited the development of community based, “joined up” and personalised services. — The focus that has inappropriately been given to “bed based” continuing care services— sometimes also time limited services (as in the case of palliative care)—has had the eVect of skewing the development of local markets. 2. In summary, the lack of clear guidance has given rise to inconsistent and misapplied criteria, has been unfair to individuals; unfair to local communities and taxpayers; unfair to organisations and their workforces—local authority and NHS—and unfair to local providers of care.

Principles to a New Approach 3. Key to the establishment of a new national approach that is well understood and which delivers consistency, equity and fairness will be to ensure that all stakeholders are involved in its development. Although the minister indicates that the Department will work with the SHA’s to build upon the work done to date, it is clear that to meet the requirements of modernised health priorities it is essential that all of the health and social care community is engaged. 4. A new framework does not just need to be easier to understand. It needs to be transparent and demonstrably fair to all those involved: — To individuals receiving timely, appropriate and personalised services. — To organisations with clear responsibilities and accountability to local communities with a workforce clear about expectations upon them. — To local communities confident that value for money is achieved through good, responsive eVective and eYcient services. — For local providers delivering services to clear commissioning intentions and funding arrangements. 3038591001 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

Health Committee: Evidence Ev 3

5. The priorities for the NHS and social care as set out in the NHS Plan, National Priorities Guidance and their respective updates indicate a determination to achieve high quality personalised care, an emphasis on support to people with long term conditions achieving healthy lives and a healthier, fitter population. The vision as expressed in the NHS Improvement Plan, Putting People at the Heart of Public Services is: “One where the founding principles underlying the NHS are given modern meaning and relevance in the context of people’s increasing ambitions and expectations of their public services. An NHS which is fair to all of us and personal to each of us by oVering everyone the same access to, and the power to choose from, a wide range of services of high quality, based on clinical need, not ability to pay”. 6. We are pleased to endorse this vision. In order to ensure that it is secured there needs to be: — Transparency about what services are required and how the necessary service shifts will be resourced and funded. — Clarity about what care will be free at point of delivery; what care will attract a charge or contribution from users; what “self funders” might expect by way of support from the NHS in whatever setting they may find themselves. 7. The context for a national approach to continuing care, therefore, will need to take account of a developing and modernised service and be forward rather than backward looking. 8. In particular it will need to take account of increasingly integrated health and social care services, and of services provided at home rather than in a hospital or long term care bed. 9. Key principles will therefore include: — Good and publicly available NHS information to patients/users and their carers about: — entitlement to Continuing Care; — the decision making process, and ability to contest decisions; and — information on choice, including options to receive Continuing Care at home. — Entitlement to NHS Continuing Care should be based on an individual’s overall condition/set of needs rather than in relation to the skill set required of the care provider’s staV. In other words eligibility decisions should be based on the situation of the individual in need irrespective of whether all of the care will be subsequently delivered by a “skilled” medical practitioner or not. — A person’s needs ought not to be divided into personal and nursing needs, and only the nursing ones counted, not only because there is no such distinction in statute but also because the law laid down in Coughlan and the Ombudsman’s approach has been that personal care needs derived from an illness or injury are properly the concern of the NHS if the level of the overall need is such as to trigger entitlement. That is to say, the question whether the service counts as a nursing service in the opinion of professionals, or as something that needs to be done by a professionally qualified nurse, as RNCC under section 49 Health and Social Care Act, should not be determinative of a person’s funding status. — A person’s overall needs at the particular moment in time being the deciding factor, entitlement cannot be based on time-limiting approaches such as how long care will need to be provided, eg how long a person is expected to live. — Access to fully funded NHS Continuing Care must better incorporate the care needs of individuals in the later stages of long-term neurological and other progressive conditions and must be equitable between all those with similar needs irrespective of the nature of their diagnosed condition. — If an individual is judged as entitled to fully funded NHS Continuing Care this should be provided in its totality by the NHS in a community setting, if it would otherwise have been provided in its totality in an NHS funded care home or hospital setting. — “Challenging behaviour”, whether in relation to mental ill-health, dementia, cognitive impairment, learning disability etc must be included as a key factor in the criteria for entitlement to continuing care and applied consistently irrespective the particular “user group” to whom it relates. 10. The ability to receive care for complex and long-term health and social care needs is as important as receiving good hospital care when it is needed. The availability of good community services is not just about developing alternatives to hospital, it is about enabling independence, choice and control over life and lifestyle and is about helping people to care for themselves wherever possible. In order to assist this it is essential that front-line workers are clear about their roles and responsibilities, about the pattern of service that might be available and/or how this might assist people to take more active part in their own care. It is also essential to ensure that the funding arrangements for modernised health and social care services— including care that is self managed—are transparent. 11. The importance of developing rehabilitation and recovery services is a crucial priority in order to promote independence, enable choice and control and to ensure that people can receive services in their own homes wherever possible. If, with the assistance of rehabilitation, respite care and other community services 3038591001 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

Ev 4 Health Committee: Evidence

a person can be supported to live in the community with a lessened need for inpatient care, then resources should be devoted to that end. Clarity about available resource is essential to commissioning an appropriate range of services and for potential providers to plan realistically for delivery. 12. A new approach, therefore, needs to take account of innovative and person centred means of delivering services. The development of Direct Payments in the delivery of social care service and support needs to extend to the delivery of NHS services. If assessment of need determines eligibility to continuing care, how services are delivered or who delivers them should be determined jointly between the patient/user and their professional/clinical advisors. 13. Similarly, the availability of community services which can provide extensive care at home are critical to ensure that people do not stay longer than necessary in hospital or similar long term care setting. It is equally essential to ensure that people recovering from acute episodes of in patient care are discharged from hospital appropriately in order to reach all potential for recovery and/or to regain confidence. Premature discharge from hospital without good community based services will lead to poorer experiences for patients, increased levels of readmission and potentially greater costs to the public purse.

Long Term Conditions

14. The vision set out in the NHS Plan and priorities guidance indicates a provision of health care services that is not simply about (as has been the case) a focus on acute and emergency need, but rather also includes long term conditions and appropriate care and support. 15. The NHS has (unfortunately) increasingly moved towards a greater focus on interventionist episodic treatment and rehabilitation, and consequently away from the provision of ongoing long term care. Therefore people with long term and progressive conditions have not been viewed as the responsibility of the NHS, even when their condition has deteriorated very significantly. This has been compounded by wide variation in the application of criteria for fully-funded NHS Continuing Care which means that many families struggle to support individuals in the end stages of long term progressive illness with help only from means tested or self-funded social care. 16. Such diVerential approaches to various health conditions have been apparent, seemingly related to how far the NHS has seen itself as suited to “intervene” regarding treatment or rehabilitation over time. So for example with cancer, during later stages of illness, an individual may, albeit over a short period of time, receive free NHS funded care that meets all or most of their requirements for care and support. The care needs of an individual during the later stages of long-term neurological conditions will often be similar or greater than those of cancer suVerer nearing death, but are often not viewed as entitled to the same totality of NHS funded support; this is not least because they may need such care over much longer periods of time, and may not have recently been actively receiving treatment or rehabilitative input. 17. Local “NHS Continuing Care” assessment must take account of the particular needs of people with long term conditions (eg including physical impairment, communication, cognitive and behavioural problems). Health service providers will need to ensure that access to fully funded NHS Continuing Care is equitable, for example, between all those with long term and progressive conditions and that a person’s overall needs are the deciding factor. 18. This shift of emphasis will also require a shift in understanding of the respective roles, responsibilities and accountabilities of people providing health and social care support and the skill base of the workforce. 19. The long term nature of many neurological conditions means that people often require a much wider range of support, including all aspects of continuing care (physical, mental, social, spiritual), residential, respite and terminal care at appropriate times over a much longer time period than provided by traditional palliative care teams. There are only a small number of services oVering comprehensive, advanced end-of- life care for people with long term neurological conditions (although this is often considered to be outside NHS Continuing Care and is therefore chargeable). Additionally, services to support people within their own home or locality are significantly lacking, despite the fact that most people would prefer to die at home.

Other areas

20. It is clear that funding for state supported nursing care in nursing homes transferred from Local Authorities to the NHS on introduction of the “Free nursing” arrangements in April 2003 (See PSS Funding Letter LASSL(2002)11)). A similar principle should apply where responsibilities for services move from the NHS to social care systems both to enable best deployment of the available resource, but also to ensure that what is provided free and what is charged for are clear to people using and relying upon services. It is not satisfactory for this to be determined on the basis of who delivers care rather than what care is being delivered and to meet what needs. 3038591001 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

Health Committee: Evidence Ev 5

Examples of specific diYculties

21. Confusion about eligibility for continuing care and the “Free nursing” assessment. — There is confusion over levels of need as the RNCC tool gives examples of need which are far higher levels of need than Pamela Coughlan and her fellow residents (described by Court of Appeal as well over the boundary into at least some NHS responsibility) and yet, by definition, the RNCC Tool and High Band Nursing care is only relevant as a level of need below fully funded NHS continuing care. — A clear distinction must be made between top band RNCC and entitlement to NHS Continuing Care—the tendency identified by the Ombudsman for NHS staV to not properly consider an individual’s entitlement to continuing care, before deciding on their RNCC banding means that they will not be properly assessing the totality of the individual’s care needs. This is of continuing concern. There is also a need for ongoing review of patients in nursing homes with regard to their entitlement to continuing care, particularly once they are on the top band of RNCC. — There are real concerns in some places about the quality of nursing assessment that contributes to the multi-disciplinary assessment. This is critical as it can aVect whether someone receives continuing care or whether they are placed in residential or nursing care. Although it is predominantly a training and application issue the vagueness of the eligibility criteria is fundamental to how professionals view, interpret and implement the policy. — The most telling area for misapplication of the criteria is the “EMI” group. Many service users and their carers are confused when reassessments move them oV continuing care and into Social Services responsibility even though there appears to be little change in the circumstances of the person assessed—loved ones still see them as confused and dependent missing the subtlety of a change in nursing input. 22. Direct Payments—for someone in receipt of Direct Payments a change of needs which makes them eligible for fully funded NHS continuing care means they are no longer entitled to Direct Payments. As the Law stands the NHS could have responsibility to meet the needs of that individual but the NHS cannot do so via Direct Payments The NHS should be in a position to provide NHS Direct Payments as part of their choice agenda. 23. Equipment—There is lack of clarity as to the provision of equipment for NHS continuing Care patients. There should be more clarity as to what can/should be provided within any national guidance/ eligibility. 24. Appeals Process—The Appeals process is not suYciently transparent for users and carers. Users can only challenge decisions regarding the process or application of continuing care eligibility rather than the decision itself. 25. Relevance to section 117 clients receiving aftercare under the Mental Health Act: currently section 117 aftercare is a joint duty and the courts have suggested that this implicitly authorises cross funding, which can only mean health and social care jointly purchasing whatever is seen to be necessary as aftercare. No- one knows whether this approach means that s117 status for released ex detained patients “ousts” the right of a client to full 100% NHS continuing care status, or whether that status eVectively means that the very most needy patients leaving hospital from under section won’t in fact need any s117 aftercare, it being funded by NHS continuing care . . . Some SHAs treat section 117 patients as entitled, and others do not. 26. The law on which PCT is the responsible commissioner was supposedly going to be changed to enable the originating PCT to continue to fund truly shared care or specialist packages for clients who need to move from one area to another. Until this is done, no LA is able to make plans for people needing to move out of area, because no LA can expect to know every single other PCT’s continuing care criteria or arrangements for shared care. 27. Children with very extensive health related needs—the issues are as follows: — do special education duties under the Education Acts and the social services functions under the Children Act, towards children in need, children accommodated and children in care in either children’s homes or foster placements, operate to relieve the NHS of its normal obligations of continuing health care to the most needy? Or do NHS functions oust the obligations under those Acts where the child in question has health care issues which must logically take precedence over their educational and daily welfare diYculties? — The National Assistance Act makes it clear for adults that the NHS legislation and policy guidance as to what should be provided under the NHS, ousts any power for Local Authorities to provide an equivalent to those services instead. There is no similar exclusion in the Education or children’s legislation, in relation to the interface with the health legislation. Some SHAs regard a looked after child as one whose accommodation and personal care needs in a specialist setting should fall to the relevant LA, rather than being an incident of providing free NHS care to the child. 3038591001 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

Ev 6 Health Committee: Evidence

— Children’s home proprietors, foster and respite carers cannot reasonably be expected to undertake the same levels of “nursing type” input in relation to sick children as a natural parent might be prepared to put in—for reasons of liability if nothing else. Yet many SHA/PCTs take the view that if a parent has been doing intimate care and then cannot for some reason, it should be a LA responsibility to pick up that care. Our position is that if the task had to be trained by the district nurse, it must inevitably be seen as an NHS function.

Witnesses: Ms Elaine McHale, Director, Social Services and Health, Wakefield Metropolitan District Council, Ms Cath Attlee, Director, Commissioning and Modernisation, Hounslow PCT, Ms Yvonne Cox, Chief Executive, Oxfordshire Learning Disabiliy NHS Trust, Mr Michael Young, Developing Manager, North West London Strategic Health Authority and Ms Denise Gilley, Policy Leader for older people, County Durham and Tees Valley Health Authority, were examined.

Q1 Chairman: May I welcome you to this session of skills and mixing those. It is not helpful to define the committee at the start of a short inquiry into things specifically as a health input or a social care continuing care. We have three separate short input. We are looking more and more at being able sessions this morning. As we are trying to get to provide complex packages of care by a range of through so many witnesses and questions, may I ask professionals. In some ways, the policy here is a little colleagues to be brief and witnesses be reasonably behind the practice around that developing role. concise. May I thank you for your written evidence. Ms McHale: I would like to echo what my Would you briefly introduce yourselves to the colleagues have commented on there and the fact committee. that we do have to modernise this criteria and Ms Gilley: I am Denise Gilley, Policy Leader for guidance to reflect the aspirations of policy between Older People at County Durham and Tees Valley both health and social services. That is potentially Strategic Health Authority. slightly easier to define but potentially restricts what Ms Cox: I am Yvonne Cox, Chief Executive from social services do because of the diVerent statutes the Oxfordshire Learning Disability Trust. available. Ms Attlee: I am Cath Attlee, Director of Commissioning & Modernisation at Hounslow Q3 Chairman: One of the issues we have talked Primary Care Trust and Chair of the North West about on many occasions is removing completely the London Continuing Care Review Group. definition of a boundary. If that were to happen, Mr Young: I am Michael Young, a development would it not make your work a good deal easier? I manager for partnerships at North West London am struck that when we are told to remove that Strategic Health Authority. boundary, inevitably Treasury have to move one Ms McHale: I am Elaine McHale, Director of Social way or another, either to introduce charges to the Services for Wakefield, but representing the ADSS NHS for what is currently free care, or to remove and LGA. means-tested social care charges, which would be tough for any government to do. If one looks at the Q2 Chairman: May I begin by just exploring the cost of what I regard as an industry around the issue that we, the committee, come back to in almost division between the health and social care of people every inquiry that we do that relates to social services on both sides of the fence attempting to make sense and health, and that is boundaries. Obviously the of something that, frankly, is not sensible, would we boundary is at the heart of much of what we are not save a substantial amount of money? Has the going to be talking about this morning. I have a clear amount of money that would be saved around the recollection of Frank Dobson in front of the margins by abolishing this division ever been Committee when we were having an inquiry into the calculated? relationship between health and social care and the Ms McHale: There is an element of truth in that. division between the two. I asked him if he could give There is lot of public funding being spent on legal us a definition of the division between health and definitions, particularly around this policy guidance, social care. He said that he honestly could not. That and much wasted time and energy in trying to V was probably five or six years ago. Are we any nearer achieve an outcome for individuals in di erent local establishing a division? Can anybody give me a authorities. Fundamentally, there is a lot of unmet categorical division between the two areas? need here as well in terms of the application of continuing care. I do not think this is properly Ms Gilley: I think we are nearer but I do not think, Y unfortunately, unless one of my colleagues is about resourced. Whether there is su cient to be able to get it out of what is going into the legal challenges or to volunteer, any of us could give you a categoric V definition. Much of that is based on the needs of the di erences of opinion is potentially a bit individuals, which will diVer. If you are going to take underestimated. account of those on the one side, which is what we are trying to do currently, and you have a very tight Q4 Chairman: Has anybody in an organisation like definition, that will exclude some people who yours that has obviously been involved in this issue otherwise should be funded by the NHS. for a long time, the ADSS, along with, say, the NHS Ms Attlee: As policy and practice change, the Confederation or somebody who has a role in health boundaries are shifted, so we are looking more and actually looked at an estimate of the costs of more at diVerent professionals taking on diVerent abolishing the charges on the social care side and 3038591002 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

Health Committee: Evidence Ev 7

10 March 2005 Ms Elaine McHale, Ms Cath Attlee, Ms Yvonne Cox, Mr Michael Young and Ms Denise Gilley balancing that against the current costs of policing its application, even though the eligibility is the this division about which none of us feel able to same. We have pulled a group of representatives come up with a definition? Ms Gilley says we are from both health and social services together to look getting near it. I can recall getting near it 25 years at cases every now and again to see why in Bradford ago but we are still not there. Has the ADSS made you might get continuing care with this case but, if an estimate or a guesstimate of this? you applied for it in Wakefield, you would not. Ms McHale: I cannot honestly say that anyone has There are still diYculties with the same eligibility attempted to guesstimate. I would like to add that as criteria and the same enthusiasm to implement that; there is closer movement towards what health and there are diVerences of outcome. social services do, that means some things have been lost in what social services have done previously. Q7 Chairman: Be careful how you answer this next That is potentially around the prevention agenda question because it might land on your desk. I can and the domestic/domiciliary aspects of enabling think of a particular case I am dealing with where a people to live independently. These things are not Wakefield resident has gone to Barnsley, which is in calculated. adiVerent SHA where presumably the organisation Ms Gilley: The nearest you would be able to come to is somewhat diVerent? it, and it was some considerable time ago (not quite Ms McHale: That is interesting because payment by as long ago as 25 years, you will be pleased to hear) results is going to make this even more diYcult. is the Royal Commission into Long Term Care, which did quite a lot of work in calculating various Q8 Chairman: Can you say a bit more about that? scenarios. It would be possible to extrapolate some Ms McHale: Yes. Payment by results is going to of the information from that. The amounts were mean a transfer of cases across a wider range of hugely significant to the Treasury. providers. You can get the first assessment of continuing care in an acute hospital. You will be Q5 Chairman: It is fair to say that the cost of policing asking staV potentially to work against diVerent this divide is a very sizeable amount of money, is it interpretations of continuing care criteria for any not? amount of patients coming in from diVerent Ms Gilley: Yes, but you would have to extrapolate locations. Potentially, it will become even more the figures from the Royal Commission and then diYcult for people to accept continuing care by that perhaps look at one local area and extrapolate from change in policy alone. that. If you multiply by 28, for instance, that would give some order of magnitude of one to the other. Q9 Chairman: The choice agenda has a huge bearing Ms Attlee: This is an important calculation that Y on this? needs to be done. It would be increasingly di cult to Ms McHale: It does, and the modernisation of this do. Certainly, in the way in which we have assessed policy has to take account of these new policies that and gone through the process of assessing people’s are coming in, too. The same would apply to the needs for continuing care, we have tried not simply impact on direct payments under Section 117. to focus on what is the financial responsibility but to Ms Attlee: It is worth pointing out that however look at how we use this process to ensure that care clear the national framework was or a local needs are appropriately met. We are disentangling framework is, there will always be an element of the policing and financing issue from doing a proper professional judgment. We have discovered, in terms assessment. Finding the appropriate care package Y of trying to eliminate the inequitable impact, that it would be quite di cult on the costing elements. That is about putting in a system with the checks and bit around doing a multidisciplinary assessment, balances. You have a multidisciplinary team doing recognising the appropriate needs and how we meet the assessment; another multidisciplinary panel those in a care package would still need to be done, validating that assessment locally; and then a whether or not it was met through fully-funded NHS strategic health authority-wide or higher level care or through a local authority funded package. authority validating across the board, so that you are constantly doing that cross-checking. You are Q6 Chairman: One of the issues we have picked up in not going to eliminate the element of professional evidence we have received is the impact of diVerent judgment, even if you have standard criteria across eligibility criteria. Ms Gilley suggested that in the country. Every clinician will interpret slightly looking at costings, you could look at one area and diVerently, and practice is changing all the time. You extrapolate from what is happening in one area what need constantly to be validating against that new a national cost might be. One problem with that is practice. It is important that in any system we that we hear the situation is diVerent from area to implement you build those checks and balances in. area. Can you give us examples of some of the One of the advantages of the latest criteria on diYculties that perhaps you pick up with diVerent implementation has been in allowing us to recognise eligibility criteria when you work physically across that and to establish those mechanisms jointly with boundaries? local authorities, so that we are together validating Ms McHale: I have led a group of West Yorkshire on a regular basis. That needs to be built into the local authorities and we have agreed the eligibility system throughout, preferably involving users in the criteria with the strategic health authority. We voluntary sector, so that we are getting that believe we have a good partnership approach to its validation throughout the system, not simply implementation. However, there are diVerences in through the statutory bodies. 3038591002 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

Ev 8 Health Committee: Evidence

10 March 2005 Ms Elaine McHale, Ms Cath Attlee, Ms Yvonne Cox, Mr Michael Young and Ms Denise Gilley

Q10 Chairman: Do you think that with the Ms Cox: Personally, I think that the criteria, development of common single assessment particularly for adults, does need to be diVerent. We processes there is now much greater understanding piloted a modified system from Thames Valley between professionals as to what the criteria are? recently. I am struck by the emphasis on what people Where criteria are established, is there a greater cannot do. The whole issue around learning ability to get to an agreement on the criteria or disabilities, certainly in Valuing People (DH March whether someone satisfies the criteria? Has that 2001) and Improving Life Chances For Disabled improved? People, is about valuing what they can do and what Ms Attlee: Yes. their contribution can be. I think we need something Ms Cox: I was reflecting on some of your earlier that matches those two together. I do not think that questions and answers. In looking at learning is either diYcult or impossible but you have to know disability services, which in many respects have been that a 25-year old going through this process will at the forefront of much of this work, 10 or 15 years have very diVerent expectations for the rest of his life ago we were used to having the money put together. than an older person would have and the processes There has been general acceptance of a they go through. This is something that ought to be multidisciplinary/multi-agency approach in terms of reflected. This is about that modernisation. the assessment of people’s needs and how those needs on an individual basis can be met. It is Q13 Dr Naysmith: What stops that happening important that as we develop new guidance that is everywhere? You say you have a pilot scheme. picked up. It is not just about continuing care for Ms Cox: Around parts of the country they have older people but for all of the population. There are begun to do that. I know that certainly in north probably some models around in groups of people London they have used it both for people with a that may be smaller per head of population but are learning disability and people with mental health equally important. I think the single assessment problems. There is nothing very specific in the process, which we are now seeing in children’s guidance. The guidance is predominantly around services and for learning disability and so on, begins older people, delayed transfers and so on, and the to iron out some of these things. That would issues those raise. It would be helpful if the guidance undoubtedly give a better consistency and level of built on that and picked up where services are and understanding by everybody. the direction in which they are going for those individuals and recognise that the NHS will not be Q11 Chairman: I was struck by a comment that the total provider for somebody in that age range. Anne Abrahams, the Health Services Ombudsman, They will want a broad spectrum of services, of which the NHS may be a very important part, but made to one or two of us who met her recently. She there will be other elements that will be equally said that the professional joint working, currently important. common practice in most areas, left departmental Ms Attlee: I might venture to disagree. Most of that demarcation lines behind it many moons ago. Is this is absolutely right but we should be making sure that not an area where the demarcation lines are grossly for older people those principles of promoting outdated and it would help you people if those independence and enabling are applied to them, demarcation lines—and I can be repetitive and rather than taking a diVerent approach from that for boring on this subject, as I have been for nearly eight younger adults. Certainly the evidence from Age years on this committee—were abolished and we Concern and everyone else is that older people are moved forward without that problem? Would that not a distinct set of people who suddenly lose all not be extremely helpful in moving forward in the their aspirations. These are people with a similar future? range of disabilities, abilities and aspirations and we Ms Cox: I think it would be helpful if you look at the Y should be ensuring that promoting and enabling Cabinet O ce document January 2005, Improving approach is across all adults, however old they may The Life Chances For Disabled People and the view be, rather than taking separate approaches. for provision for that over the next 25 years. That is Certainly in north west London we have criteria that broader than simply health and social care. That apply across the board and recognise a huge amount would embrace education, the benefits agency and of dual diagnosis and multi needs that you cannot so on. The vision behind that around individualised simply define as a learning disability or applied to funding, using direct payments and a variety of other older people or whatever. We try to encompass all of V methods would seem to indicate a very di erent and those across the board. better way forward, leading on from the issues of choice and all the things that the NHS has done, but linking into other mainstream policies around social Q14 Dr Naysmith: What do you think of that, Ms care—housing and so on. Cox? That is quite the opposite of what you were arguing. Ms Cox: It reflects what I said earlier about learning Q12 Dr Naysmith: On this subject, it might be useful from other areas. I am hearing that in north London to ask Ms Cox at this stage: do you think we should they have done that to promote independence, have separate criteria for diVerent client groups? I choice and control in terms of valuing people. In know you said that the older ones are much larger in learning disability terms, that is something we have numbers than some of the others. Do you think that been striving towards for a very long time. My would be the right thing to do? concern is that we do not go backwards. If what we 3038591002 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

Health Committee: Evidence Ev 9

10 March 2005 Ms Elaine McHale, Ms Cath Attlee, Ms Yvonne Cox, Mr Michael Young and Ms Denise Gilley are saying is that we want to move forward in the Q16 John Austin: If we go back to the Ombudsman’s same direction for all groups, that is a fantastic recommendations and the review, there has been aspiration to have. some criticism that the Government’s action fell Ms McHale: I would add a little bit to this part of the short of the Ombudsman’s recommendations. I debate in that you do not need to go down separate know my colleague, Dr Naysmith, wants to pursue criteria guidance if you focus on the needs of the this with the next set of witnesses. We have heard a individual. Need should determine the outcome lot about the postcode lottery and has the review rather than the potential professional input that is merely reduced the number of postcodes from 95 required if there are diVerent service user groups. to 28? You should consider the impact that continuing care Ms Gilley: I should not really be saying this. I do could and should have on children. I firmly believe think that over-simplifies things because it is to do that if children were accommodated within the with the assessment process. It is not to do with 28 continuing care policy, then you would see a strategic health authorities, with all due respect, but diVerent long-term commissioning arrangement of the number of primary care trusts and their partners, service provision, which would build for the future the social services departments. In terms of the and contribute to the aspirations we have around decision-making process, that is generally the first government policy. and very key stage of that process. It is about monitoring them and their consistency of decision- making and making sure that people who are Q15 John Austin: For clarification, may I add to an assessing and people who are deciding are doing that earlier question from the Chairman that the in a consistent and transparent way. Chairman finds it incomprehensible why anybody would move from Wakefield to Barnsley! I want to come on to the independent review the department Q17 John Austin: Mr Young has mentioned the published and the reported response from SHA staV question of the National Framework. Perhaps I which described a staggering lack of central could put it to all of you and ask what that guidance. The Ombudsman, in her report, has said framework should include. Should it include a of the guidance that there was a question of complete revision of the eligibility criteria and misinterpretation and misapplication. Is it a lack of should it address both health and personal care guidance or is it a lack of consistency about applying issues? guidance, and could the Department have done Ms Attlee: It should not be a complete revision in the more to ensure a consistency of approach? sense of starting again. There has been a huge Ms McHale: Personally, I think there have been amount of progress in the criteria that we now work several attempts at issuing guidance, which have to. As you say, the 28 health authorities are much facilitated the inconsistency in application. One closer in their approach and delivery than the person’s interpretation of complexity or intensity is previous 96 were. The review group is in place and diVerent from someone else’s. I think more could doing that work; it is building on all that good have been done with regard to clarification and practice that has happened and the good policy that transparency about the definitions and the has been developed. It is not about a wholesale applications. review but about taking the best and confirming that Ms Gilley: One of the issues at the time, following as the national standard, which will be very the publication of Anne Abrahams’ first report on beneficial. We have certainly developed our policy in continuing care, was that the Department of Health conjunction with local authorities. It is absolutely was not quick enough. That was our issue in terms critical that it covers the whole spectrum; otherwise Y of the processes that we were putting in place in it really makes it very di cult to implement the rest order to try and deal with the numbers of people who of the policy around integrated services and were contacting us, et cetera. That is my comment. I integrated care packages for people. That is what we do not know if there was going to be much that the are all about delivering. department was in a position to do at that time that Ms McHale: In future, the policy should was going to be helpful on the criteria themselves. concentrate on being transparent, equitable and The issue was about helping strategic health acceptable. It certainly should look at how we do V authorities, our primary care trusts and social things di erently, building on good practice and services to deal with the numbers of people who were good examples. It has to be fit for purpose for the asking for their cases to be reviewed. changing services. It is not about just doing exactly Mr Young: I came new into this at the same time as what we have been doing and a bit more of it where the guidance was coming out. I think the guidance it is right. We have to change to develop the policy was useful and has improved the consistency. so that it reflects how we want things to work in the Certainly, having seen the work done by the future. That does mean encompassing issues around predecessor health authorities, the guidance has learning disabilities, direct payments, challenging already enabled us to improve the consistency of behaviours and everything else. application and the patient experience of being assessed. Working towards a national framework Q18 John Austin: And a consistency of approach on with further and more guidance will support this assessment procedures? even more, particularly around the guidance of Ms McHale: There should be a consistency of involving users and carers in the assessment process approach on assessment procedures and ownership and also in understanding the decisions. of continuing care. We talked about the 28 strategic 3038591002 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

Ev 10 Health Committee: Evidence

10 March 2005 Ms Elaine McHale, Ms Cath Attlee, Ms Yvonne Cox, Mr Michael Young and Ms Denise Gilley health authorities but the PCTs have to own this as continuing care banding has to be diVerentiated well. It should not be resource-driven. There is a from that. I would add that there is not a proper huge element of resource availability that relates to process for review. If you are in a nursing home and interpretation of eligibility. you are on the high banding of nursing free-funded care, then if you then deteriorate into continuing Q19 John Austin: I assume that organisations like care, potentially there is not the opportunity the ADSS are in continuing negotiation or automatically to have that resolved. There are issues consultation with the department over this? about that. Ms McHale: We have been invited to participate in the revision and we are very pleased about that. We Q25 Dr Naysmith: What would you say should be would like to be partners in it and not just required done about that? to sign up to agreements. Ms McHale: We have to eliminate the discrepancy around the examples in the guidance for the higher Q20 John Austin: You have no indication when they level of nursing funding and re-emphasise the are likely to be ready? You have no inside requirement for the continuing care assessments to information about that? be done, first and foremost. There has to be built in Ms McHale: No, I have not. the period of review and monitoring, the availability and accessibility for people to do that automatically. Q21 Dr Naysmith: We have had lots of submissions putting in evidence to the Committee saying that Q26 Dr Naysmith: Ms Attlee, you wanted to come in confusion exists widely between the National Health on the general broad thrust. Service continuing care system and the registered Ms Attlee: I am slightly surprised about that because nursing care contribution framework I see a few certainly there is a built-in expectation that a nursing people are nodding, so obviously that exists. Do you review would be undertaken every year and at any think it is a problem? Does everyone think it is a point, either the inmate or the nursing home can problem? Is that generally recognised? trigger a continuing care assessment. Again, it may Ms McHale: It is. be about practice not reflecting policy. The framework is such that this should be a regular Q22 Dr Naysmith: What do we do about it? review of nursing care application. Ms Gilley: It goes slightly wider than that. One thing we have found is that members of the public are very Q27 Dr Naysmith: This is the whole area that we are confused about some very fundamental things, the investigating: why in diVerent places do diVerent most fundamental being that NHS services are free things happen, even though the criteria are supposed and social care services are charged for, so I think to be laid down. Going on to what is probably a that is the first point. slightly more embarrassing question for all of you: does some of this have to do with the fact that Q23 Dr Naysmith: I was not thinking about the primary care trusts have fixed budgets and that one public but about the people who do the of them is more expensive than the other, so getting commissioning, but both will be true, I am sure. towards the end of the year—Some people are Ms Gilley: The other things flow from that. Another nodding and some shaking their heads and saying it issue is that diVerent sets of people on occasions is not true. have been looking at nursing care bandings from Ms McHale: There is a big element of diYculty those who have done continuing care. We have tired facing primary care trusts in balancing their budgets to bring that together so that, in terms of local and dealing with the demands that continuing care decision-making panels, they do both. They will first can make. We have done some surveys of local and foremost look to see whether an individual is authorities. We know there is at least one PCT which eligible for continuing health care and only if and has a cap on how much per person they will give when they have decided that that person is not, will towards care. they then look at banding, if they are in a nursing home. Q28 Dr Naysmith: Can you be explicit on that? Ms McHale: I cannot. I would have to supply that Q24 Dr Naysmith: That is the way the system is information to the select committee later. supposed to work. Why does it not work like that? Ms Gilley: The system in County Durham and Tees Q29 Dr Naysmith: It would be good if you could do Valley certainly does now work like that. I cannot that. Do you think it never happens, Ms Attlee? promise that it has always worked like that but that Ms Attlee: No, I am not saying it never happens. is the premise upon which we make our local Certainly PCTs have financial problems and that has decisions. a bearing eVectively on how things are implemented. Ms McHale: That is correct. It is supposed to work I do not feel in our area that is the reason why like that. The Delayed Discharges Act requires the diVerences occur. Certainly it puts a pressure on the continuing care assessment to be made first. If you whole issue, and all the more reason why it has to be look at the guidance for the RNCC, it gives done in a joint fashion. Certainly in our case most of definitions and examples of the highest banding our commissioners who are commissioning long- being below that of the Coughlan outcomes. There term care are jointly employed by health and social is a huge level of confusion about this. The care. The issues about whether it is our budget or 3038591002 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

Health Committee: Evidence Ev 11

10 March 2005 Ms Elaine McHale, Ms Cath Attlee, Ms Yvonne Cox, Mr Michael Young and Ms Denise Gilley your budget are not the key issues as to why have had a number of people who have ended up in diVerences occur. That may well be the case in other acute care in the north east and who have then parts of the country. I can only speak for north west wanted to move south to be nearer relatives, and London in this regard. We have tried to build into there has been a negotiation but we have reached the system that it is about the needs and the agreement. The person has not ended up remaining appropriate placement and appropriate funding in hospital or going somewhere else; they have gone source and then, yes, the budget pressures appear, where they wanted to go. but they appear as part of our overall position. You may be familiar with north west London’s financial Q35 Dr Taylor: Again, with the strategic health position perhaps as a result of that. authorities, turning to the interpretation of the criteria, how do you monitor PCTs on their Q30 Dr Naysmith: You may not realise but this performance? could well go out on the radio on Sunday night and Ms Gilley: This is the point I was trying to make people in Hounslow might well write in and say they earlier. This is going to be important nationally so do not recognise that system, but you are happy to that something happens on this. We do have a say that? software programme. I say that with my fingers Ms Attlee: I am at least confident in saying that if crossed. It does exist and it does work but it does not somebody has been denied NHS full funding in give us the level of data extraction that we would north west London it is not because we have not got like. It is the beginnings of something. To be the money; it is because they do not meet the criteria. truthful, I think that would be the only way in future Mr Young: I would support that for the Strategic that you would be able to do this in terms of looking Health Authority. at spend, numbers of joint packages, numbers of cases for people who have a learning disability and Q31 Dr Taylor: I live in an area where I am just on through a whole range of issues that you then would the edge of one strategic health authority abounding want to pick out and look at. Then, as you would do two other strategic health authorities. Like other with any other data, you can begin to examine the members, I do have problems about where the outliers. There might be good reason why you have criteria appear to diVer. I quite take the point that particular outliers, but at least it would give you the you have made that it is very often the interpretation prompts to do that. of the criteria rather than the criteria themselves, Mr Young: We are probably not quite at the stage of but did our two strategic health authority having the electronic data but we are looking at representatives take into account the neighbouring similar issues around placement and getting the strategic health authorities’ plans when they made financial information. There are diYculties about theirs? financial information in diVerent PCTs that may be Mr Young: The work in north west London had using some money from continuing care budgets and started very early, following the 2001 guidance. This some money from community nursing budgets. was before my time. Cath Attlee chaired a group on Therefore, it is about having an understanding both this. I think other health authorities around—and as as to how the budgets are put together and a London health authorities we meet with other health consistency of understanding of what should be authorities—had looked at our criteria and were included in financial measures. We also have the seeing what was good and what was relevant to SHA panel which sees cases. We have been using the them. There had been some work done on that. panel’s test for consistency of decision-making across primary care trusts. We are also looking, as Q32 Dr Taylor: There was a certain amount of part of the training for assessors, at possibly consistency between areas? assessing sample anonymised cases to check that the Mr Young: Yes. same results come out.

Q33 Dr Taylor: What about in the north? Q36 Chairman: Would it be fair to say, comparing Ms Gilley: I would say something similar in the sense your area to Ms Gilley’s area, that you would have that we certainly had more detailed discussions with more of what she terms outliers? My recollection is our more northerly SHA, which is Northumberland, that when the community care changes came in, in Tyne and Wear. We did also have some discussions looking at the London experience, people seemed to with people from Yorkshire and also from the north- move much further afield from London than west to try and find out what other people were perhaps they would have done in an area like doing, what their approaches were, how they were Durham. With your geographical area, are you going about trying to get consensus to steer the likely to have more people moving out of your area whole process. and therefore you need to deal more with other areas than perhaps Ms Gilley would in the north east? Q34 Dr Taylor: Do you come across problems with Mr Young: Yes, but if they moved out of our area, cross-boundary flows where somebody is assessed in they would be assessed under our criteria initially. one area and goes to a residential home in another This goes back to a previous question: one of the key area? problems is not necessarily the diVerence in criteria Ms Gilley: Yes. It would be foolish to say that there but the appearance of criteria, the way they look in are not those issues but there have not been any cases each strategic health authority. That means that if that we have felt have been hugely unresolved. We people move out of area, and particularly in terms of 3038591002 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

Ev 12 Health Committee: Evidence

10 March 2005 Ms Elaine McHale, Ms Cath Attlee, Ms Yvonne Cox, Mr Michael Young and Ms Denise Gilley wanting annual reviews (and it is very hard in Ms Attlee: You have to be constantly validating. It London to do the annual reviews as we do send a lot is not a fixed scientific process. There needs to be of people out of area) someone who understands our constant validation, in the same way as the issue criteria and our assessment tools would need to be around developing the single assessment process is able to assess them. not static; it will be constantly developing. Yes, I think one can do that validation process. Q37 Dr Taylor: On the same lines, please help me to understand this. The responsibility remains with the Q44 Dr Taylor: That is your aim? PCT but presumably it is usually hospital staV, trust Ms Attlee: Yes. staV, who do the assessment. Is that right? Ms Attlee: It is usually a multidisciplinary set of Q45 Dr Naysmith: We have just been talking about staV, so it may be a social worker and a hospital the confusion between the two things. A lot of nurse or therapist, or, if the person is in the people have said that the RNCC framework was community already, a community-based nurse. useful as a national model. Does that suggest that a similar approach would be useful for the continuing Q38 Dr Taylor: The team would include people from care on a national basis? In a way, it is similar to a the acute hospital trusts? toolkit but this would be a national thing. Ms Attlee: If the person was in hospital, yes. Ms Gilley: You still come back to the same thing, that you do need a national framework, be it for nursing bandings or continuing care or anything Q39 Dr Taylor: I hate the phrase “toolkit” but there else. However, this is about the application of that. are various toolkits for this sort of purpose. Do you What has never been done to my knowledge, and I take note of which they use? Do you try to get them may be wrong about this, a comparison of how to use a particular toolkit across the patch? people are banded to see whether somebody who is Ms Attlee: We have a standard health needs’ high banded in one of our nursing homes would have V assessment form which we ask all sta doing the similar needs to somebody who was high banded in health component of the needs’ assessment to use, or a nursing home in north west London. Yes, in they may use something very similar. Some of the essence, use it, but the same thing needs to happen hospitals in London have something very similar. As about nursing home bandings as does about long as it produces the same set of needs’ data, that continuing care, which is about monitoring how is fine. They need to be able to produce a needs’ they are put in place and implemented. assessment that is able to be summarised in the standard format that we use for the north west London criteria. Q46 Jim Dowd: Could I look at the area of the retrospective reviews and ask you all what you think the best mechanisms are for ensuring that the lessons Q40 Dr Taylor: Is that all a toolkit is, a needs’ that they reveal and the past failures that they assessment form? uncover is incorporated and informs the Ms Attlee: There is a health needs’ assessment and development of the national framework? then there are other components that would amount Mr Young: In north west London we have identified, to it, yes. through the retrospective reviews, problems in the past. The key improvement that has already been Q41 Dr Taylor: If we do move to a single set of incorporated is that by asking our primary care trust national criteria, which hopefully we will, would you assessors to go out and carry out these independent then support a single toolkit or a range of toolkits? reviews, under an agreement that we as the 16 local Ms Attlee: I think that would probably be a range authorities and PCTs together drew up, there is a simply in terms of professionals wanting to have consistency of approach, particularly about their own. involving the carer in that review. The information from the carer has been incredibly useful. Many V assessors have said to me afterwards that doing it Q42 Dr Taylor: That is a range for di erent client this way, which for some of them was new, has really groups or diVerent professionals within this? V improved the process. I know that some of the PCTs Ms Attlee: There will be di erent tools that will add are now sitting down with the carer and using the up to the whole needs’ assessment. The health needs’ assessment tool: the carer has the assessment tool; assessment will focus on particular nursing needs, the assessor has the assessment tool. They are doing medical needs, et cetera. You have therapeutic it together and that is producing a much happier needs, the psychological needs, et cetera. Normally individual at the end. The individual understands there will be a number of components that will add the decision much better if he or she is involved in the up to the full needs’ assessment. There will be V V assessment process. For north west London that has di erent tools being used by di erent professionals been far and away the most eVective outcome from as part of the multidisciplinary team to add up to the retrospective reviews. that. Ms Attlee: Some other practical things have come out. One is the poor practice in terms of information Q43 Dr Taylor: Even with the diVerent tools, you and record-keeping, as has already been addressed, think you will be able to monitor and make sure that and which in a sense is being addressed separately as everybody is being treated equally and fairly? well by things like the Freedom of Information Act 3038591002 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

Health Committee: Evidence Ev 13

10 March 2005 Ms Elaine McHale, Ms Cath Attlee, Ms Yvonne Cox, Mr Michael Young and Ms Denise Gilley and everything else. Some of the poor practice that Mr Young: Yes. was clearly in place from 1996 onwards is already being tackled through a number of things. That Q53 Mr Burns: Have you completed all the reviews needs to be very clearly built into the national up to complaints received by March 2004? framework: record keeping, assessment process, Mr Young: All the reviews have been completed in involving users and carers in the process, et cetera. I the first stage. In north west London we oVer people think those lessons are already being learnt. They a second opinion if they have been unhappy. All need to be stated within any national framework those second opinions have now been completed as for review. well.

Q47 Jim Dowd: When you say “poor record Q54 Mr Burns: Do you know, oV the top of your keeping”, do you mean the quality of what was in the head, how many cases you have found where there records or the absence of records? was a mistake made and so compensation has had to Ms Attlee: Both. be paid, either to the individual or to their family, as a result of that mistake? Q48 Chairman: Are we talking in particular about Mr Young: In north west London, and I do not have nursing homes here? the exact figure, it is just over 100. Ms Attlee: Not just nursing homes but everybody. Q55 Jim Dowd: Out of how many is that? Mr Young: Out of about 220–230. Q49 Chairman: That is right across the board? Ms Attlee: Yes, not everywhere but examples across Q56 Mr Burns: As a matter of interest, what the board. compensation have you paid? If an individual, at whatever time the wrong assessment was made, had Q50 Jim Dowd: Are there any examples of where it then to sell his or her home, they could well has actually led to changes in practice? financially have lost out considerably, depending on Ms Attlee: Certainly in information, record keeping the state of house prices at the time they sold and has led to improvements in practice across the now. Have you just paid the cost of the care or has board, and again that has been addressed by things there been an element of compensation to make up like the delayed discharges and the other initiatives for the knock-on eVects the wrong decision has had that are going on in terms of record keeping. Yes, I on an individual and their financial position? would say there has been a huge improvement. Mr Young: The formula we used is the cost of care Ms Gilley: In terms of accountability, people who plus the retail price index plus inflation. are making the decisions jointly across primary care and social care now feel that they are accountable to Q57 Mr Burns: In fact, no compensation has been the people about whom they are making the paid if people have financially lost out because they decisions. Being brutally honest, if you go back to have had to sell their house? 1996/97, that was not the case. That is why there may Ms Attlee: We use Department of Health guidance. be records of someone’s assessment but they tend to be very clinical about their disease process, et cetera, Q58 Mr Burns: Are you anticipating anyone who rather than actually their needs, and there is very might be in that position suing you? little, if anything at all, about why they were not Mr Young: We have not as yet heard from any of the eligible for NHS funding. people to whom we have oVered restitution that that is what they are looking for. I have to say that when Q51 Jim Dowd: Why do you think the timetable, the I gave you those figures of 100 plus that does not projections, for completing the reviews has slipped necessarily mean, because we have carried out these so badly? reviews in a very thorough manner, that the original Mr Young: Certainly, in north west London, we did decision was wrong. It could be at some point in not expect this issue of lack of records or the between. diYculty in accessing records. I think we assumed that we would be able to write oV for the records and Q59 Chairman: The circumstances may have get them within 28 days. Unfortunately, that has not changed. happened. Cath Attlee raised this issue previously. Mr Young: Yes, the circumstances may have That has been a great diYculty. Now everyone is changed at a later stage and we have identified that much more aware that there is this accountability in from that point. Normally what has happened is that the process and the stream going up through the these have been quite small amounts for the PCT and local authority multidisciplinary panel, individuals because it has happened at a later stage. then the SH panel, then the Ombudsman. People are There have been very few at five years or whatever. much more aware that they must keep records and It has normally happened for the last two or three that those records must clearly explain the decisions months of someone’s care. they have made. Q60 Mr Burns: Just one final point on this: when you Q52 Jim Dowd: It is not just a tardy approach to the make an oVer to someone because a mistake has reviews; it is really that the reviews have been far been identified, do you make the oVer as a final more complicated than was envisaged at the outset? settlement? 3038591002 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

Ev 14 Health Committee: Evidence

10 March 2005 Ms Elaine McHale, Ms Cath Attlee, Ms Yvonne Cox, Mr Michael Young and Ms Denise Gilley

Mr Young: We do, but we also give them the name pay out for the wrong decisions, presumably in the of the local Age Concern representative to talk to repayment of the costs of care and not about the issues as well. compensation.

Q61 Mr Burns: Is that before they accept? Q65 Jim Dowd: Has anybody identified any cases Mr Young: Yes. We say, “You may wish to discuss along the lines that Mr Burns has just mentioned? this with someone”. In the form it sets out that if Have you any experience that that has actually someone agrees, it is a final oVer. happened? Ms Gilley: For us it is not; we would just make the Ms Gilley: No. payment. We use the Department of Health Mr Burns: Ms Gilley has just said that she thought guidance and pay to people restitution rather than that some cases had been sent to the Ombudsman for compensation. a request. Jim Dowd: If you wanted to sue the health authority or the PCT you would just get on and do it. You Q62 Mr Burns: Can you explain what your would not need to ask the Ombudsman for that, definitions of those two words are? would you? Ms Gilley: We took legal advice about this as well, Mr Burns: No, but it would be cheaper to get the just to be clear. Restitution is to pay back the Ombudsman to do it. amounts of money that people had paid out, plus an amount of interest. We had also been using the retail price index. There are various diVerent mechanisms Q66 Jim Dowd: Not necessarily. The Ombudsman’s you can use. That was the one we chose. recommendations are not mandatory. Could I come Compensation would be as applied in the legal back to the numbers, Mr Young, for a moment? You process: you look at somebody’s loss and, depending said about 100 out of 220. How many more cases are on the circumstances, that could be way beyond the you expecting to look at? actual cost of the nursing home fees and it would Mr Young: The ones that have come since April, and then take into account house sale, et cetera. We did I think we are up to cases that have come in within the former rather than the latter. When our primary the last six months. I think we have about 10 to 15 care trusts do make a payment to somebody, they do of those. not do it as a final settlement. If a person still wishes to appeal, in terms of the local process they can, and Q67 Jim Dowd: We are looking at an overall figure obviously they are still free to go to the Ombudsman of round about 40% of the cases you look at result service. That would be the direction that we would in restitution? point them in, in addition to local advice centres. Mr Young: I think it was a bit more than that but, yes, of a certain amount, not necessarily the full amount. Q63 Mr Burns: What would happen if someone or a family turned round and said, “We are X thousand pounds out of pocket because we wrongly had to sell Q68 Jim Dowd: In the experience of the rest of you, the family home and we want compensation”? is that a uniform pattern across the country, with Would you consider that on its merits or would you variations? Is that generally the kind of level that is reject it out of hand? occurring across the country? Ms Gilley: We would have discussions with the family. We have met with a number of people who Ms Gilley: I would say that ours was probably lower have had particular issues. We would write to them than that, but you have to look at the history as well formally to say that we will make them the payment in terms of the criteria that were in place in earlier of what is restitution and that they can accept that years, and whether or not they were incredibly strict. but it is not a final settlement. If they still have issues If they were incredibly strict and restrictive at a about how the money settlement has been certain point, the likelihood is that for that period it calculated, then we would say that they should take would result in a significant number of people who those to the Ombudsman service. I understand that were wrongly denied. However, in areas where the Anne Abraham’s service has actually been asked to criteria had been more fair, in that the level for look at a number of cases similar to that. I do think continuing care was lower, then obviously you will that then that would be the right and proper place. find less cases. I am not sure it is possible to extrapolate them. Q64 Mr Burns: Potentially, the £180 million that the Mr Young: 70% of our cases agreed have come from Government has identified as the probable cost that one previous health authority. That supports the they are going to have to pay out for wrong decisions argument. being taken could in fact, depending on the Ombudsman looking into those issues, be infinitely Q69 Jim Dowd: Which authority was that? more than £180 million? Mr Young: Hillingdon Health Authority. Ms Gilley: I am not aware of how much of the £180 Ms McHale: The £180 million quite rightly is million that was identified has actually been spent. payment back to the patients, the service users Mr Burns: What the Government is saying is that themselves, but it does not take account of the cost they have put aside £180 million, which they of the social services system where potentially social anticipate is the total cost they are going to have to services has picked up a wrong decision. 3038591002 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

Health Committee: Evidence Ev 15

10 March 2005 Ms Elaine McHale, Ms Cath Attlee, Ms Yvonne Cox, Mr Michael Young and Ms Denise Gilley

Q70 Chairman: So that we fully understand the payment of reimbursement how that had worked. diYculties in those cases where you are having to go The North East, in many ways, has still got some back and look at the arrangements, and picking up very close, small communities, which are probably this point about the record-keeping, which must be diVerent from north-west London. We did have one absolutely crucial—and many of us can now instance where somebody who was a regular understand more easily why it has taken so long to attender at the local working men’s club then told deal with this matter—can you give an illustration of everybody about the payment, and the primary care a case where the records have been crucial in trust in Easington were then contacted by the club’s establishing a move to a band at a particular point? secretary, who asked if we would like to look at all I am assuming when you were talking about the of these others. The point I am making, apart from records that you need to examine the records to the fact that it is amusing, is that it did pick up some work out at what level that person should have been other people who were family people who should at any particular time. Can you think of any cases have been funded. Obviously, we were unable to where something would have triggered the move replicate that across all of the working men’s clubs between bands that impacts on the banding in County Durham and Tees Valley. We have also assessment they should have been on? done some training as well. We were fortunate to Y Ms Gilley: That is quite a di cult one because the have some money for two full-time trainers, so we banding system did not come in until 2003, so have used those in terms of making clear, as part of anybody whose case we were looking at prior to that process, that if individuals are aware of other 2003 was that they may have had some nursing need, people’s families, or whoever it may be—they need that the system of nursing home bandings and free to think about asking for their cases to be reviewed. nursing care did not exist. For those people it is very diVerent, whereas for cases after that, after that time everybody in the nursing home was being assessed, Q75 Dr Naysmith: Did you distribute leaflets to care so by definition the records would be much homes, for instance, and advertise? improved, because at the very least they would have Ms Gilley: Yes, we did produce a leaflet and have had an assessment for the banding process. distributed that widely. Our issue with the advice agencies was that we wanted to contact them Q71 Chairman: Have you made any restitution for personally rather than just send them the leaflet, but RNCC bandings? we have produced written material. Ms Gilley: No. Mr Young: We had a similar thing. We had three waves of inquiries. The first wave was the people Q72 Mr Burns: That answer is not particularly who had read the Ombudsman’s report, and those surprising because presumably the criteria have been were the ones that came before April; and I would tightened up so much that you would not expect to say that those were largely the group you would have be making mistakes since the banding came in, or by expected to have applied. The second wave was and large you should not. where each of the PCTs put out posters into nursing Ms Gilley: Yes. homes and GP surgeries asking staV as well as individuals if they were aware of anyone who might Q73 Dr Naysmith: It has been indicated to us in the have been eligible. That was also when we contacted evidence we have had that the people who have voluntary groups as well. We then got the third benefited most from the review system are those that wave, the word-of-mouth wave, when the payments are the most articulate and the most intelligent, and started coming out. The networks in north-west people who are probably most disadvantaged and London do appear to work quite well. need help are the ones who are not applying for review. What have you done to try and publicise what was going on and to encourage people who Q76 Mr Burns: Were you paying people when you might not be the ones you would expect to write found they had been incorrectly assessed, if they letters to their MPs and councillors all the time, but were dead what did you do? Did you pay it to the the forgotten ones? next of kin? Ms Gilley: We have used local advice agencies to Ms Gilley: This is the lawyer in me coming out, I am make sure that they understood the process in afraid. We actually produced some information and relation to contact, assuming they knew this was briefed all of our primary care trusts about the going on, but certainly— payments system because we needed to be clear that the payment was going to go to the right person. Q74 Dr Naysmith: That is partly the point, is it not? Where the person is deceased, you need to make sure Some of them might not even know. if it is payment of a member of family, especially if Ms Gilley: If they did not, we contacted them to say there is more than one child and a number of “this is happening and if somebody comes in this is siblings, and everybody else is agreed that it will be the kind of thing you need to say, if you want to have paid to the eldest child. Clearly, you do not want a discussion either with us at the health authority or other people coming back with issues. You would our primary care trust”. We gave them names of real have to make that process not overly onerous for people and telephone numbers to contact. Within people, so we would ask for some proofs around that, coming back to reimbursement, we cannot grants of probate, letters of administration or underestimate that where people had been made a whatever, but if people did not have those, the 3038591002 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

Ev 16 Health Committee: Evidence

10 March 2005 Ms Elaine McHale, Ms Cath Attlee, Ms Yvonne Cox, Mr Michael Young and Ms Denise Gilley primary care trusts and their finance departments Q83 Mr Burns: I do not want to labour the point, but would make inquiries to make sure the money was if the PCT was seeking to get information about fee being paid to the correct person. levels, that suggests to me that no final decision has been taken on an agreement reached between the Q77 Mr Burns: How did the money work, because individual or their families on the level of payment the Government is funding it as to £180 million, so they would accept, so you would still be in the did you have to apply to the Department of Health process, surely? I am interested in once the process every time you needed to make a payment, or could has been wrapped up and everything agreed, and a you draw on some fund? Presumably, you were not family or an individual said, “we owe you £20,000 taking the money out of the local health budget. because you were wrongly charged”—how long Ms Gilley: The health budgets are held by each of the from that point to receiving the money? primary care trusts now so the SHA does not have Ms Gilley: With all due respect, it does not happen any money any more. like that, or in our area it does not. We would say to you, if it was a member of your family, “we think Q78 Mr Burns: It has a bit. that your mother should have been fully funded Ms Gilley: Well, to employ some of the staV, yes, from 17 July last year up until two weeks ago”. The but— issue there is, if the fees had been paid in their entirety by her, then the amount of those fees is Q79 Chairman: You are voluntary, are you? relatively easy to calculate. If she had had assistance Ms Gilley: No, not yet! It was the primary care from social services and they had paid some of the trusts’ finance departments that were making the fee, given the fact that it was last year it would be payment, and they had previously had an agreement relatively easy, but had it been in 1997 it would from the Department of Health about the amount of require some digging to find out what the money for each of the PCTs, so they knew that they contribution had been, and if it was over a number were drawing the money against an allocation. of years or over a time when fee levels had changed.

Q80 Mr Burns: But the allocation was a ring-fenced Q84 Mr Burns: There comes a point when that one, was it not? information is discovered, and a proposal is put to Ms Gilley: Yes. the individual or their family as to what you should believe should be the payment to the individual. Q81 Mr Burns: What was the average time between Ms Gilley: Yes. agreement between a family or an individual and the assessors about that there had been a wrong decision Q85 Mr Burns: At that point, when the individual or and the amount that was going to be paid to them, family receives the agreed money— and the actual physical paying of the money? Was it Ms Gilley: Very, very quickly once the amount of a swift procedure, or were they having to wait money had been agreed. The point I was making is months? there could be some gap between saying money is Ms Gilley: If it was a local decision where the owed for a period, and then receiving money, but primary care trust and social services reviewed the less of a gap between saying “we have agreed it is X decision and agreed that somebody was to receive amount of money” and then the cheque. restitution, then that process would be generally Dr Taylor: I really only want some written quite quick. I say “generally” because there were clarification if it is too long to answer, but I was very some exceptions in terms of looking back to find out bothered when Ms McHale mentioned the diYculty amounts of money that had been paid, and of payment by results. Would it be possible to sometimes that was a diYcult process, particularly expound that in writing because it is terribly where fees in an establishment had been in part met important that we do know how that impacts? by the individual and part by social services. Barring that, those payments were quite timely. Where Q86 Chairman: When I was talking about people appealed to the strategic health authority to demarcation, you said your staV were employed in say they did not agree, then obviously it would take what sounded like a multi-disciplinary arrangement, longer if our appeals process then did go back and employed in the same set-up. Can you explain how say the person had met the criteria for a longer you operate briefly? period. Ms Attlee: In my patch we have joint commissioners for adult care, for older people with learning Q82 Mr Burns: What is your estimate of “quite disabilities, mental health and disabilities. Those quick”. joint commissioners are jointly employed by social Ms Gilley: It sounds as though I am prevaricating services and the PCT to commission services for hugely, and I am not, but it could be very quick in those people from both PCT budgets and social terms of a number of weeks between a family being services’ budgets, so although we do not have a given a decision or being asked to produce evidence section 31 pooled budget, those individuals are and then receiving the money. In instances where it responsible for both halves of the budget. So the was diYcult for primary care trusts to get issues around, “is it going to save this one or that information about fees paid, it could take some time. one?” are not an issue in that sense. Obviously, we That process is very similar to trying to get clinical have a whole system concern about the pressure on information assessments really. the budgets, and that is a continuing pressure that we 3038591002 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

Health Committee: Evidence Ev 17

10 March 2005 Ms Elaine McHale, Ms Cath Attlee, Ms Yvonne Cox, Mr Michael Young and Ms Denise Gilley are tackling in terms of getting best value from the Ms Attlee: I think it is fairly common but not market, getting the best nursing home universal. accommodation or residential accommodation, and the best packages for our clients. However, we are doing that together, not separately and competing. Q88 Chairman: I notice Ms McHale was shaking her The panel that oversees the long-term placements head, which does not surprise me. and the funding decision is chaired by either a joint Ms McHale: Is that what surprises you—that I am commissioner or one of the social services colleagues awkward and do not agree? with a jointly commissioned panel, with joint commissioners on that panel as well as individual clinicians and social workers. There is always a Q89 Chairman: No, because I knew about the local collective decision about the appropriate placement practice obviously. and what is the appropriate funding. Ms McHale: It is diVerent definitely. Chairman: Thank you all for an excellent session. It Q87 Chairman: In your experience, how common is has gone on longer than we anticipated, but we are that system elsewhere? most grateful to you.

Memorandum by Age Concern (CC 29)

1. Introduction 1.1 Age Concern England (the National Council on Ageing) brings together Age Concern organisations working at a local level and 100 national bodies, including charities, professional bodies and representational groups with an interest in older people and ageing issues. Through our national information line, which receives 225,000 telephone and postal enquiries a year, and the information services oVered by local Age Concern organisations, we are in day to day contact with older people and their concerns. 1.2 We welcome the fact that the Health Select Committee is holding an inquiry into continuing NHS health care, as the lack of clarity as to who qualifies for such care is a source of considerable confusion and distress to older people and their families. Our information line sent out 2,500 copies of our factsheet on the subject from April 2004 and took over 300 enquiries about continuing NHS health care. Immediately following the initial Ombudsman’s report in February 2003 we received many hundreds of enquiries. Local Age Concerns also receive many enquiries. Information and advice workers and advocacy workers have received training in order to meet the needs for advice by older people and their families for help in pursuing their cases. In some areas Age Concerns have oVered a specialist advocacy service to help people resolve their cases locally and if necessary take them to the Ombudsman. Indeed, one of the cases reported by the Health Service Ombudsman in December 2003 was a complaint which a local Age Concern had taken on behalf of an individual. We have therefore developed a considerable knowledge of the current system and the problems people face with the diVerent criteria and assessment tools that have been developed, in the administration of assessments, and dealing with reviews. 1.3 We submit evidence firstly on the four areas which the Health Select Committee is specifically examining. We look at areas that we consider will need to be addressed if the system for continuing NHS health care is to become more transparent, and if the NHS is to properly meet its legal responsibilities to fully fund the care of those whose primary needs are for health care rather than for accommodation and personal care. 1.4 Secondly, we submit as an Annex evidence from Age Concern Oxfordshire. This is because Age Concern Oxfordshire has been funded by Thames Valley Strategic Health Authority to provide an advocacy service to help patients, relatives and carers in relation to retrospective payments of continuing NHS health care. They have therefore developed a unique and detailed experience of the way one SHA has operated, and can make comments on the way that having an advocacy service has worked.

2. Summary

The written Ministerial statement on NHS continuing care 2.1 Age Concern welcomes the statement, although it is still ambiguous as to whether or not the intention is to have one set of national criteria and one assessment method for continuing NHS health care. We consider that this is the only way to begin to get a nationally consistent approach, and that it should cover all four of the devolved administrations. We have some concerns about phrases used in current criteria and also the way the assessment tools may lead to restrictions. We also do not think any national criteria can be developed without a major revision of the Registered Nursing Contribution. The setting of the criteria for bands of nursing care has added considerably to the confusion of patients and staV alike. We recommend 3038591003 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

Ev 18 Health Committee: Evidence

that the Government revises the RNCC as a matter of urgency. We consider that there should be full public consultation in line with Cabinet OYce Guidelines. Any new criteria/assessment method should measure against the tests described in the Coughlan judgement, known as the quantity/quality tests, and it be clear to the public when their primary need is for health care.

How the changes will build on work already undertaken by Strategic Health Authorities 2.2 From the enquiries we receive, we are concerned that there are some systemic problems, although we appreciate we largely only hear from people who are dissatisfied with the way their case has been dealt with. We have little confidence that the Delayed Discharge (Continuing Care) Directions introduced in February 2004 are routinely being followed. We are concerned that individuals not in a hospital setting have even more diYculties accessing a continuing NHS health care assessment. All relevant staV caring for people in all settings should be alert to the possibility of eligibility for continuing NHS health care. It should not be necessary for the individual to ask. Care home staV should also have a responsibility to alert the NHS if they consider the person in their care might qualify for continuing NHS health care. 2.3 The process of challenging a continuing NHS health care decision is complex and places many hurdles on the way. This can happen right from the start. We have many examples of statements made by staV that can only be described as fobbing people oV. Information given to people varies between SHAs, with some giving clear information about the right to request a review, others being far less forthcoming. Once getting to the review stage it can be a lengthy and complex procedure, with various additional panels prior to getting to the SHA panel. If that fails, the individual is then faced with going back through the complaints process, both at the local level and at the Healthcare Commission, before being able to access the Ombudsman’s service. Some panels are held without informing patients or relatives or inviting them to attend.

Whether the reviews of past funding decisions had addressed those wrongly denied funding 2.4 We are aware of very large variations in numbers of cases found. This may have a number of reasons, but we are concerned that diVerent practices developed in diVerent SHAs about how proactively cases were sought, and the breadth of any search. In some areas it seemed mainly confined to those who complained. We are convinced that many people will not have been considered especially if they were in a residential care home or in their own homes. In some cases relatives did not wish to take matters forward as there were concerns that the individual may have to move if they did get continuing NHS health care. Some SHAs were reviewing cases before they had finalised their criteria. We have also come across cases of considerable delays in paying the restitution and conditions being imposed on accepting the money.

What further developments are required to support the implementation of a national framework? 2.5 The attitude of NHS staV needs to be addressed so that continuing care is not seen as marginal to the main concerns of the NHS meeting the acute sector performance targets. Training for all staV will be required both within the NHS and staV in care homes and in social services departments. It should be rights based, screening people in rather than screening them out. It should also recognise those situations where improvement has been caused by the fact that the person is receiving the care that they need. Funding should not be reduced if, without that level of care, there could be a deterioration. Once there is a national framework there will also need to be careful consideration of education and information to the public. With a national framework there is a role for the Department of Health to produce clear information for the public. The development of a new national framework gives the opportunity to bring some clarity about whether it is possible to draw a line between health and social care.

2.6 Recommendations On policy: — That both eligibility criteria and any assessment method are set on a national basis across the UK. — That the Registered Nursing Care Contribution is revised as a matter of urgency as part of this process. — That any new national criteria should measure against the Coughlan quantity/ quality test and ensure that care is free if the primary need is for health care. — That there is full public consultation following Cabinet OYce guidelines. — That in future documentation kept on patients in any setting, should have built into it a consideration of that patient against the criteria for continuing NHS health care on at least a six monthly basis. This should then trigger a full continuing care assessment if the individual is nearing the criteria. 3038591003 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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— That the Department of Health considers the position of people who are already in care homes and who do not want to move just because of their change in status, or where a move would be detrimental to them. Changes to the legislation may be needed to allow greater flexibility to enable individuals to receive the care they need without having to move. — The Healthcare Commission should introduce performance indicators and monitor this aspect of the NHS responsibilities. — Funding should be adequate to ensure that the NHS can properly meet all its responsibilities including continuing care. On process: — That the Department of Health monitor compliance with the Delayed Discharge (Continuing Care) Directions to ensure that no patient leaves hospital to go into a home that provides nursing care without first having had a continuing care assessment and then, if necessary an RNCC assessment. If a patient does not receive a continuing NHS health care assessment, clear reasons for not undertaking such an assessment should be given to the patient and their carers and recorded on the case file. — That the Department of Health monitor compliance with the Continuing Care (NHS Responsibilities) Directions for individuals in other settings to ensure that individuals needs for continuing NHS health care are picked up promptly wherever they live. — Review panels should be open to the complainant, or their carers, to make representations in written form and in person and it be clear what evidence has been scrutinised. — In view of the complex nature of the process advocates should be made available to support those who disagree with continuing care decisions and who wish to use the review process. — Review cases should be dealt with within certain time limits and the process be streamlined to avoid excessive numbers of processes before being able to go to the Ombudsman. — The Health Care Commission should fast track continuing care cases and should consider setting up specialist teams to develop expertise in decision- making in continuing NHS health care cases. In relation to past cases: — That the Department of Health seek information from each SHA what measures it took to advertise the fact of reviews and on what basis it decided which cases to review. In particular, it should seek information about the basis of reviews in settings other than care homes providing nursing, and whether reviews were undertaken where a person was funded by social services. — That clear information should be produced by each SHA (and once there is national criteria by the Department of Health), explaining the types of health need that would be likely to meet the criteria for fully-funded NHS care, and to invite people to come forward if they think that at any time since 1996 they, or their relative, may have met that criteria. On training and information: — That training of staV is rights based aimed at screening people in rather than screening them out, and should counter the misperception that the NHS is no longer responsible for long term health care. — That staV in all relevant trusts and social services receive training so that they are always alert to the possibility that a person, wherever they are, might be eligible for continuing NHS health care. — That staV in care homes receive training to recognise when individuals may meet the criteria for continuing NHS health care. — That the Department of Health produce leaflets to explain who can get continuing NHS health care, and SHAs produce leaflets about the review process and who to contact if you want to pursue a review.

3. The Written Ministerial Statement on NHS Continuing Care Issued by Dr Stephen Ladyman on 9December 2004 3.1 Although Age Concern welcomed the statement made by the Minister, “to develop a national consistent approach to assessment for fully funded NHS continuing care”, it is still ambiguous. There is already a national framework provided by the current guidance, but it is left to the 28 Strategic Health Authorities to interpret this framework with their own guidance and equally problematic in our view, with their own assessment tools. 3.2 In our view, the only way to begin to get a national consistent approach, and by national we would consider that this should cover all four of the devolved administrations, would be to produce national eligibility criteria which includes a national method of assessment. Both would need to be compliant with the law and case law and not be unduly restrictive. 3038591004 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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3.3 We were concerned that the Minister in his statement said “all the current criteria are fair and legal”. Although many of the criteria follow the wording of the 2001 guidance, which in itself was criticised by the Ombudsman, some contain phrases that would appear to make it more restrictive than the guidance. For instance, one set of criteria includes: — “requirement for the constant attention of a qualified nurse and constant availability and access to medical expertise 24 hours a day”; — “existence of a high degree of dependency on nursing care by persons who have a condition that fluctuates unpredictably and which without frequent and prompt intervention by access to a NHS team might lead to death, deterioration or severe distress”; and — “evidence of dementia, impaired capacity, mental ill health, confusion, challenging behaviour and complex needs which cannot be managed in the community and requires care in a specialist nursing home, and requires supervision of a consultant or members of the psychiatric multidisciplinary team.” 3.4 All the above terms apply restrictions that are beyond those in HSC 2001/15. Even though the guidance indicates that these are only examples and the lists are just to be utilized as a general guide, it gives an impression of a level of health care needed that does not adequately reflect the quantity/quality test as described in R v North and East Devon Health authority ex parte Coughlan. 3.5 Even if the criteria does not deviate from the wording of the national guidance, some assessment tools may lead to further restrictions. Age Concern was recently sent a “threshold tool kit” where individuals were scored. It stated that individuals may be the responsibility of the NHS if three or more of the domains have a weighting of 100, or five or more of the domains have a weighting of 60 or more. The particular individual who had suVered a serious stroke was denied continuing NHS health care having scored: — 100 as she was unable to communicate even when prompted. — 60 because she had a high level of cognitive impairment which requires specialist management to reduce the risk. — 50–60 because of erratic behaviour; shouts and screams at times most days needs management. — 50 because she requires a hoist and is unable to assist or co-operate with transfers and/or respositioning. — 80 because of incontinence of faeces and has a catheter for incontinence of urine. — 20 because she had medium risk of pressure sores. — 60 because her medication needed monitoring by a qualified nurse because of the potential instability of the medical condition. — 50 because she needed PEG feeding, although could take diet at times. Not surprisingly, her husband was unable to understand why his wife’s health needs were not considered enough both in terms of quantity and quality to warrant being funded by the NHS. Interestingly, the toolkit was titled “elderly and physical disabilities” which begs the question whether other client groups have a diVerent measurement. Age Concern has seen draft assessment tools which seemed to have stricter hurdles to obtain continuing care for older people, but that was in the early stages following the Ombudsman’s report. 3.6 Age Concern does not think that the continuing NHS health care criteria can be considered in isolation. We consider that it is of paramount importance, when looking at a national consistent approach to continuing NHS health care, that the Registered Nursing Care Contribution (RNCC) is also revised. The criteria for the highest band is set at a level where neither Pamela Coughlan, nor the gentleman in the original “Leeds Ombudsman case” would be likely to qualify (and indeed may have had diYculty in obtaining the middle band). This has caused considerable confusion to health staV and the public. 3.7 The terms “complex, unpredictable, unstable, frequent intervention” appear in both sets of guidance. The guidance on nursing care says that the use of similar terminology should not be confused with guidance for continuing care, but it is impossible to see how it cannot be confused. The definition for the highest band is: “high needs for registered nursing care and have complex needs that require frequent mechanical, technical and/or therapeutic interventions. They need frequent intervention by a registered nurse throughout a 24 hour period, and their physical/mental health state will be unstable and/or predictable.” 3.8 It is diYcult to see how such a person is not one whose primary needs are for health car, rather than for accommodation and personal care. As such, they should qualify for continuing NHS health care. Yet routinely such people are being assessed by registered nurses using their workbook, which contains examples, as only needing the highest band of nursing rather than needing continuing NHS health care. 3.9 One of the examples in the workbook used by nurses is almost identical to a case in the Ombudsman’s report of February 2003 which was about a woman who had several strokes and as a result had no speech, was deaf, was partially sighted and had little comprehension, required PEG feeding, almost completely immobile and doubly incontinent. 3038591004 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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As the Ombudsman pointed out in that case “I cannot see that any authority could reasonably conclude that her need for nursing care was merely incidental or ancillary to the provision of accommodation, or of a nature one could expect social services to provide”. Yet a nurse using the Department of Health workbook would be likely only to consider the highest rate band of RNCC. 3.10 Lastly, any single national eligibility criteria must have a full public consultation following the Cabinet OYce guidelines for the way in which it is conducted. Both the 2001 Continuing Care Guidance and the “Free nursing care guidance” suVered because there was little consultation with a broad spectrum of stakeholders. We realize that there will be an amount of work relating both to the criteria and practice and we hope that stakeholders will be involved at an early stage in the development of more consistent approach to assessment. Any new criteria/assessment method that may emerge from this exercise should measure against the Coughlan quantity/quality test and whether care would be free to all those whose primary need is for health care. Once there is national criteria we would hope that never again would a relative be told unprompted (as was reported to us recently) by a senior member of NHS staV “Pam Coughlan would not have got continuing care in this hospital.” 3.11 Recommendations: — That both eligibility criteria and any assessment tools are set on a national basis across the UK. — That the registered Nursing Care Contribution is revised as a matter of urgency as part of this process. — That there is full public consultation following Cabinet OYce guidelines. — That any new national criteria should measure against the Coughlan quantity/quality test and ensure that care is free to all those whose primary need is for health care.

4. How the Changes will Build on the Work already Undertaken by Strategic Health Authorities in Reviewing Criteria for NHS Continuing Care and Developing Policies 4.1 We are aware that having just 28 criteria has represented some improvement from the previous 95 criteria, although as we have stated above, we have concerns about some of the current criteria and the way they are implemented. In this section we wish to concentrate on our experience of how the current administration of the system is working, from the enquiries we receive. We are aware of course that the process can work smoothly, and that some people appear to be able to access continuing NHS health care without having to request it, based on an assessment undertaken while the person is in hospital. However, from the enquiries we receive it would appear that there are some systemic problems across the board in the current administration of assessments for continuing NHS health care. These will need to be addressed if there are to be improvements in the way cases are handled.

Establishing whether the person meets the criteria 4.2 We have very little confidence as to whether continuing care assessments are carried out according to the Directions when a person is in hospital. We get numerous enquiries from relatives of people leaving hospital and moving into a care home providing nursing care. When asked if their relative has had either a continuing care assessment or an RNCC assessment the answer is usually either no, or they don’t know. All they have been told by the hospital is that they will need to find a care home with nursing and they will have to pay for it. One case clearly highlights this. A relative went to visit his wife, having been previously told that he would have to find a nursing home because of “bed blocking”. He was in the process of looking for one, but had not yet decided. He had been unable to find out anything about who would help with funding. On that day, 28 September 2004, he found that his wife had been made ready to leave and there was an ambulance waiting to take her to a nursing home. He was told he would have to pay for the care home. A letter to a range of hospital staV dated 21 September started the assessment for continuing NHS care. However, the majority of the hospital staV did not complete their assessments until the end of October, nearly a month after the patient had left the hospital, and the rest were completed in November. Her husband was informed of the decision not to grant continuing NHS health care on 10 December 2004. Some time later he was informed that she would receive £125 towards her nursing costs. 4.3 We are concerned that the situation may be even worse if the patient is not in hospital where at least the staV should be geared up to making decisions about discharge and follow practices which are compliant with the Directions and discharge guidance. There seems to be little opportunity for review of cases from the point of view of whether a person’s condition has worsened to the extent that they now fall within continuing NHS health care criteria. If a person is in their own home, or in residential care, or in a nursing home, it appears that the level of the NHS responsibility is only considered if the person specifically asks for a continuing NHS health care assessment. 4.4 NHS nurses undertaking the RNCC review in a care home providing nursing care are, in theory, supposed to consider first whether the person fits the continuing care criteria, although anecdotally we hear this is not always considered. Those in residential care or at home will largely be reliant on GPs and district nurses to pick up whether they should be fully-funded by the NHS. In spite of the guidance saying that where a person lives is not determinative, there does not appear to be much awareness of continuing NHS health 3038591004 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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care other than in nursing homes or hospital. All relevant staV who are caring for people in all settings should be alert to the possibility of eligibility for continuing NHS health care. In our view, it is not something that people should have to ask for, but should be picked up on routine health checks, or when NHS personnel have been called in to assist with a person’s condition. 4.5 This should also apply to social work staV who should be responsible for alerting the NHS to people who might qualify. This is especially important where a person is in residential care or receiving care in their own home, but in fact all the care should be the responsibility of the NHS because the needs are all health needs no matter who provides the care. 4.6 Care staV in care homes should also have a role to play, as often a person’s condition may deteriorate over time and they start to fall within the criteria. We would hope as well, over time that it might become a registration requirement for care homes to alert the NHS if they consider a person in their care might qualify for fully funded NHS care based on national criteria.

The review process 4.7 The process of challenging continuing NHS health care decisions remains one that only the stout- hearted can face. We have serious concerns about the system which put so many hurdles in the way of obtaining a conclusion which is clear and gives individuals enough information to know whether it is worth taking a challenge forward. The initial hurdles can so often start with what relatives are first told by staV. We hear of many cases where the person is told that it is not even worth thinking about continuing NHS health care, such as “it is only for palliative care”, “you have to be nearly dead to get it” “well you can ask but you won’t get it as no one does,” “you don’t stand a chance unless you are on the highest band of nursing.” In one case, a doctor told a relative that his mother had not lived long enough in the area to get continuing NHS health care! These sorts of comments are reported to Age Concern so frequently that we have started to call it the “fob-oV factor”. We rarely come across cases where relatives are totally unrealistic about who should get continuing NHS health care, mostly their relatives have significant health needs. 4.8 Some SHAs have worked hard to produce clear leaflets explaining the right of review. Others seem to be far less forthcoming. One relative was told recently firstly that she had no right to ask for an assessment, it was for the discharge team to decide; that it was not practice to give relatives the criteria and assessment tools and they were not sure if they were public; that there was no right to appeal and nobody had ever appealed a decision as the hospital was never wrong; it was not relevant to know how many people had got continuing care—eventually it was admitted it was less than four from that hospital. 4.9 If there is a review it can be a lengthy and complex procedure. It appears that in many areas there is an additional review panel at PCT level before getting to the SHA panel. The regulations and directions only specify that there has to be a SHA panel to hear reviews. It can be seen as another hurdle to jump before getting to the case considered by the SHA panel. 4.10 We have heard many diVerent reports about the nature of the panels. Some allow representations from relatives and appear to accept a wide range of evidence. In one area, an Age Concern described the review panel as “behind closed doors” with relatives not knowing what evidence has been considered and the decision not giving any real reasons. In the report attached to this evidence, Age Concern Oxfordshire raises concerns about the fact that only contemporaneous care notes are accepted (see Annex). 4.11 We often get reports of relatives only being told verbally of any decision by the panel. We consider that SHAs and PCTs should take on board the comments made in the judgement The Queen on the Application of Goldsmith and the London Borough of Wandsworth Community Care Law Reports, December 2004. This case looked in detail at the way a continuing care panel was conducted. SHAs should alter their processes to ensure that there are proper records of discussions and recommendations, that only the relevant issues are considered (in this case cost had been raised), and that relatives should be allowed to make their representations in person if they wish to. 4.12 If the person is unhappy with the decision made by the SHA panel they then have to start again through the complaints process, by firstly making a formal complaint to the NHS body for local resolution, then if that does not succeed, they can make a formal complaint (since July 2004) to the Healthcare Commission. As yet it is too early to make comments on the way complaints about continuing care decisions are handled. We do though have grave fears about possible delays due to the backlog of some 4000 cases, and the way continuing care cases may be prioritised. We also have concerns about how quickly the commission will be able to build up expertise in handling complaints about decisions on continuing NHS health care. In many ways the Healthcare Commission handling complaints on a national basis may well need to do what the Ombudsman has done and have a specialist team to deal with continuing care complaints. 4.13 It is only after going though all these stages that the person may at last be able to take their complaint to the Ombudsman. By the very nature that these cases involve people who have serious health problems, there should be some way of simplifying this cumbersome system to allow much quicker complaint resolution. 3038591005 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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4.14 Recommendations — That the Department of Health monitor compliance with the Directions to ensure that no patient leaves hospital to go into a home that provides nursing care without first having had a continuing care assessment and then, if necessary, an RNCC assessment. If a patient does not receive a continuing care assessment clear reasons for not undertaking such an assessment should be given to the patient and their carers and recorded on the case file. — That the Department of Health monitor compliance with the Continuing Care (NHS Responsibilities) Directions 2004 for individuals in other setting to ensure that their needs for continuing NHS health care are picked up promptly wherever they live. — That staV in all relevant trusts and social services receive training so that they are always alert to the possibility that a person wherever they are, might be eligible for continuing NHS health care. — That it should in time be a regulatory requirement that care staV in care homes regularly undertake assessments against the national criteria and alert the NHS about residents who appear to be nearing the criteria. — That the Department of Health produce leaflets to explain who can get continuing NHS health care, and SHAs produce leaflets about the review process and who to contact if you want to pursue a review. — Review panels should be open to the complainant, or their carers, to make representations in written form and in person and it be clear what evidence has been scrutinised. — In view of the complex nature of the process, advocates should be made available to support those who disagree with continuing care decisions and who wish to use the review process. — Review cases should be dealt with within certain time limits and the process be streamlined to avoid excessive numbers of processes before being able to go to the Ombudsman. — The Healthcare Commission should fast track continuing care cases and should consider setting up specialist teams to develop expertise in decision- making in continuing care cases.

5. Whether the Review of Past Funding Decisions has Succeeded in Addressing the Needs of Patients Wrongly Denied NHS Funding for their Long Term Care 5.1 Many of the problems of the process described above have also been in evidence for the retrospective reviews, but with some additional areas of concern. Both the report commissioned by the Department of Health into nine SHAs and the follow-up report by the Health Service Ombudsman have highlighted many of the concerns that we have about the way the reviews were handled. We appreciate the enormously diYcult job that SHAs were facing, having to both develop convergent criteria across the SHA and to deal with all the reviews. 5.2 We have appended a report from the Independent Caseworker at Age Concern Oxfordshire which gives details about the retrospective review process in that area and the work that was undertaken by Age Concern in supporting some 100 people with their cases. 5.3 Our main concern is the way that cases were found. We are certainly aware that in some areas patients/relatives received communications “out of the blue” to say that their case would be investigated which indicated a proactive approach. In other areas though it appears much more that the only cases considered were those where the relative approached the SHA. A note from a board meeting of Thames Valley SHA reflects this diVerence in approach. “The proactive approach being taken by TVSHA to identify these ‘long list’ clients appears to be in contrast to the approach being taken by some SHAs elsewhere in the country, and where the only cases being reviewed are those where the client or their representative have approached the SHA (or PCT) requesting a review. It also appears that some SHAs/PCTs only investigate cases where the client or their representative provides the documented file information (copies of nursing home notes, GP notes etc) to support the appeal”. Board Paper 40/04 July 2004. 5.4 We had reports that some areas would only automatically review those individuals who were on the highest band of nursing. One care home owner who helped her residents apply for continuing NHS health care found that the relatives were told they would not be eligible as they were in a residential care home rather than a nursing home (of the three who applied one has now had a favourable ruling). We suspect there may have been even less ability to find cases where people were being cared for at home. We therefore have grave concerns which are reflected in the report on the 9 SHAs that there may still be a need to seek out cases. We share worries that those with assertive relatives will have had an advantage over those who either do not have relatives, or whose relatives did not feel able to take the case forward. 5.5 Age Concern also came across a few cases where relatives were considering asking for a review but in the end decided not to take matters forward as they had been told that if they got continuing NHS health care then the person would have to move to another home, either because the home the person was in was not one with which the NHS contracted locally, or because it was more expensive than the NHS was 3038591005 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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prepared to meet. In some cases, we found that where the NHS had agreed to provide continuing NHS health care there were problems if the home was dearer than the price the NHS was prepared to pay. In some cases a certain amount of ingenuity was needed in order to allow the resident to remain in the home.

5.6 As reflected in the report commissioned by the Department of Health we had many queries about the evidence that the SHAs were prepared to accept. Some appeared only to accept what had been written at the time, so even if there were nurses who remembered the patient well and could have added to the full picture this was not accepted. In some cases relatives gave up because there were no notes because of the home closing or records missing. We also came across situations where the notes within the care home left a lot to be desired and hope that this exercise will lead to an improvement in record keeping across the board.

5.7 In some areas it appears there was a much more proactive approach taken by social services than in other areas in relation to clients who had been partly funded by social services. In part, it seems there was the mistaken belief that it did not really make any diVerence to the individual because they had obtained funding from social services. However, this neglected the fact that individuals had been charged out of their capital if they had above a certain amount of capital, and all of their income was taken into account. As this income could have been made up if a combination of benefits and occupational pensions, the person could still have lost out on a considerable amount.

5.8 Throughout the time that most of the reviews were being carried out, there were still discussions going on in many areas about the criteria and assessment tools. Even as recently as January 2005, relatives in two areas have been given criteria or assessment tools that are headed “Draft-Pilot” and “Revised”. This does not give relatives confidence that the goalposts might not change again, or that the SHA is completely happy with their method of assessment. On one occasion, we were sent an assessment by a relative using forms that did not match the most up to date criteria and tools being used (which were on the website), so it would appear that there may have been some occasions when staV undertaking the assessments were not aware of changes as they were happening. We are aware of one area still consulting on its criteria, so it is diYcult to see how they can have undertaken all their reviews on criteria that is still in the process of being changed.

5.9 Even when people have been told that they have been awarded a retrospective payment there have been considerable delays before the payment was made. We are also concerned about the way some SHAs have imposed conditions on relatives before they send a cheque for recompense. We have heard of several cases where one of the conditions was that they should treat the payment in confidence and not inform anyone other than their legal advisers. This implies that the SHA wants to keep who gets continuing NHS health care a secret, and debar relatives from sharing the fact that they have been successful—and thus perhaps encouraging others who are in a similar position. We appreciate that in the business world there may be reasons for wanting to avoid any detriment that may come from having made an error but this is not the case with public authorities. There have also been terms such as full and final settlement and a clause that would debar the relative from seeking to claim for periods that have not been agreed. The problem that leaves the resident with is whether not to accept the amount oVered (which may run into the tens of thousands) and start the whole lengthy process for the part that still has not been agreed, and perhaps even the risk of losing what has been granted.

5.10 Recommendations

— That the Department of Health seeks information from each SHA regarding what measures it took to advertise the fact of reviews and on what basis it decided which cases to review. In particular, it should seek information about the basis of reviews in settings other than care homes providing nursing, and whether reviews were undertaken where a person was funded by social services. — That clear information should be produced by each SHA (and once there is national criteria by the Department of Health), explaining the types of health need that would be likely to meet the criteria for fully-funded NHS care, and to invite people to come forward if they think that at any time since 1996 they, or their relative, may have met that criteria. — That the Department of Health considers the position of people who are already in care homes and who do not want to move just because of their change in status, or where a move would be detrimental to them and, if necessary, make changes to the legislation and the care standards that allows greater flexibility, to enable individuals to receive the care they need without having to move. — That in future any documentation kept on patients in whatever setting, on at least a six monthly basis, should have built into it a consideration of that patient against the criteria for continuing NHS health care, in addition to the day to day care management hand over notes. This should then trigger a full continuing care assessment if the individual is nearing the criteria. 3038591005 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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6. What Further Developments are Required to Support the Implementation of a National Framework 6.1 In addition to the above recommendations that we have suggested to the Committee, we consider that the following will be essential in developing a national framework. 6.2 There needs to be a major consideration of the way that the NHS has evolved and withdrawn from providing long term health care. It was very telling that in the report commissioned by the Department of Health it was stated that the raised profile of continuing care “could be short lived and that continuing care remained marginal to the concerns of SHAs, which are dominated by performance management in respect of the acute hospital sector”. This attitude needs to be addressed and continuing NHS health care be seen as an integral part of the National Health Service. Undertaking continuing NHS health care assessments is not just an add on but should be seen as a way to ensure that people receive their entitlements to free NHS care, but also to the quality/quantity of the care that they need. The Healthcare Commission should introduce performance indicators and monitor this aspect of the NHS responsibilities. Funding should be adequate to ensure that the NHS can properly meet all its responsibilities including continuing care. 6.3 We have stated above there needs to be a well thought out training programme of all staV who are involved with individuals, especially those who might be in the position to pick up that a person should be considered to be the full responsibility of the NHS. This will include a wide range of staV within all parts of the NHS, within care homes and within social services. Training programmes should be essentially rights based and geared to screening people in rather than screening people out. It also needs to recognise that where the health care needs are being met the person may improve, but this should not necessarily be a reason to withdraw funding, because without that provision of health care the person’s condition may well deteriorate. 6.4 We also hope that the work to take the national criteria forward which involves a number of streams will include a wide range of stakeholders including users and representatives of users, and representatives of the legal profession who have been involved in challenging the criteria and decision making. Given the comments made about the national criteria both in the Courts and by the Ombudsman, it is essential that the third attempt to set the boundaries between health and social care is on that can be widely accepted. 6.5 We realise the Health Select Committee is only inquiring into NHS continuing care, but it does raise the whole issue of health care being free and social care being paid for, and all the diYculties of the health/ care divide. We hope that this exercise may again bring into focus the virtual impossibility of making any sensible division between health and personal care and open up the debate of whether personal care should be free. 6.6 We will be willing to give oral evidence should the Committee so wish. February 2005

Annex

Evidence from Age Concern Oxfordshire to the Health Select Committee

1. Introduction 1.1 This report has been compiled by Age Concern Oxfordshire. Age Concern Oxfordshire was funded by Thames Valley Strategic Health Authority (TVHA) to provide independent support and advice to Oxfordshire clients going through the Retrospective review of 100% NHS Continuing Care funding decisions. 1.2 For the past 18 months an adviser has been on a dedicated contract to fulfil this role. To date the adviser has worked with over 100 clients in Oxfordshire who have been having their cases reviewed. 1.3 StaV at Age Concern Oxfordshire and TVHA have worked very closely together over the past 18 months to ensure that a) the review process was fair and equitable to all clients who may have been wrongly denied funding and b) that clients (and their families) were given the best possible opportunity to present their “case” for assessment. 1.4 The adviser was allowed full access to client records held by TVHA as well as TVHA’s own records of individual reviews. 1.5 This report therefore only pertains to experience and facts of the processes in Oxfordshire. 1.6 Assistance given to clients included: — Providing a full explanation to the clients about the review process and background of the review. — In depth explanation about 100% NHS continuing care funding and how it fitted with RNCC and other forms of funding for care. — Assisting clients to obtain further evidence to establish their health care needs. — Helping clients to prepare reports, responding to the reassessment of their case by the TVHA, to be submitted alongside the TVHA report to the panel for the final decision. 3038591006 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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— Undertaking informal challenges of decisions, enabling the TVHA to reassess the case based on further evidence, or other subject of the challenge. This ensured that there were no further matters or evidence outstanding when the case went to the Panel for the final decision. — Assisting clients in gathering acceptable evidence of care charges paid out in order to quantify restitution payment. — Challenging issues of restitution payments and content of waiver statements. Investigating and explaining the aVects of welfare benefits on restitution and vice versa. — Corresponding with the Health Ombudsman to obtain advice about policies being applied by TVHA where Age Concern believed that the policy was inconsistent with underlying intention of the Ombudsman’s report. — Assisting some clients who wished to take their case to the Ombudsman. Most of these cases have yet to receive a final outcome.

1.7 The provision of an independent advice and support service has proved invaluable in Oxfordshire, with enormous benefits to both the TVHA and the clients. A number of clients would not have received restitution without help from the independent source.

2. Whether the Review of Past Funding Decisions has Succeeded in Addressing the Needs of Patients Wrongly Denied NHS Funding for their Long-term Care

2.1 Whilst the review of past funding decisions has gone some way to address the needs of those previously denied funding, not everyone who has been wrongly denied funding has been awarded or received restitution.

2.2 Only contemporaneous written evidence is accepted as evidence by the reviewers. Information provided today to interpret, back up, explain or clarify notes written at the time, even if provided by the health care professionals who were giving the care at the time, is generally disregarded in the review. This has proved particularly frustrating where the standard of care notes that have been used as evidence for the review have been scanty using standard phrases, eg “all care given” to describe a range of nursing care and intervention that has been provided to the individual; “daughter took her for a walk” with no mention of the fact that the lady in question was in a wheelchair. Care home staV have explained that because the notes were available to be read by family members, this aVected what notes were written at the time as a fully detailed explanation of the care provided and reason for it would have upset family members if they read the notes when they visited.

2.3 The interpretation of care home notes is often taken too literally by the reviewers. For example an entry by a nurse stating that “Mr X was fine today” may be interpreted to mean that Mr X had no real nursing needs that day, in fact the term “fine” is very subjective. “Fine” for Mr X on that day may have meant full nursing care and intervention of a very complex and intense nature but nothing “out of the ordinary” for him.

2.4 Written evidence has not always been available due to a number of reasons: — 60,000 GP patient records held in a store in Southampton being destroyed by a fire and therefore unable to be used as evidence. — Care homes having closed down and their records no longer being available. — A generally poor standard of care home notes, only providing general information see 2.1.

2.5 Reviews were only made of clients who requested a review. However, due to lack of awareness and understanding in the public arena and lack of accurate publicity about the review, many people who have paid for care themselves may not have come forward to request that their case be reviewed and will have fallen through the net.

2.5 Reviews were originally to be made of all clients who had come into contact with Social and Healthcare staV, however, that would have included a further 1,500 clients. Due to pressures on TVHA to complete the review in a shorter timescale these plans were dropped in June 2004.

2.6 Payments are only made up to October 2001. From October 2001, when RNC assessments started, TVHA believed anyone who was entitled to 100% NHS continuing care would have been identified by the new RNCC assessments and fairly assessed for NHS Continuing Care. The service therefore had to assist some clients who considered that they had been wrongly assessed to be further considered against the current criteria. 3038591006 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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2.7 When Restitution Payments are made, interest is only calculated up to the point that the person died, not to the point at which the decision was made to award funding. The individual can have died at any point up until October 2001, thus leaving many people with no interest for the years between then and now. 2.8 Interest rate is given at RPI only. This is not a real representation of the interest that would have accrued in a bank account, or reflected in the rise of house prices over the period (many people who were wrongly assessed had to sell their houses to pay for their care) The rate of interest given generally in the County Courts is considerably higher. Those whose money is held by the Court of Protection would have received a higher rate of interest. 2.9 Both of these above points have caused considerable annoyance and anger to clients as they do not feel that they have been fairly reimbursed. However, having gone through such a long and laborious process, no one has felt able to challenge this further through the courts.

3. What Further Developments are Required to Support the Implementation of a National Framework 3.1 Easy to understand information should be available covering all the financial help with care costs that people can receive. This should include RNCC, NHS Continuing Care, ILF and Social and Healthcare contribution. There is very little comprehensive literature available about how all of these funding streams fit together, creating great confusion amongst the public. 3.2 Appropriate training should be given to all Social and Health Care professionals, care home staV, and health staV about 100% NHS Continuing Care, who could be eligible for it, how to refer for an assessment and who decides eligibility. Professionals providing inaccurate or partial information is misleading and confusing to members of the public at a very emotional and stressful time. 3.3 Guidance as to the use of terminology and language. Many people were told by Social and Health Care staV that their relatives had to go into a nursing home because they needed 24 hour care. They have then become very confused and angry when they have been told that their relative does not qualify for 100% NHS Continuing care, which appears to be a contradiction to what they were told by the Social and Health Care StaV. 3.4 Clear explanations by Social and Health care staV about the full range of options available to individuals for their care. This must include the option of being cared for at home and receiving 100% NHS Continuing Care funding. 3.5 National guidance to care homes about the quality and quantity of client care notes. These have been particularly inconsistent and have often lead to people being denied funding that they should be entitled to. 3.6 Thorough and nationally consistent assessor training on carrying out the assessment and on how to write the report to detail all the individuals care needs. There should also be guidance and a framework for writing a report for the decisions makers. We know of cases in Oxfordshire where the assessors report to the local decision making panel has been “This person should get 100% funding” without detailing the reasoning or evidence behind the opinion. As there was not adequate evidence provided to the decision makers, the funding was initially turned down. 3.7 Full training for care staV to enable them to accurately respond to questions from assessors. At a continuing care assessment at which we were present, the relative of the elderly person told the assessor that her mother couldn’t move or turn on her own. The assessor asked a nurse who was nearby who said that the patient could move on her own. At the insistence of the relative a second nurse was asked who agreed with the relative that even though the patient could wiggle her toes she couldn’t move on her own, or even help the nurses to turn her. 3.8 Provision of independent advice and support to individuals to ensure that they have a full understanding of the Continuing Care assessment process and eligibility criteria, and have fully supported opportunity to put their own/their relatives case to the decision makers. 3.9 Currently the award for eligibility for 100% NHS Continuing Care is made by a local panel that is made up of the Head of Continuing Care, a senior social and health care manager and a senior nurse from the Mental Health Trust. If the award is denied there is no right of appeal or independent review of the quality of the decision. You can only appeal to an independent panel if you believe the process has been improperly followed or the criteria improperly applied. A truly independent appeal panel would ensure transparency, greatly improve public confidence in the decisions being made, provide an independent check of the quality of decisions made and could ensure consistency of decisions across health authorities. 3.10 Systematic procedures need to be put into place to ensure that care home staV are able to identify clients whose health condition is deteriorating, so that they know when, how and where to refer to in order to instigate a 100% NHS funding assessment. Similar processes are also needed for Social and Health Care staV to be able to identify a clients’ potential eligibility for 100% NHS funding at their annual review. 3038591007 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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Memorandum by the Alzheimer’s Society (CC 26)

1. Summary 1.1 The Alzheimer’s Society welcomes the announcement of a national approach to NHS continuing care. As the disease progresses, people with dementia will develop a complex range of both physical and psychological symptoms. Appropriate and equitable access to good quality, NHS funded care is hugely important for this group. 1.2 The Alzheimer’s Society has consistently called for national eligibility criteria for NHS continuing care, which should be backed up by training and support for those carrying out assessments and applying the criteria. The national approach is a step forward, but must be seen in the context of a decrease in the specifically commissioned continuing care services across England. 1.3 The review by Strategic Health Authorities of their criteria and attempts to identify those who may have been incorrectly assessed was welcomed by the Society, but we believe many people with dementia continue to be excluded from NHS continuing care. The reasons why people with dementia are often unfairly excluded from receiving NHS continuing care include: — Assessments emphasise physical care. — People making assessments for continuing care are not qualified to recognise mental health needs. — People in the late stages of dementia are classed as stable and predictable. —ItisdiYcult to assess the terminal stage of dementia. — Dementia care is regarded as “social care”. 1.4 The Alzheimer’s Society has supported hundreds of people who have asked for reviews of continuing care cases. The Society has serious misgivings about the process of reviewing cases which has been underway. These include: — Access to information about the availability of continuing care and how to get an assessment is being restricted. — The Society questions whether following the initial stage of the review process, there are ongoing attempts to identify people who may be eligible for NHS continuing care, particularly among those living in care homes and without relatives. — Reviews are taking a long time. — Review panels are often not qualified to make clinical decisions and have limited access to records. — Independent review panels are often not independent. We have been told of a number of instances where primary care trust financial directors sit on continuing care panels, which is not acceptable. — Carers are being told they cannot attend independent review panels. 1.5 While we welcome the announcement of a national framework with clearer national guidance, we believe that the national guidance needs to be accompanied by a programme of work to further encourage equitable access. Without this, the government’s policy on who is entitled to continuing NHS health care will remain discriminatory and inconsistent. 1.6 The work needs to include training for those performing assessments for continuing care to ensure better assessments and decision making. 1.7 Criteria need to be clear and unambiguous so it is easier for carers to understand whether their loved one is eligible. 1.8 There are frequent breakdowns in care arrangements when the responsibility transfers between social service and the NHS. There need to be better systems in place locally to ensure that this does not happen.

2. Introduction 2.1 The Alzheimer’s Society is the UK’s leading care and research charity for people with dementia, their families and carers. The Alzheimer’s Society has over 25,000 members and works through a network of over 250 branches and support groups. It provides information and support for people with any form of dementia and their carers through its publications, helplines, website and local network. It advises professionals, runs quality care services and campaigns for improved health and social care and greater public understanding of dementia. The Society funds an innovative programme of biomedical and social research in the areas of cause, cure and care. 2.2 The Society welcomes the Health Select Committee’s inquiry. Since the report of the Health Service Ombudsman in February 2003 the Alzheimer’s Society has dealt with thousands of enquiries about eligibility for continuing NHS health care. The experience of people applying for continuing care has strengthened our view that the current system for determining who is entitled to fully funded NHS care discriminates against people with mental health conditions. 3038591007 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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2.3 Access to good quality, NHS funded care is hugely important for people with dementia. In the later stages of dementia, people will lose the ability to walk, to feed themselves, to communicate verbally, and often become doubly incontinent. People with dementia may also experience behavioural and psychological symptoms, for example hallucinations, extreme anxiety and sometimes aggression, particularly when they do not understand what is going on around them. This vulnerable group require a good package specialist skilled care, which meets these complex needs. 2.4 Because of the way dementia care is funded many people are paying large amounts of money for their care. As the disease progresses most people with dementia will eventually have to move to a care home, which can cost as much as £90,000 a year. Up to 75% of care home residents have some form of dementia. Furthermore, because of the lack of care homes able to provide specialist dementia care, people are paying for care that does not meet the individual’s needs. Not all people with dementia will eventually require NHS continuing care, but for those whose health needs meet the eligibility criteria, it is hugely important that access to a fully funded, quality package of care that meets their needs is straightforward and consistent around the country. 2.5 In this briefing we seek to document the problems that people with dementia and their carers continue to face in accessing NHS continuing care. We have dealt with each of the four areas identified in the terms of reference of the inquiry. — Firstly we give our response to the Ministerial statement and look at the context in which access to continuing care should be viewed. — We then go on to look at what changes are required beyond the national approach to assessment, in particular how to address the problems people with dementia have in accessing NHS continuing care. — The problems which people going through the review process have faced are then discussed. — Finally we look at what further developments are required to create an equitable, consistent approach to continuing care.

3. The Written Ministerial Statement on NHS Continuing Care Issued by Dr Stephen Ladyman on 9December 2004 3.1 The Alzheimer’s Society has consistently called for national eligibility criteria for NHS continuing care and believes the development of a national approach to assessment for fully funded NHS care is a positive step forward. We agree that national guidance would improve equity in access to NHS continuing care, but believe that more fundamental problems exist. For example, the pressure to keep continuing care budgets down and the limited availability of suitable continuing care places for older people create a system with inbuilt incentives not to assess someone as “continuing care”. The review of SHA criteria, triggered by the Ombudsman’s report, has also failed to look at assessment tools for continuing care and the Alzheimer’s Society believes that as a result they may not be Coughlan compliant or legal.

3.2 Putting NHS continuing care in context 3.2.1 Recent problems in accessing NHS continuing care need be understood in the context of an ongoing reduction in specifically commissioned continuing care services across England. In particular there has been a trend over the past 15 years for NHS trusts to close continuing care wards. Clinicians have told us that decisions by NHS trusts to close continuing care wards have been driven by cost rather than need. The result of this trend is that in some areas of the country there is no continuing care provision at all, while in others provision is seriously depleted. 3.2.2 The reduction in NHS continuing care provided in acute wards means that in many places the responsibility for caring for people with serious continuing care needs has moved to independent sector care homes, which are often not skilled or equipped to care for them. 3.2.3 While this trend has been developing, the number of care home places for people with serious mental health problems has been falling. This is despite evidence that people with dementia in the later stages are living longer than they have before which would tend to support the requirement for increased provision of continuing care places.

4. How the Changes will Build on the Work already Undertaken by Strategic Health Authorities in Reviewing Criteria for NHS Continuing Care and Developing Policies 4.1 The Health Service Ombudsman identified a number of health authorities who had wrongly applied the NHS continuing care criteria in her February 2003 report. In particular, she argued that health authorities were applying the criteria too strictly and as a result were probably excluding people who should be eligible for continuing care. The Alzheimer’s Society believes that despite the review of criteria which has taken place, many people with dementia continue to be excluded from continuing care. We have argued that 3038591007 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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national criteria are necessary to make access more equitable and the development of a national approach to assessment is welcomed, but we feel specific work will be necessary to ensure that criteria and methods of assessment do not exclude people with dementia.

4.2 People with dementia have particular diYculty in accessing NHS continuing care NHS continuing care is provided irrespective of a person’s condition and is based solely on their needs. People with dementia are as entitled to fully funded NHS continuing care as those with other conditions if they meet local eligibility criteria. Department of Health, 2004 4.2.1 Despite the Department of Health’s commitment that eligibility is not based on diagnosis, we have found that people with a diagnosis of dementia have frequently been excluded from continuing care funding. The panel could find no evidence to indicate that X has any complex, intense or unpredictable health care needs and her health care is being managed by staV at the nursing home without additional support from health profs (I appealed—wife is now getting care home fees in full and a refund of £66,000)” Carer 4.2.2 There are a number of reasons why people with dementia are often unfairly excluded from receiving NHS continuing care. These include: — Assessments emphasise physical care. — People making assessments for continuing care are not qualified to recognise mental health needs. — People in the late stages of dementia are classed as stable and predictable. —ItisdiYcult to assess the terminal stage of dementia. — Dementia care is regarded as “social care”.

4.3 Assessments emphasise physical care 4.3.1 Assessments for continuing care tend to emphasise physical care and ignore psychological needs. In spite of recent guidance which makes clear that mental health needs should be taken into account, we continue to hear from carers about the lack of awareness of mental health problems. “The whole assessment process placed little focus on the psychological health and needs of my wife.” Carer “I asked the district nurse if my mother might be eligible or continuing care and she said: ‘No she won’t. Unless she has tubes sticking out what every orifice or is dying in a hospice she won’t meet the criteria.’” Carer 4.3.2 The Health Service Ombudsman’s report into the Pointon case in 2004 highlighted the fact that in that case not enough emphasis had been put upon the psychological and mental health means of Malcolm Pointon, who has Alzheimer’s disease. In our experience, assessments for continuing NHS care typically do not take into account people’s mental health and/or psychological needs. Instead, they focus on the physical aspects of care and whether care comes from specific health care professionals. 4.3.3 There has been little recognition of the mental health care that people with dementia need. Helping someone to cope with the psychological and emotional impact of dementia is a skilled part of health care but has not been recognised as such in assessments for continuing NHS health care. 4.3.4 Health professionals often argue that once a person with dementia has become too ill to display behaviour that is diYcult to manage, they no longer have any psychological needs. This was not accepted in the case in the Pointon investigation. When assessing someone’s eligibility for continuing care psychological factors need to be included in the assessment. For instance, does the person with dementia have panic attacks or fits? How do these aVect his/her needs? Does the person forget to eat unless they are carefully persuaded? Is s/he easily frightened and do everyday care tasks have to be carried out in particular ways to take account of psychological factors?

4.4 People making assessments for continuing care are not qualified to recognise mental health needs “The nurse doing the assessment did not seem to consider psychological aspects of my husband’s care. Her form seemed very limited.” Carer 4.4.1 Evidence from continuing care assessments and discussions we have had with nurses show that the health care professionals assessing people for continuing care are often not trained in dementia care and in particular feel inadequately equipped to assess mental health needs. Many of the written assessments for continuing care which we have seen make no mention of the psychological aspects of care which someone 3038591008 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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with dementia needs to have considered as part of their care package. We support the view of the Royal College of Nursing that some nurses need more training and support to be able to adequately assess the continuing care needs of people with serious medical conditions.

4.5 People in the late stages of dementia are classed as stable and predictable “My mother is in the late stages of Alzheimer’s disease. She cannot communicate, is doubly incontinent, diabetic, and is gradually getting worse and worse. However, we have been told that her condition is stable and predictable and therefore she does not meet the continuing care criteria.” Carer “I am on an independent review panel for continuing care and I have been trying to convince the chair of the panel that we should contact the Department of Health to talk about the fact that the criteria themselves discriminate against people with dementia. But the rest of the panel think it is not our business to rock the boat.” Review panel member People who may be eligible for fully funded NHS continuing care are likely to have complex needs, and these needs will change over time. When an individual’s condition deteriorates their needs can change significantly and they are likely to need a greater degree of intervention, as can be seen with some of the behavioural problems which can be associated with the early stages of dementia. However, it is also the case that people with other conditions may find their health care needs change so they require less medical care and intervention. Department of Health, October 2004 “My wife is at the end stage of Alzheimer’s. She has been reassessed with a subsequent loss of fully funded care. . . she remains totally immobile, is doubly incontinent, unable to communicate intelligibly and is bed ridden. A hoist is required and any movement causes great pain and discomfort. My wife suVers both mental and physical stress during any process that requires her to be moved such as frequent turning in any 24 hour period, washing and changing of continence pads.” Carer

4.5.1 The criteria for continuing NHS health care place a strong emphasis on how stable a person’s condition is. An individual may qualify for NHS continuing care if they have a “rapidly deteriorating or unstable medical, physical or mental health condition and requires supervision by a member (or members) of the multi-disciplinary team, such as the doctor, nurse, therapist or other NHS member of the team.” Carers are frequently told that a relative with dementia does not meet NHS continuing care criteria because their condition is stable.

4.5.2 The definition of stable is frequently based upon the amount of nursing care input that is required. People with advanced dementia are told that their needs are predictable and, therefore, can be managed without health care input beyond the occasional visit from the district nurse. The Alzheimer’s Society does not regard this as an adequate level of care.

4.5.3 Alzheimer’s disease and most other forms of dementia are progressive, degenerative conditions. The health of a person with dementia will decline, and ultimately require 24 hour care. However, contrary to expectation, as an individual with dementia worsens, they become less likely to qualify for NHS continuing care. This does not appear to make any sense. In fact, it reflects the lack of understanding of the specialist care that is required to support people in late stages of dementia. People who have severe communication problems, are incontinent, and cannot move unaided or eat by themselves may appear to be “easier” to care for. But this is clearly a fallacy and really reflects the poor quality of care delivered to most.

4.5.4 The definitions of stability and predictability also create perverse incentives to provide inappropriate care. For example, the Alzheimer’s Society is aware that people with dementia are regularly over-sedated with anti-psychotic medication, to handle symptoms such as aggressive behaviour. People with aggressive behaviour often meet the criteria for fully funded NHS care because they need a high level of supervision. However, by sedating someone with dementia, the level of health care intervention required falls, and someone no longer meets the criteria.

4.5.5 With good quality dementia care, from trained staV, a person will become less agitated and distressed. When the person appears to be more settled, they lose their NHS continuing care funding. There is little incentive to provide good care. In fact, the worst case scenario, at a time when risk of financial abuse is high for people with dementia and care home costs so high, an abusive relative may see an incentive to place a relative with dementia in poor care setting, and therefore maintain qualification for NHS funding. 3038591008 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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4.6 It is diYcult to assess the terminal stage of dementia 4.6.1 A person who is “in the final stages of a terminal illness and is likely to die in the near future” is usually eligible for NHS continuing care. However, there is no clear definition of the palliative stage of dementia. Shuster (2000) estimates that the end of life stage can last two-three years.1 This means that it is diYcult to ascertain when the person with dementia is in the palliative stage. However, eligibility for continuing care should be based on need rather than time until end of life.

4.7 Dementia care is regarded as “social care” “The panel recognised that your mother does need an intense level of care but considered that majority of the care needs are for personal care, not for health care.” Letter from a review panel 4.7.1 Historically, much of the care received by people with dementia has been classed as social care. We believe that this is largely a legacy of dementia being inaccurately understood to be “just old age”. 4.7.2 If someone with dementia needs help with washing, eating, dressing and using the toilet, this help is typically provided by a care assistant from social services. People are means tested for the care they receive from social services. The Alzheimer’s Society argues that this care is an essential part of the health care package that someone with dementia receives, and that no one should be charged for it—it is a direct result of a physical disease of the brain. If this care was provided by district nurses or other health care workers it would not be charged for. 4.7.3 The government’s charging policy continues to be based on who provides the care (NHS or social services) and not on what an individual’s care needs are. In particular, this practice discriminates against people with dementia who live at home or in a residential care home. 4.7.4 People with dementia are failing assessments for continuing care because their care needs are classed as “social care”. However, inadequate attention is being paid in assessments, and the care that is delivered, to the psychological aspects of care. In relation to mobility, transferring a person with dementia using a hoist is a more complex and diYcult operation than transferring a frail older person who understands what is happening to them. Moving a person with dementia requires skilled care beyond the basic manual handling training that you would expect from any professional care assistant.

5. Whether the Review of Past Funding Decisions has Succeeded in Addressing the Needs of Patients Wrongly Denied NHS Funding for their Longterm Care 5.1 The Alzheimer’s Society has been supporting hundreds of people who have asked for reviews of continuing care cases. Our helpline has received thousands of enquiries about continuing care since the report of the Health Service Ombudsman in February 2003. In response to both the level of interest and our concern that the process for reviews is not transparent or easy to navigate the Society has also produced a booklet entitled “When does the NHS pay for care?” Beyond the concerns previously expressed in this memorandum, the Society also has serious misgivings about the process of reviewing cases which has been underway.

5.2 Access to information about the availability of continuing care and how to get an assessment is being restricted “When I asked the PCT for a copy of the criteria, the person said, ‘But why do you want them?’ I was told I had to put a request for a copy of the criteria in writing.” Carer “I rang up the local NHS trust and asked if I could have a copy of the continuing care criteria. They said they were only available to the public on the internet.” Carer “They discouraged me from applying because my father cannot make an informed decision and I was told it had to be done by him. Although I am a qualified nurse I have been unable to fathom the social services local department. I feel they are guilty of depriving him appropriate care.” Carer 5.2.1 There have been improvements in the past year in access to information about the availability of continuing care. It is also true that because of the Directions on continuing care issued by the Department of Health in 2004, more people leaving hospital are being assessed for fully funded continuing care. However, the Alzheimer’s Society continues to receive regular reports of people being denied adequate access to information and support. For example, it is not acceptable for criteria to only be available electronically.

1 Shuster JL, 2000, Palliative care for advanced dementia. Clinical Geriatric Medicine. 16: 373-86. 3038591009 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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5.2.2 Another serious deficiency in the system of review is confusion about who has the right to access care records. Many carers are being told that they do not have any rights to see the medical records of the person who they are caring for. Even if access is allowed, many people are being forced to go through cumbersome bureaucratic procedures to access information. 5.2.3 Carers must have access to medical records in order to make good use of the review process. Beyond that, good practice in dementia care requires the involvement of those close to the person with dementia. We are concerned that this is not happening. Our legal advice is that the law requires the public and private interests in maintaining confidentiality to be weighed against the public and private interests in disclosure. Clearer guidance to the NHS and local authorities is required.

5.3 Are people who may be eligible for NHS continuing care being identified?

5.3.1 The Alzheimer’s Society questions whether, following the initial stage of the review process, there are ongoing attempts to identify people who may be eligible for NHS continuing care. In our experience there is discrepancy around the country in how people are put forward for assessment for continuing care, particularly when people are cared for at home or in a care home. In many areas it may be reliant on whether the person has relatives able to advocate on their behalf, as not all staV will be aware that a person may be eligible for continuing care.

5.4 Reviews are taking a long time “In my wife’s case the process has taken a very long time. She has had two assessments, the last one on August 04 and I have only just heard that we have been turned down for any more funding.” (January 2005) “The history of my review is as follows: February 2003—appeal request to Chief Executive of PCT October 2003—panel meeting December 2003—notified of panels decision December 2003—appealed to convenor May 2004 —convenor asks panel to explain decision September 2004—two meetings with PCT panel” Carer “Very slow process. No acknowledgement of letters etc received (one didn’t arrive) each stage seemed to be drawn out.” Carer 5.4.1 The Minister stated on 9 December that good progress has been made in clearing the backlog of continuing care reviews. While the Alzheimer’s Society agrees that some progress has been made, numerous people continue to wait far too long for reviews. It is unacceptable that vulnerable people are being forced to go through such a time consuming and bureaucratic process.

5.5 Review panels are often not qualified to make clinical decisions

5.5.1 The experience of our members at continuing care review panels gives rise to concerns about various aspects of the way that panels function. In particular we are concerned that review panels often do not have the clinical expertise required to make decisions about who qualifies for fully funded continuing care. The panels often do not include appropriate specialist clinicians. 5.5.2 Furthermore, the records available to panels seem limited. Some carers are attending panels and finding that they have more extensive documentation than the panels themselves. “After extensive enquiries to locate both X and Y care homes for M’s medical records, it appears both no longer exist. It is also apparent, social services have no records available, and the only information we have on file is the GP’s medical records.” Letter from review panel “When I was at the panel I explained why I thought my mother had complex care needs by referring to the nursing care assessment made at the care home. The panel didn’t even have a copy of the assessment.” Carer 3038591009 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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5.6 Independent review panels are not independent “I am left with the impression that far from being impractical the review process is revenue driven.” Carer “Another major flaw in the system is that the panel are all employees of the NHS. They all have a vested interest in bringing in a verdict that suits the PCT. Our local Trust is £9 million in the red and there is no way the panel is going to make things worse by causing it more expense. The career prospects and promotion etc depend on them toeing the line.” Carer 5.6.1 The Alzheimer’s Society has major concerns about the independence of the people making up independent review panels. Anyone from the local NHS as a vested interest in ensuring that the trust does not have to make a refund of continuing care costs, or to assess more people as meeting the criteria. We have also been told of a number of instances where primary care trust financial directors sit on continuing care panels. We do not find this acceptable. There should be no question of people with financial responsibility at PCT level being involved in decision-making about clinical questions. The Department of Health has made clear that PCTs will be given suYcient funds to make refunds for cases where continuing care has wrongly been denied.

5.7 Carers are being told they cannot attend independent review panels “I got a letter yesterday informing me that a panel had sat 2 months ago and found that my mother didn’t meet the criteria. I would have liked to and have been there to give my views.” Carer “I asked if I could go to the panel and they said ‘no’.” Carer 5.7.1 The Alzheimer’s Society believes that carers should be as involved as possible in care planning for people with dementia, when the person is no longer able to make decisions by him or herself. Carers are usually very knowledgeable about the medical condition of the person who they care for and should be an integral part of care assessments and continuing care reviews. To deny carers access to continuing care review panels is unacceptable. It leads to suspicion that unjust decisions are being made without adequate information. 5.7.2 Guidance often also states that carers can bring someone with them for support but not to contribute to discussion. Skilled advocates should be available to enable carers to make eVective contributions to decision-making. In addition, advocates should be available for those people with dementia who have no one to represent them. The Society is concerned that those people with dementia who have no enduring power of attorney and no family and friends to represent them have been largely ignored in the recent claims for compensation.

6. What Further Developments are Required to Support the Implementation of a National Framework? 6.1 While we welcome the announcement of a national framework with clearer national guidance, we believe that the national guidance needs to be accompanied by a programme of work to further encourage equitable access. Without this, the government’s policy on who is entitled to continuing NHS health care will remain discriminatory and inconsistent.

6.2 Training staV to identify and accurately assess individuals who may be eligible 6.2.1 An important part of the programme of work is provision of training for those performing assessments for continuing care. As the Ombudsman noted in her report of 2004, assessment methods and the quality of decision making has been variable. Given the complexity of many of the local criteria it is not surprising that bad decisions have been made. Support and ongoing training and review should be available to develop better assessment and decision making and ensure that people eligible for NHS continuing care are in receipt of it. 6.2.2 One of the issues with which the care system is having particular trouble grappling, is how to identify when people become eligible for continuing care. In some care homes there is a good system for identifying continuing care cases as part of the assessment process for NHS funded nursing care. However, as care assistants deliver the majority of the care for people with dementia it would be sensible for them to be trained to be able to identify continuing care cases. Currently, the Alzheimer’s Society estimates that only 10% of care staV in care homes are trained in dementia care. If we are to increase the quality of care available to people with dementia who make up 75% of people in care homes, the training needs of care assistants and nurses in mental health care need to be addressed as a matter of urgency. 3038591010 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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6.3 The criteria need to be clear, unambiguous and easy to understand “Many lawyers are struggling to understand how the continuing care criteria work and apply in individual cases. How the lay person can be expected to understand the criteria is beyond me.” Carer 6.3.1 One of the strongest criticisms that the Alzheimer’s Society would make of the continuing care criteria is that they are diYcult for lay people to understand. When people are deciding whether they should apply for continuing care or ask for a review of their case, it is very diYcult for them to establish by looking at the criteria whether they do have a case. For many people caring for someone with late stage dementia it seems obvious that the person has a serious, deteriorating medical condition. However, they are then told that their case does not meet the criteria. Any national review will have to develop criteria which are simple for the NHS, local authorities and the public to understand.

6.4 There is confusion about the relationship between NHS nursing care and NHS continuing care “My mother-in-law is classed as high band nursing care, and regularly receives care from nurses. But she is not classed as continuing care.” Carer 6.4.1 The government introduced NHS funded nursing care in nursing homes in response to the Royal Commission on Long Term Care. In order to meet the criteria for higher band nursing care funding, someone must receive regular care from a state registered nurse over a 24-hour period. In many cases where people meet the criteria for nursing care, we find it very diYcult to understand why they do not meet the criteria for fully funded continuing care. Carers, nurses and care home owners tell us that they are equally confused. The relationship between NHS nursing care payments and fully funded continuing care will need to form part of the government’s review of continuing care.

6.5 Inadequate arrangements in place for the NHS to deliver continuing care, combined with a poor relationship with social care services “The nursing staV and assessment people were very kind and helpful. The whole process took about a year. The problem was when we got NHS funding, social services withdrew and left us without any care. The NHS say they are unable to find carers to take care of my husband, so now I have less care and have to manage with friends and neighbours or allow him to go into hospital or nursing home.” Carer 6.5.1 The Alzheimer’s Society is in contact with a number of people who have experienced serious diYculties in agreeing an adequate continuing care package for a person with dementia once it has been agreed that they meet the criteria. In particular, there seems to be a serious breakdown in care arrangements when the responsibility for providing care moves from social services to the NHS or vice versa. Better arrangements need to be in place to ensure continuity of care. If care workers are already in place supporting someone, it can be very confusing for someone with dementia to have a complete change in care arrangements. Social services and the NHS should be able to work together better to ensure continuity of care. 6.5.2 The quality of care provided to people with dementia in care homes is often inadequate. People with dementia on continuing care wards will receive regular supervision from a multidisciplinary team. They will be under constant consultant review, and a ratio of one nurse to every six people is not uncommon. This level of support rarely exists for people with dementia who meet the continuing care criteria that are cared for in care homes. The Alzheimer’s Society does not argue that continuing care wards are the correct or single model which should be used for continuing care, but many do present an eVective model of care.

7. Recommendations 7.1 In addition to the areas of work we have suggested as necessary to support the implementation of the national guidance we have developed a number of recommendations. In particular, the Department of Health has indicated that some of the work streams that form the review which they will be conducting into continuing care are likely to take up to 12 months. We would recommend some short-term changes which we feel would help to resolve some of the problems which we have identified in this memorandum, as well as some areas which need to be resolved as part of the review. 7.2 The Department of Health must develop clear, lay friendly, national NHS continuing care criteria, assessment tools, and guidance which pay specific attention to mental health care. Particular attention will need to be paid to the relationship between NHS continuing care and NHS funded nursing care. 7.3 PCTs and SHAs should perform a needs based audit of continuing care provision to understand whether current provision is adequate. 7.4 Health and social care professionals involved in assessments for NHS continuing care must be trained in how to identify mental health needs and deliver care packages which meet those needs. 3038591010 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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7.5 The Department of Health must urgently review the definition of “nursing” contained in the Health and Social Care Act 2001 to ensure that it does not discriminate against people with dementia. 7.6 Better systems of working must be developed between the NHS and social care to ensure continuity of care when someone is assessed as “continuing care” and when responsibility for funding care moves from one body to another. 7.7 In relation to continuing care reviews clear guidance must be given to PCTs and SHAs on: — enabling carers to access medical records, as appropriate; — involving carers in developing care plans, as appropriate; — allowing carers to attend independent review panels; — allowing carers access to an advocate who can support continuing care reviews; — ensuring that meetings of review panels are easily accessible to carers; — how to ensure that review panels have the clinical expertise required to make sensible decisions; and — the make up of review panels to ensure that they are “independent”. In particular PCT or SHA oYcials with budgetary responsibility must not be part of the review process. 7.8 The Health Select Committee must consider having a more detailed enquiry to investigate the division between health and social care, particularly with regard to the care of older people. This should focus on elements such as the government’s response to the Royal Commission on Long Term Care and how NHS funded nursing care is working in practice.

Memorandum by Citizens Advice (CC 15)

Introduction

The CAB Service welcomes the opportunity to submit evidence to the Health Committee’s review of continuing care. It is clear from our evidence that this issue continues to be highly problematic and a source of much confusion amongst patients, their carers and health professionals. Following the publicity resulting from the Health Service Ombudsman’s report in February 2003, many bureaux reported clients seeking clarification and further information about how the report might aVect their relative’s situation and what steps they should take. In addition, those bureaux which are involved in delivering the Independent Complaints Advocacy Service (ICAS) have undertaken extensive work in helping clients through the revision and restitution process which followed the Ombudsman’s report and the Department of Health’s response. Since September 2003, Citizens Advice Bureaux (CABx) in six regions across England have been involved in providing help, advice and advocacy to people who have had a problematic experience with the NHS, through the provision of the Independent Complaints Advocacy Service (ICAS). These ICAS bureaux have dealt with a total of 96 continuing care cases over this period, 33 of which have been opened since December 2004. There is therefore no sign yet that the advice and support needs of patients are declining. Many of the early cases involved clients who had been pursuing their case for some time and had already completed a number of the stages in the review process. The more recent cases more often involve people who are new to the continuing care system. Through our involvement in ICAS as well as evidence from the wider CAB network, it is apparent that the issue of NHS continuing health care funding continues to be problematic. Following the Health Ombudsman’s recommendation, many carers have approached ICAS bureaux requesting support during the review process of a patient’s continuing health care decision. Evidence from bureaux suggests that whilst the eligibility criteria for continuing health care funding remain unclear, there is also wide variation in the outcomes of the reviews. There is also wide variation in how NHS trusts are carrying out the review process of decisions made since 1996, ranging from proactively contacting patients and their carers who may be aVected, to primary care trusts being unaware that they should be carrying out reviews at all. It is imperative that NHS trusts have a consistent approach towards continuing health care assessments, for both current and reviewed assessments to be fair and transparent. Further, it is diYcult to see how a truly patient centred or personalised service can be implemented whilst the above confusion reigns. If NHS and social service departments are unclear about what the rules are and how they should be applied, given their access to NHS knowledge and information services, patients and their carers are often left in the dark about what the issues are regarding access to, and funding of care, and so cannot be empowered to make informed choices. Information for patients and carers in this area is at best minimal, and at worst, misleading or non existent. 3038591011 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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Inadequate Information

“We find it hard to understand what is health and what is social care within our own organisations, and yet we expect the public to understand it!” (quoted in Continuing Health Care: review, revision and restitution, Melanie Henwood, Dept of Health, 2004) It is very clear from CAB evidence that the information provided to patients and carers on the continuing care procedures is woefully inadequate. Given the complexity of the policy and the uncertainly of health care processionals in how to apply it, this is not surprising. However this is nonetheless totally unacceptable in such an important area of health care provision, where the outcome of the decision can make a huge financial diVerence to families involved. Many CABx clients are not only not informed of what options are available and of the funding arrangements for each, but they are more often than not, provided with no choices at all, and merely advised of what the NHS and/or social services departments have decided—often involving removal of the patient from his/her home, and being presented with the substantial costs to patients that this decision creates. A bureau in the South West report on the case of a 95-year-old woman who had terminal bowel cancer was partially sighted, nearly deaf, doubly incontinent and confused. She also could not move without assistance, and so was also dependent on others to feed and dress her. She was hospitalised following a fall and spent three months in hospital. At the end of this time, the family was informed by hospital staV and a social worker that the hospital could do no more for their mother, and that she should be discharged to a nursing home. The family was advised that their mother should be self-funding. The family was provided with no advice about how this decision had been made and what the options were for their mother. They felt that they had simply been given an ultimatum. The family placed their mother in a nursing home, but found the whole experience very traumatic as they were provided with no help or information in finding the home, and did not receive any advice from NHS or social services. A bureau in the North West is assisting a family whose father had become completely dependent following a number of severe strokes. He is completely immobile, unable to perform any tasks unaided, unable to communicate and totally reliant on 24 hour nursing care. The family were advised that their father would have to be placed in a nursing home, and were told that his home would need to be sold to fund his care. The family received no information about the assessment process, or even whether their father had received a continuing health care assessment. When investigating further, it was revealed that their father had never been provided with a continuing health care assessment. A joint assessment between the NHS and social services had been carried out, resulting in their father being assessed as being eligible for medium rate nursing care. The family was totally unaware of this, and had never been informed. The family has requested a continuing health care assessment and is awaiting a new decision. Given the vulnerability of patients and their carers at a time like this, it is essential that clear information and advice are available outlining the needs of the patient and the options available for the patient and their carers in getting those needs met. In order for this to happen, it is imperative that NHS and social service personnel, firstly, are clear about what the care needs of the patient are; secondly, are informed about what the options are to meet the care needs, and thirdly, and equally as importantly, recognize the importance of, and are trained in conveying this information to patients and their families/carers. Information is also essential if people are to be able to properly engage with the review process. Again the evidence is that this has not been the case. Many panels do not appear to have a procedure to inform patients that their case is being reassessed, let alone to ensure that they have the opportunity to attend the hearing, and present their case, supported by an advocate where necessary: A client in the North West found out that his father’s case was due to be reassessed at a sifting panel and asked if he could attend. He was told that he could not; he contacted ICAS who questioned why the client could not attend. The PCT agreed that the client could attend with the ICAS caseworker but as the panel had 32 cases to reassess that day they could not have long to put their case across. CAB would question whether it is possible to conduct a proper assessment of so many cases in one day. In the midst of all this confusion, there are strategic health authorities doing their best to make sure that the services they provide are patient centred, and aim to be open and transparent in their decision making: A CAB in the London region has been working with a strategic health authority on a continuing health care review case. The strategic health authority has developed detailed guidance in conjunction with primary care trusts and social service departments in their area on NHS and local authority responsibilities for meeting continuing health care needs. The document provides information on both current assessments and issues that may arise from the retrospective reviews. It provides pen pictures for NHS continuing health care and joint NHS and social care assessments. The document has been produced for NHS and social service personnel working in 3038591011 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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continuing health care. However, it is also available to the public on request. The strategic health authority has provided this document to ICAS in an attempt to ensure that people wishing to challenge assessment decisions have clear information on which to base their challenge. Unfortunately, CABx have found that this type of approach by strategic health authorities is the exception rather than the rule.

Poor Decision Making Many CABx report fundamental problems with the adequacy or indeed existence of the initial decision making regarding eligibility for continuing care. The Government issued new directions in February 2004 outlining criteria for consideration of eligibility for continuing care upon discharge from hospital. This procedure should be followed prior to the RNCC assessment which assesses the level of nursing care which will be funded directly to a nursing home. However many ICAS clients have still not received a written copy of the assessment made. Others have been told that they do not qualify for continuing care as they have not met the criteria for the highest level of nursing care. These are two separate assessments and the criteria for continuing care are not dependent on meeting the criteria for the highest band of nursing care. CABx in the North West reported that a primary care trust was not carrying out a specific assessment, but was relying on the joint NHS and social service assessment. They stated that if a patient was assessed as requiring the highest-level band of nursing care, then NHS continuing health care funding would be considered. CABx report that many of their clients suVer from degenerative diseases, which require intensive nursing care, but are not being considered for continuing health care assessment, as they have previously had a joint assessment that has located them in the middle-level band of nursing care. A further issue relates to where the patient is living. The guidance for NHS continuing health care assessments makes it clear that assessments should focus on the health needs of patients, irrespective of where the care is carried out. However CAB evidence indicates that this guidance is not being applied, and that where patients are resident has been used as a criterion as to their eligibility for NHS continuing health care funding. A CAB in the South West reported that a primary care trust had adopted a blanket policy whereby if nurses employed by a nursing home are caring for a patient, the patient is not eligible for continuing health care funding. This is irrespective of the patient’s healthcare needs, and the nursing home employing specialist nurses to provide complex health care. Further, the CAB reported that there is inconsistency in the application of the criteria as one nursing home might call in specialist help, whereas another might already employ specialist nurses to manage the same conditions; therefore people with the same health needs are treated diVerently under the criteria. A CAB in London reported a client whose aunt had suVered from Alzheimer’s. The PCT took no action fro three months, after which they referred the case to the Strategic Health Authority (SHA). The latter decided, on the basis of medical records which were two years out of date, that she did not meet the criteria for continuing care because she went into a nursing home from home rather than from hospital. The case was referred to the Ombudsman. The diagnosis of the health condition appears to have a bearing on whether a patient is considered for NHS continuing health care funding. Although a patient’s physical and mental healthcare needs should be considered at the point of assessment, CABx report that all too often psychiatric and psychological needs are ignored. In some cases a shortage of community psychiatric nurses may mean that none are involved in the continuing care assessment. This is particularly pertinent for patients suVering from dementia and other mentally debilitating conditions. A CAB in the North West is supporting a client whose mother suVers from dementia. She was admitted to hospital following a fall and a continuing health care assessment was carried out. However, the assessment only focused on her physical condition and healthcare needs, and ignored her psychiatric healthcare needs.

Adequacy of the Review Procedure Many of these problems have been compounded for patients because of the complexity and inadequacies of the review process. Firstly, as mentioned above, the review process is often far from patient -centred or transparent, and therefore patients may have diYculty in accepting that an adverse decision is reasonable. A CAB adviser in the south west who accompanied a client to a review, commented that it felt as if the balance was firmly tipped against the client. There was no guidance to help people interpret the criteria so that they knew what were the key points of their case which they should emphasise. In addition the local review oYcer had prepared a written report which was copied to the eight panel members but not to the patient until the adviser requested it. 3038591011 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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Secondly, the quality of evidence available can be very inadequate, particularly where a case goes back several years. There are no requirements on nursing home providers to keep records which would enable a retrospective assessment of eligibility for continuing care to be carried out. A CAB in the North West reported a client who has been trying to obtain continuing care restitution for her aunt for the past three years. She came to ICAS when she came to an impasse with the PCT who had said that, as the nursing home records had disappeared they did not have suYcient records to review the case. The ICAS case worker is trying to establish what records are available such as hospital and GP records but the PCT seems “disinterested”. It seems likely that this case will go to the Ombudsman. Thirdly, the full review process can be very protracted, which prolongs the anxiety and distress for patients and their relatives. The process can involve panels at both PCT and SHA. In some cases the SHA may refer the case back to be heard by another PCT panel if they feel the first one was inadequate. Fourthly, at its worst, it appears that people can find their cases batted between the PCT and the SHA where the two bodies disagree: A CAB in Lancashire reported a client who was told by the PCT that as they did not have the arrangements established for the first review, she should go directly to the SHA. The ICAS caseworker applied to the SHA accordingly and was trying to arrange the details of the review. After a few weeks the SHA decided that they could not review the decision until the PCT had held a review. The PCT cannot give a date when they will have their procedures ready. Another client in diVerent areas of Lancashire went through all the reviews at the PCT and SHA level where the panel found in his favour. The PCT objected and under the regulations was able to request another SHA panel review. The SHA were very shocked that the PCT would not honour their decision but admitted to the ICAS caseworker that they could not enforce the decision. The case has been referred to the Health Service Ombudsman, who may find in the client’s favour but also cannot force the PCT to make the payment.

Second Stage Complaints Where a person makes a complaint there are generally two stages to the complaints procedure before the client has recourse to the Health Ombudsman. If local resolution including access to ICAS fails to satisfy the complainant the matter may be referred to the Healthcare Commission. However, the Commission has taken the decision to fast-track complaints it receives on continuing care direct to the Ombudsman. This means that people will miss out on the second stage of the independent complaints process. We would question whether this position is right in terms of natural justice.

Conclusions and Recommendations CAB evidence indicates that decision making around eligibility for continuing care continues to be one of the least satisfactory areas of NHS practice. In our view this stems in part from the complexity of the policy itself, which has proved diYcult to understand and to administer. This has resulted in poor decision- making by health professionals and lack of information for patients, leaving many confused and frustrated. Yet these decisions, which can be very marginal, have huge financial implications for patients and their families, often running into hundreds of thousands of pounds. This is highly unsatisfactory and runs totally contrary to the principles of the patient-centred health service which the Government is striving to create. Indeed it is diYcult to find any supporters for the current policy. Certainly it is clear from Henwood’s research (op cit) that many health professionals are uncomfortable with current provisions and resent the amount of time spent on assessments rather than on the direct delivery of health care. In our view there is an urgent need for a fundamental review of the legal framework surrounding the definition of and entitlement to continuing care, in the context of a comprehensive, inclusive and public consultation. The courts have usefully explored the principles of existing legislation and providers’ obligations, but greater transparency and clear codification is required to achieve a fair threshold between NHS and social service functions in a way that treats the whole person’s needs. If the current distinction between the charging for personal and health care (which is arguably a false distinction and the root of the problem) is to remain, then at a minimum, the aim must be to achieve consensus over the meaning of continuing care which is transparent, fair and equitable, and easy to administer. With regard to the terms of reference of this inquiry, CAB evidence indicates that the review process has had mixed success in addressing the needs of patients wrongly denied continuing care funding. Whilst many have benefited financially, the process has proved distressing and alienating for many patients. In addition, the quality of decision making has often been poor, and the lack of information and transparency in the process has meant that patients have found negative decisions diYcult to accept. 3038591011 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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We consider it essential that the “development of a national consistent approach to assessment” announced by the Minister on 9 December 2005 includes the development of a single set of national eligibility criteria, to be applied by all trusts. These must be transparent and understandable to health professionals, patients and carers. In addition these must be underpinned by measures to improve the procedures by which they are applied, which should include: — A nationally produced information strategy for patients and carers including leaflets and guidance on how continuing care decisions are made, and how these can be reviewed. — Comprehensive training for all professionals who may be involved in the continuing care assessment process, including GPs, social services and care home staV. — Clear requirements on record keeping for all health professionals including GPs, care home staV and social services staV. This should include a requirement for periodic reviews of patients’ eligibility for continuing care, in order to ensure that patients whose conditions vary over time are properly assessed. — Measures to improve the timeliness of decision making where the review process is invoked. — Where a trust’s decision has been referred to an SHA, the SHA’s decision should be binding on the trust.

Witnesses: Ms Pauline Thompson, Policy OYcer, Community Care Finance, Age Concern, Ms Julia Cream, Head of Public AVairs, and Ms Barbara Pointon, Alzheimer’s Society, Mr John Wheatley, Senior Social Policy OYcer (Social Exclusion, Work and Welfare) and Ms Anne Williams, Independent Complaints Advocacy Service, Regional Co-ordinator for the North West, Citizens’ Advice, examined.

Q90 Chairman: Welcome to our witnesses. We are Q92 Chairman: What can be done about that? very grateful for your participation. I am sorry we Ms Cream: Better joint working. are slightly delayed on bringing you on, but I am Ms Pointon: Extend direct payments to NHS sure you will agree, because you have all been continuing care. present, that it was a very useful session. Can you briefly introduce yourselves to the Committee? Q93 Chairman: Say a bit more about that, Ms Ms Pointon: I am Barbara Pointon. I am a carer of Pointed; and if you want to talk about your someone who is in the very last stages of dementia. experiences in relation to your own circumstances— We have been on the sharp end of the continuing which is why you are here—how might that possibly care system. V help you? Ms Cream: I am Julia Cream, Head of Public A airs Ms Pointon: Direct payments I think are the best for the Alzheimer’s Society. thing since sliced bread. They give a choice as to who Ms Williams: I am Anne Williams, the North West works in our own home. I am going to talk mainly Regional ICAS Co-ordinator for Citizens’ Advice about caring for someone at home, because what is Bureau. We help people through the NHS worrying me is the institutional mindset that is often complaints procedure. brought to a lot of the criteria and the assessment Mr Wheatley: I am John Wheatley from Citizens’ processes. To pick up Julia’s last point, Malcolm was Advice. on direct payments funded by social services. He Ms Thompson: I am Pauline Thompson, Policy moved to continuing care, and then there is the Advisor for Age Concern on care finance. notion of the NHS being unable to directly fund those; and so we are under threat of having our care package upset. This is about the last thing that either the carer or the patient wants. I would like to know why the NHS cannot take over the care package as Q91 Chairman: Can I begin by asking you a broad is, and simply fund it as is. opening question. You have heard the arguments and concerns that have been put to us, and I am sure Q94 Chairman: You make a very bold point about you are aware of some of the evidence we have the way in which we view things through received, and most of you have submitted evidence institutional care, which is something that one or to us. What would be the easiest means of resolving two of us have argued for a long time. Do you feel the current diYculties within continuing care? you are speaking on behalf of other people who are Ms Cream: My top three suggestions for improving caring for someone in the community, in reflecting would be national criteria, national assessment tools that thought? and much better training for people doing Ms Pointon: I do, because I speak at a lot of assessments. We have additional concerns around conferences and seminars and people come up to me the emphasis on physical health needs as opposed to at the end and say, “your experience is my mental health needs, and an issue that is coming up experience”, so I think I am not a lone voice. more recently is the diYculty of continuity of the Malcolm was assessed three times for continuing care package when people move from social care to care, and one of the criteria that was being used was NHS continuing care. that it was not nursing care because I was not a 3038591012 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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10 March 20005 Ms Pauline Thompson, Ms Julia Cream, Mr John Wheatley and Ms Anne Williams nurse, so the care was being defined by who gives it, had one case that has gone through numerous which is fine in an institutional setting but does not reviews at PCT level, gone to the strategic health work if you are working at home because you do not authority level; and the strategic health authority have a nurse on tap. Secondly, somehow the notion found in favour of our client, and the PCT will not that you are caring in a home does need a diVerent honour it; and there is nothing anybody can do. approach, for example live-in care is essential in the late stages of some illnesses, and that is an area in Q95 Chairman: You cannot go to the Ombudsman. which the NHS has very little experience of Ms Williams: We can, but if they decide to go against commissioning. the Ombudsman it is not binding. They can make Ms Thompson: There is a real problem about people recommendations. Even to get to the Ombudsman who get care at home and who are in residential care. stage to look at it and get a result, currently it is There seems to be a mindset that you can only get taking 55 weeks. It will be over another year before fully-funded NHS care in a nursing home, whereas that family will know what is happening, so there it is quite clear in the guidance that you can get it needs to be a more timely review. We did hear the anywhere. It is whether or not that personal care is problems about no records, and that is undoubtedly paid for at home, because obviously it is a combined a problem, but when we have suggested that there package of care, but if somebody’s primary needs must be other medical records around—the health are health needs, then the whole lot is the service keep records for seven or eight years, and responsibility of the NHS. Only last week, I had there must be GP records and incidents when they somebody who rang me up who was told that if they have had interaction in the hospitals. They will not went into a nursing home, they would have the care use them in some instances; they will only use the package fully funded by the NHS, but if he went nursing home records. In many cases in some areas home the personal care would have to be funded by that nursing home no longer exists, and then it just social services; therefore he would have to pay. I am sits on a desk and it is very diYcult to get it moved thinking that this does not match up at all. The other forward. real issue that needs to be addressed if we are going to get anything like a sensible view of continuing Q96 Chairman: Looking at information back some NHS care is that we have to sort out the registered time, where you cannot get information from the nursing care contribution. The very fact that the records of the home—either they are not there or highest band is described in the way it is, which by they are inadequate—you have diYculty accessing anybody’s standards their primary need must be alternative means of working out this person’s healthcare, yet you only get £125; and even the £75 circumstances. band has some diYculties, so unless that gets sorted Ms Williams: It is some of the review panels— we are always going to have this problem that you whether they will accept that evidence; and quite have to be worse in order to get continuing care. often the carer’s evidence is not considered; it is only Mr Wheatley: We would certainly support the call the written contemporaneous records of the nursing for a single set of national eligibility criteria within care that was given at that time. the consistent national approach and better training for professionals involved in the continuing care Q97 Chairman: They might not accept the GP’s process. It is clear to us also that people do not get records that could aYrm the nature of the care that enough clear information about what the process is, was needed— what their rights are for reviews, and how the review Ms Williams: That is the argument we use to say they processes are carried out; but there does also need to should be considering it, but we have to push that. be an information strategy for people. There should My concern is that we deal with a very few number be better record-keeping, clear requirements for of the cases. As was pointed out earlier on, a lot of record-keeping so that we do not see the experience the people who perhaps are not as articulate do not of trying to review cases where there are simply no know—and do not all belong to working men’s contemporaneous records. A lot of the cases we see social clubs—that there are schemes available and are about reviews, so measures to improve timeliness that they would be entitled to them. of reviews would also help, and the problem of Ms Pointon: I would like to suggest that in the making decisions binding where people can be criteria a professional is designated whose dealing with a strategic health authority, a PCT and responsibility it is to tell all families about the in some cases the Ombudsman—but in none of these existence of continuing care. It is self-funders who cases is the ultimate decision binding on the person get the very thin end of the wedge because they do responsible for paying. not have the social worker to their elbow. If you Ms Williams: I would like to add to the wish-list that could say it is the GP’s responsibility—it is we would like to have some independence. The line something everybody has got, and the only answer of questioning in the earlier session was indicating there is a GP; it is their responsibility to tell the that the fact that money is involved and that the PCT family about the existence of continuing care. I went staV are under some pressure and that there is a for five years without knowing it existed. If you do limited budget as to where this money will come not know it exists, then you cannot apply for it. from. The people who are doing the assessment are Ms Cream: I think if carers felt they were going to quite people who are doing the review of their own be automatically oVered NHS continuing care when assessment, and there needs to be a level of the person they were caring for was eligible, it would independence somewhere. As John said, we have dramatically change the system. At the moment my 3038591012 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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10 March 20005 Ms Pauline Thompson, Ms Julia Cream, Mr John Wheatley and Ms Anne Williams overwhelming impression is that they fight tooth and and they cannot understand at all why one will be nail to get it, and it is a battle, which creates a very eligible and the other one who in their minds is more adversarial culture. ill and therefore needs more care cannot get it. You cannot explain it. We have been advised by the Q98 Dr Taylor: We heard in the first session that Ombudsman’s oYce that all the criteria have been PCT and SHA representatives are working for fair checked legally, and all comply with the regulations; and consistent application of the criteria. Talking and the only way we can challenge the criteria—and first to Age Concern, how do you think the we do feel there are some we would like to assessment process and the application of it is challenge—is through judicial review. That is very, working? very diYcult and very expensive. If you have spent Ms Thompson: You must remember that we only several years trailing around diVerent review panels ever get the complaints. I know that there are some and taking days oV holiday and hours and hours— people where it has all happened magically, and they and Barbara has taken years to try and achieve it— do not ring us up to tell us that. Certainly from the judicial review is not an option. I do think we need calls that we have had, I would say with a huge to have a national criteria. amount of diYculty. If you ask for continuing care, we find that people are put oV right from the very Q101 Chairman: Ms Williams, you made the point beginning—“oh, nobody gets it in this area; you about postcode lottery. Is that a point that resonates have to be nearly dead to get it”. So right from the with everybody else. start you are working from a system whereby you Ms Thompson: Absolutely. might find that in that case you will not bother. It is an attitude. I suspect the staV that are working at the Q102 Dr Taylor: You have already said you would higher level are all working very hard to get it even agree with Ms Cream’s first point on national across the board, but then you have lots and lots of criteria. Would you also agree national tools and far front-end staV who may or may not be too aware of better training? changing criteria attitude, so it is a mindset at the Ms Williams: Yes, all of those. We would also want moment within the NHS that they are there to deal some level of independence in the reviews. I really do with acute services, and continuing care is something not think it is right that the people who have made else really. There is a problem there. We certainly the decision should review that decision. find there are people that come to us who have had an assessment tool and have to meet a number of the Q103 Dr Taylor: Can I turn to the interface between criteria at a certain level, and in some cases it seems RNCC and continuing care. You have already said to be very, very rigidly applied. I think it would be that there is not an interface; they are one and the pretty hard for Pamela Coughlan to get continuing same thing eVectively. NHS care based on some of the criteria we have seen. Ms Thompson: EVectively. If you look at the criteria for the highest bands you have to have complex Q99 Dr Taylor: You have been very fair and said you predictable needs; you have to need therapeutic really only get complaints, but you must have some interventions over a 24-hour period. How can they idea from members and supporters that the system describe that as not having a primary health need as a whole is working or is full-stop not working. and only being incidental and ancillary to the Ms Thompson: I would say it is full-stop not accommodation? I think all the time you have to go working. back to the Coughlan case. Although we were talking earlier about its policy, and policy has Q100 Dr Taylor: Obviously ICAS get the shifted, at the end of the day it is the law. There is an complaints. Act and there has been case law which establishes Ms Williams: We get them across the range, and this. Unless it reflects that case law, I am severely traditionally Citizens’ Advice Bureau have always worried, and I feel that if we go for national criteria worked with our colleagues in the rest of the we have to be absolutely straight down the line that voluntary sector. Prior to us dealing with this, we we are properly reflecting the Coughlan case in the would always forward people on, so it has been a bit criteria and in the assessment tools. of a steep learning curve. We deal with all the complaints across the NHS. Continuing care is the Q104 Dr Taylor: What form should our biggest postcode lottery of them all. You will be recommendation take; that we abolish the diVerence aware on this Committee of the problems with between them—that they are really the same? cancer care and all the rest of it, but it is nothing to Ms Thompson: I certainly think that you cannot continuing care—it is so diVerent. Every PCT, even look at one without the other, so both of them will though they have got the same strategic health need to be looked at together. If they are going to authority criteria, have interpreted it very keep the system whereby some people have fully- diVerently. Every professional on the ground then funded care—and a lot of people do not quite interpreted that slightly diVerently, and it is the one realise—they muddle it up with the free personal area where the public have the least comprehension care. It is so diVerent because fully-funded care in a on how it is working. It is very diYcult, especially if care home means that if the home costs £700, the a couple may have a parent each who is in need of NHS pays that £700. If we are looking at having a continuing care, who live literally up the road from system whereby some people, because of their each other but come within two diVerent PCT areas, primary health needs, should be fully funded, which 3038591012 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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10 March 20005 Ms Pauline Thompson, Ms Julia Cream, Mr John Wheatley and Ms Anne Williams we agree with because that has always been the case moved out of that hospital and into a situation since 1948, you then need to sort out that those where there is no nursing care, and to get them out people that do not qualify for that full funding but of the hospital pretty quickly. have much lower nursing needs—that there is a separate band for them, but it is very clear that there is some sort of disparity between one and the other, Q108 Dr Naysmith: Let us be absolutely clear. There and that they are not so muddled up—that you have would not necessarily be a benefit for the hospital in to be so bad to get the nursing band and you have to going for one or another—the money comes from be even worse to get continuing care. the primary care trust. Presumably, it does not go to the hospital to distribute it, it goes to continuing care; so what would the benefit be for the hospital— Q105 Dr Taylor: So a better definition of the Ms Williams: I am sorry, I did miss out that quite banding would be one answer. often there would be a PCT member there, and that Ms Thompson: Yes, one answer. that is why it is. Quite often it is the commissioning Ms Williams: We see a lot of cases where, regardless care manager who will be doing all the reviews. of how many toolkits people are given or criteria, the Ms Thompson: We find very frequently that in spite practice still regularly occurs where people do the of the fact that there were directions issued last year RNCC banding; and then, because you are not that the continuing care assessment has to be done getting the highest level you do not get the first, there is no continuing care assessment done at continuing care. When we get involved and asked all. A friend of mine only last week was telling me, the date of the continuing care assessment, they were “my Mum has got to go into a nursing home next all done at the same time by the same people, and week”—she was in hospital. I said: “Have they done because you have not got the highest level of nursing a continuing care assessment?” She looked at me care, which has been explained is very diYcult—we blankly. “Do you know how much nursing bands had a client who was unfortunately in the very last she is going to get?” Again, she looked at me blankly. stages of the Parkinson mask, which means that So I put down a few questions to her—“you must their condition is very, very stable and they are very, ask this, this and this before you agree that your very rigid, so they are not qualified for the highest Mum can go into a nursing home” and she now has level of nursing care. The fact that that person has continuing care, but it was only because she showed huge nursing care needs means that they do not them the e-mail I had sent her and said, “Should I be qualify for the highest level of nursing care because asking for continuing care?” The social worker said: they are not unstable, and therefore that particular “Oh, yes, I think perhaps you might.” It would not client was refused continuing care. When we got have been raised otherwise. involved and started to ask when they started to do Ms Pointon: I would say anecdotally that although I the continuing care assessment—luckily it has now asked Malcolm to be assessed against the continuing been awarded, but why should that family go care criteria twice he was assessed against the through all of that because there is this confusion RNCC, and so even when you ask for it—I think over the nursing care. We do need to stress there is confusion among some of the professionals independence on review. actually, who do the assessments. Could I say two or three things about the assessment process itself? What has got to me is the notion that one size fits all. Q106 Dr Naysmith: The recommendation should be Malcolm’s assessments took very little account of that the continuing care assessment should be done important features of dementia such as panic first. attacks, hallucinations, inability to communicate or Ms Williams: Yes. understand, and the psychological eVects of the illness. Unless you ask the right questions, you will not get the right answers in the assessments. I think Q107 Dr Naysmith: Why does that not always it is down to the fact that we are using a tick-box happen, or does it ever happen that people say, “if mentality to do these assessments. It is my personal we do the continuing care assessment first it will cost view that human-beings are far too complex to be us more money than if we do the nursing first”? Does reduced to a system of ticks in boxes and Gestalt that ever happen, although it was denied in the psychology told us a long time ago that the whole is previous session that it would ever happen? In your greater than the sum of the parts. A more holistic experience— view should be taken of assessments, which are Ms Williams: It happens daily. As one of them said based on what levels of care the person needs rather in the previous session, quite often these will often be than who should give it. As a carer, as a receiver of done within an acute session, so there will usually be this process, I am strongly of the opinion that the a social worker, possibly an OT or a nurse from that assessments are designed more to discover who ward, and they will do the assessment and they will should be funding the care rather than the level of do both sets of assessments. In a large hospital care that should be provided to this patient. You setting there will be many, many beds taken, with talked right at the beginning about the division bed-blocking and all the rest of it, so there is a lot of between social, personal and nursing care; and if pressure on the ground for the front-line staV to get only that were abolished, then a lot of this palaver this done. Sometimes those two people will make the and professional time would be done away with. I decision. The doctor’s input and other professionals have a vision of the future that care is care is care will come in at an after date, but that person has been whether you are talking about someone who is 3038591012 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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10 March 20005 Ms Pauline Thompson, Ms Julia Cream, Mr John Wheatley and Ms Anne Williams unable to dress themselves or about palliative care. some cases, it has been juggled around, whereby the If the funding for it were in one bucket that was care home has said “these are the fees for your care totally separate from funding from social services and these are extras”; but I worry about that because and health in other means, first of all it would do that means that care homes could just carry on away with a lot of these almost positionings that adding on to the extras and adding on to the extras people take around the problem. Secondly, there and adding on to the extras. We have a real problem would be a continuum of care, and when people with local authority residents and topping-up at the move from one kind of care to another there would moment and I do not want to see that replicated in not be this dislocation. Thirdly, the taxpayer—and the NHS. It is the whole business of funding care this is where I make an openly political point— homes at the moment, and we have concerns that would look more kindly on a hypothecated tax self-funders are subsidising local authority-funded particularly for the sick and the elderly that was residents. I can understand that the NHS does not going into one holistic budget rather than being probably want to pay the self-funding rate if they pooled budgets. That is just how I feel from where I think that is because they are having to subsidise the sit as a lay person. local authority. It is a real issue that needs to be addressed across the board. What actually is the Q109 Chairman: I would not disagree with anything NHS paying for? I have even heard some time ago you said. that in one area the NHS was not prepared to pay Ms Cream: On the RNCC issue, I think the more than social services were prepared to pay for introduction of the RNCC has focused so much of the nursing care. I cannot see how you can have an the debate on what is nursing care as opposed to NHS where, by the very nature of the type of person what is health care, and it has particularly penalised that they are prepared to fund, ie, the illest, is not people with dementia because they get very little care prepared to say “we will have to fund more than from nurses. It has also meant that people in local authorities”; so I suspect care homes are very residential care homes—and you might be in a happy if a local authority-funded resident who is residential care home not because that might be the paying the local authority rate comes under the NHS best setting but it might be the only place that can because they should get more money. I do not think take you as opposed to a nursing home, but then you there is any incentive on care homes where the do not get any contribution if you are self-funding person is self-funding and they are getting more than from the health service. the NHS would be prepared to pay. I am quite sure that homes must think, “if I put in for self-funding we are not going to get as much money for that Q110 Dr Taylor: Ms Pointon made a very good person”. At the moment, as I say, the NHS either point, that the carer is defined by who gives the care. pays all or nothing, so we have been informed by the If it is a nurse that gives it, it is nursing care; and if Department of Health. Therefore it becomes really the same care is given by anybody else it is not. That diYcult in those situations. I would be very reluctant is a very good point. to say “let us go down the third-party top-up route” Ms Thompson: I think the Ombudsman’s case in because we have already had problems with that. I relation to Ms Pointon’s case, where she said it does think it needs to be very carefully worked out with not matter who gives the care—if it is healthcare it is the care homes what exactly the NHS is funding and healthcare—is such an important point. what they are prepared to pay, and they should be prepared to pay what is needed. When you think of Q111 Mr Burns: Ms Thompson, we have heard the cost of a hospital bed, I cannot imagine that too concerns that if a self-funding resident in a care many care homes are charging vastly above that, home becomes eligible for continuing care, the home and most of them will be charging considerably may face a drop in the fees that are paid, and the under that; so even if it is quite an expensive home, resident may then have to move to a less expensive the chances are that it will still be cheaper than home with all the disruption and whatever; or be having somebody in hospital. faced with a requirement to top up the NHS contribution to their care costs. Do you have any Q112 Mr Burns: Ms Cream, it is estimated that up to evidence of such situations, and what advice would V you give us as to how we can address the problem? 60% of care home residents su er from some form of Ms Thompson: We have had people who were told— dementia. because there is no choice of accommodation in the Ms Cream: It is 75%. NHS in the same way as there is in the social services clients—when they were first thinking about asking Q113 Mr Burns: Thank you. The question is still whether or not they should get full funding, that they relevant. We have been told that the current system will not be able to stay in the same home. That, I for determining eligibility for fully-funded NHS care find, really worrying because it meant that some discriminates against people with mental health people were still paying for their care who could conditions, and in particular with dementia. What probably well be being fully funded who have to needs to be done to ensure fairness and appropriate decide that because of this risk of them having to inclusion of those who suVer from dementia? move they will not apply for it. I have had cases Ms Cream: One of the reasons why we were so where the person has been found to be needing full pleased that Barbara Pointon won her case when she funding, and the particular home was more went to the Ombudsman was because it recognised expensive than the NHS was prepared to pay. In that the assessment tools in many areas do not 3038591012 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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10 March 20005 Ms Pauline Thompson, Ms Julia Cream, Mr John Wheatley and Ms Anne Williams incorporate psychological and mental health needs interesting because at the time when the free adequately and so the assessment tools need to be personal care came in in Scotland, there was a long revised. Even most nurses have very little training in ongoing dispute between COSLA and the various dementia so they are not able to recognise mental care home organisations, and they re-negotiated the health needs in that group. Improving that fee levels and the fees went up by quite a lot; but understanding would be extremely helpful and make although the total fees went up, the amounts put into abigdiVerence. Barbara can give practical examples the free personal care and additional to the nursing of how it is done. The other criteria that we are really care did not go up accordingly. That is why I think concerned about is the one around “stable and there is a real problem about—does more and more predictable”. It is probably the one that we get most become the hotel costs and less and less becomes free feedback on, and anger from carers. If you have personal care? It is quite a diYcult system. If you are Alzheimer’s you are going to get worse and you are talking about free personal care, you are talking going to decline, and ultimately you are going to be about the person meeting their hotel costs; but I do in the palliative stage of dementia. Our experience not know whether you would look at a set hotel cost and feedback from people is that as you decline you that everybody would pay and nothing more, and are less likely to be eligible for continuing care, then whatever is above that must be personal care. which is not what you expect. If you are sitting very We have started with looking at the total costs of the passively or lying in a bed, you are perceived to be home and you lop oV a bit for personal care and a easier to care for. We do not agree with that; we bit for nursing care, and whatever is left the person think you need much more intensive support to help has to pay. If you are in a care home that costs £700 you have a good quality of life. We have had people V a week, getting £210 personal care still means that go to the Ombudsman who have come o you are paying an awful lot for the hotel costs. continuing care. The other area that is very diYcult is in the terminal phase. You are eligible if you are in a terminal phase of a condition and it is a very short Q115 Jim Dowd: What is the average cost for a period. When you have dementia, it is very diYcult resident in a nursing home or care home in to say when that period starts, but also it may last for Scotland—what proportion is provided of the bill a very long time, but your needs are the same. If you from the personal care— are getting good care at home from your family Ms Thompson: Obviously, care homes do vary a lot members, your relatives, you are almost penalised in Scotland as well, but I think probably about £400. and you are not getting the support from a nurse. We This is oV the top of my head, and I can get some have people who say, “I am looking after my figures for you if you want. You are still probably mother; she is doubly incontinent, cannot talking about over half being for the hotel costs. As communicate; she is in a bed and needs a hoist and Y well you have to remember in Scotland that they do has swallowing di culties” and they are told, “your not get the attendance allowance, whereas self- care is not healthcare; it is just social care” or “it is funders in England get attendance allowance. In not a primary health need” or “your mother is not ill England you could get £125 worth of nursing plus enough”. Those are very, very common complaints. about £60 of attendance allowance; whereas in Scotland you get £210 through personal care but you Q114 Mr Burns: Ms Thompson, can you just clear do not get £60, so you get less in Scotland than you something up for me because there seems to be some do in England at the moment. confusion and you might be the best qualified to Chairman: It is not as clear as people think. answer. We know that in Scotland there is greater across-the-board provision for long-term care for citizens, and it tends to go under the generalised term Q116 Jim Dowd: So they are only £25 better oV. “free long-term care” in Scotland. You see in this Ms Thompson: Some of them are worse oV.You country people calling for free long-term care based have to be very careful about this terminology. very much on the Scottish example. Does that mean total free long-term care so that if my mother were to go into a residential home then there would be Q117 Mr Burns: There is a lot of confusion in this total free care for her; or is it only parts of the care country, and I think over the next six weeks I think and the package that is actually free, and the there will be even more confusion and I would like individual or the individual’s family, still subject to to have it clarified and on the record. Do you think— assessment, has to pay some money out? and this does not necessarily reflect my view—that Ms Thompson: That is why I said at the beginning it there should be a hotel cost component within is very diVerent, what is the personal care and what continuing care? is the continuing care. In Scotland at the moment if Ms Thompson: I think it would be very diYcult to you are in a nursing home you get £210 a week and introduce because obviously we have the free NHS, if you are in a residential care home you get £145 a and if your primary health needs are health needs it week. But you have still got the rest of the hotel costs is a diYcult thing. People already feel that by stealth to pay for. That is the big diVerence. It is interesting the Health Service has withdrawn considerably. You because since they introduced free personal care into have only got to look at the number of beds that Scotland, those figures have not gone up, and it was have been lost over the last 30/40 years. People who introduced in 2002. By the very nature of the way would have been looked after in a hospital now are care home prices are going up—in fact it was not being looked after in hospitals. 3038591012 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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10 March 20005 Ms Pauline Thompson, Ms Julia Cream, Mr John Wheatley and Ms Anne Williams

Q118 Mr Burns: That raises another point that has ambulance waiting to go into a care home—he had just occurred to me. Do you remember about four not decided which are home she was going to go into, years ago, rightly a decision was taken to introduce by the way, and he was told by the care home that free nursing care, because logically the Health the fee would be £450 a week. Then when eventually Service should have been picking up this bill years her £125 was paid, the fees went up by about £125; ago? so— Ms Thompson: Yes, 2001. Q123 Dr Naysmith: That is exactly what happened. Q119 Mr Burns: Were you then as confused and That is what I am getting at. That happens quite a surprised as I was by October of 2001, when one lot. discovered that it was not going to be what we Ms Thompson: Yes. We still get a lot of letters understood was free nursing care, but actually bands about that. that restricted the amount of money? Did you always expect that? Ms Thompson: No, I did not always expect that. I Q124 Jim Dowd: It has happened, past tense, was certainly involved in the discussions, and at the because it was when it was introduced, was it not, time we were saying it ought to be one band—the that everything just simply moved up by a large diVerence between what residential care costs and margin? what nursing home care costs—but we were told that Ms Thompson: It is still not made all that clear to that could not happen, which is why they ended up individuals, whether or not the fee that they are with the banding system. Obviously, they have got charging includes what the nursing contribution is bands in Wales and in Northern Ireland. I am not going to be, or whether it does not include it. saying that the amounts they pay are adequate there either. The bands have stayed pretty much the same and have not gone up by very much, and they are Q125 Dr Naysmith: I am talking about the situation remarkably low. When you think of the type of where somebody comes out of hospital and people who are in nursing homes, we were very negotiates a fee for a nursing home, and then later surprised how low the figures were, and looking at their assessment comes through saying there is so what they were expecting nursing homes to do—to much money for it, and the nursing home just takes meet someone’s complex, 24-hour nursing needs, the the money. home is given £125 for that. The other thing that Ms Thompson: Which is why it is so important that really did come as a very nasty shock to everybody the assessment is done when they are in hospital so was in 2001 when the people who were self-funding they know how much they are going to get and what got the so-called free nursing care, which is not band, and whether or not they are going to get called that now—it is now called the NHS continuing care. In the case that we quote, the Contribution—and all that happened was that the person went into a care home on 28 September; they homes put their price up by whatever. We still get only wrote on 21 September to say, “you need to do letters about that. People are so, so angry about that. an assessment for continuing care” and every one of It really has not made a lot of diVerence. the assessments was signed oV after the person had gone into the care home, and some of them were V Q120 Dr Naysmith: Is there anything we can do signed o in November. This is one of the big about that? I have written to the Minister on a problems that you have with access, knowing number of occasions when people have said that this whether you are going to get continuing care before should not be happening and this is disgraceful but you go into the care home—and the care homes need nothing happens. to know as well because they should be better funded Ms Thompson: We certainly took it up with the for people who need continuing care. Minister at the time. We were told that because they were self-funders it is a contracts issue. Somebody Q126 Dr Naysmith: This was covered very well in the has already said that self-funders really get the raw previous session, retrospective review and all the end of the deal here, and I would say that is very problems with it, and a couple of you in evidence much the case because they have to negotiate their have said there were problems, but do you think it own contract. Although there has now been slightly was covered, because most of you heard it in the more clarity brought into the care home contracts previous session? Is there anything you would like whereby they have to say which is nursing and what to add? is personal care and what is the hotel cost— Ms Williams: You were asking whether this is the full amount they should have been oVered. We Q121 Dr Naysmith: That is statutory now, is it not? certainly advised a couple of families to seek more Ms Thompson: Yes, but we still find that it does not money, and they decided not to because it had just always happen. been so traumatic. This week, when I knew I was coming here, I rang round the Bureau quickly, to Q122 Dr Naysmith: When did that come in? find out what was happening very recently. One of Ms Thompson: It came in in July or June of last year. the clients in Cheshire has just settled for £16,000, I can check that. People are still finding—in one of and we feel it should be considerably more money the case studies I mentioned in our response, the than that. The son said, “My Dad had started the person who went to find his wife was actually in an process whilst he was alive”, and they felt they had 3038591012 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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10 March 20005 Ms Pauline Thompson, Ms Julia Cream, Mr John Wheatley and Ms Anne Williams won the token that Dad was right. They had got Ms Pointon: From the point of view of the carer, £16,000 and they just cannot be bothered facing any fishing out all the paperwork for retrospective more of it—and this has taken five years. review, which I had to do going back seven years— Ms Thompson: I would have some real concerns I am a squirrel and I found it all, but it took me hours about the robustness with which some strategic and hours and hours to get it into order to present health authorities have trawled. When you are trying the case to the panel. Full-time carers, 24/7 carers, to talk numbers and how to reflect it, it is really just do not have the energy or sometimes they just do diYcult to do that, because if you do not do much to not want to have anything to do with this. What about all those who have got nobody to shout for find out who is out there you might end up only them and get it all out? Why I am talking about this getting the really obvious cases coming your way. If is because I want to stress two things about people you do an awful lot and get lots of other people, then who are being cared for at home. One is the the percentage of cases that get continuing care importance of partnership with the family carer. We might be much lower. Certainly people in residential are the people who see most of the patient and know care homes and people at home have probably their needs intimately, and I still cannot understand missed out because there is nobody who is really why when social services assess the carer of someone responsible for making sure and keeping a weather with dementia goes through the assessment and you eye on whether or not they now fall into continuing sign it, that it is an accurate picture. I found the care criteria. health assessments that were done of my husband— one of them had 14 major inaccuracies in it because I had not seen the assessment before it was sent in to Q127 Chairman: Going into working men’s clubs the panel, which then decided that Malcolm’s care seems the best way! was social; but missing from the assessment was the Ms Thompson: Yes, but not everybody goes there. fact that he had frequent fits, so how could his care Mr Wheatley: The process is long-winded and very be stable? The other thing about care at home is that painful for people. A lot of the work that is going on in the criteria please can you make sure that respite in the ICAS bureau is detailed casework and is part of the package? Without proper respite the complex over years. There are review stages and carer is going to go down, and when the carer goes complaint stages to the process, and there is lots of down the whole ship goes down with them and they batting backwards and forwards between primary become a bigger burden. I know people on the whole care trusts and strategic health authorities. Trusts are not being cared for at home, but in the future are not bound to follow the outcome of reviews. they will have to be because of the burgeoning elderly population, and there will not be the care There is a bit of confusion over which cases go to the home places available. So please keep the care at Health Commission and which cases ought to go to home focused in the criteria. the Ombudsman. There is a poor evidential base for Mr Bradley: I wanted to pick up on the figures you doing the reviews and lack of clarity about what is are giving on the comparison between Scotland and admissible, and poor decision-making right the way England in terms of home costs and contributions, through. I think we are talking about a process that and if you could send us a note on that it would be it is diYcult for health professionals to understand; very helpful. but it is almost impossible to explain to people what Chairman: Thank you all for an excellent session. the basis for review is; and any policy grounded on We are most grateful to you, particularly you Ms those diYcult foundations is bound to fail. Pointon; it has been very helpful having you here.

Memorandum by Royal College of Nursing (CC 21)

Summary — Whilst the RCN welcomes the proposed national framework for eligibility criteria, we consider the scope of the criteria to be only part of the problem. The criteria must be altered to reflect psychological needs and must reflect the level of nursing care required. — Access to funding must be based on a patient’s need, and the process of determining eligibility should focus on rehabilitation rather than a patient’s dependency. — There is a need to account for the lack of choice exercised by patients in NHS continuing care services. It is RCN members’ experience that patients currently have limited choice over access and provision of services. — The definition of nursing in the Health and Social Care Act 2001 needs to be reformed as the current definition does not cover the time spent by a care assistant, delegated by a registered nurse. — The process of review and restitution has addressed some financial concerns of patients, but there remains a need to recognise the emotional impact on patients and carers, as well as the excess burden on nursing staV. — The link between NHS continuing care and the top band of funded nursing should be re-examined to better reflect consistency as the boundary is currently unclear. 3038591013 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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1. Introduction With a membership of over 370,000 registered nurses, midwives, health visitors, nursing students, health care assistants and nurse cadets, the Royal College of Nursing (RCN) is the voice of nursing across the UK and the largest professional union of nursing staV in the world. The RCN promotes patient and nursing interests on a wide range of issues by working closely with Government, the UK parliaments and other national and European political institutions, trade unions, professional bodies and voluntary organisations. The RCN warmly welcomes the Committee’s inquiry into the issue of NHS continuing care. Many of our members work directly with patients who have been denied access to funding for NHS continuing care or experienced inequity as a result of the assessment process. Our members work in a variety of settings including care homes, hospitals and the community and experience at first hand how distressing seeking funding for NHS continuing care can be for both patients and their families. The RCN is conscious of the close inter-relationship between NHS continuing care and the registered nursing care contribution (funded nursing), and for this reason some of our evidence relates to both policies.

2. The Written Ministerial Statement on NHS Continuing Care Issued by Dr Stephen Ladyman on 9December 2004 2.1 The RCN understands the Minister’s statement to mean that he has recognised the need for further work to ensure that those older people (and indeed other patient groups such as children, those with learning diYculties, mental health needs and young people with physical disabilities), who are eligible for NHS continuing care receive it. We understand that the intention is to achieve consistency and fairness in the development and application of NHS continuing care criteria. Whilst the focus is on NHS continuing care we hope this work will also address the many problems with funded nursing, as outlined in our evidence. We also understand that the Minister has acknowledged the need to significantly improve the information available to patients and their families to ensure that they understand the criteria and how they are applied. 2.2 Additionally, we hope that the Minister’s statement will result in greater participation of clinicians in the decision making process. For example the panels, which make the final decision on a patient’s eligibility for NHS continuing care, should be made up of clinicians who have the appropriate knowledge and skills to make informed decisions and cases should be presented by the assessing clinician. At present many panel members seem to be finance or commissioning directors.

3. How the Changes will Build on the Work Already Undertaken by Strategic Health Authorities in Reviewing Criteria for NHS Continuing Care and Developing Policies 3.1 The RCN is pleased that there has been recognition of the need for greater consistency and fairer access to NHS continuing care and welcomes the move towards a proposed national framework for eligibility criteria. We very much hope that this will go some way towards addressing the current diYculties experienced by patients in accessing funding for their care. 3.2 However the RCN believes that the scope of the criteria is only part of the problem. If the criteria are changed to reflect a national framework, access to NHS continuing care will remain restricted for some because of the manner in which the criteria are applied. In particular the criteria need to reflect a much greater recognition of the needs associated with emotional and psychological wellbeing. This particular issue was highlighted in the Health Service Ombudsmans report in February 20032. Currently the focus of the criteria for both continuing health care and funded nursing is dominated by physical health needs. Because of this many older people who have dementia or other mental health conditions are unable to access funding as mental health needs are often defined as personal care. The eligibility criteria need to be reformed so as to reflect the true nature of care required. 3.3 Example: Mrs T was diagnosed with Alzheimer’s dementia. She had seriously impaired communication abilities and was aggressive. She fell frequently, sometimes between three to eight times a day. She hallucinated and had major problems in terms of eating and drinking. She needed help with all normal activities of daily living; she needed constant review of her medication and was assessed as requiring continuing health care. However this application was turned down by the continuing health care panel. This case highlights the inequity which pervades the system for those who have mental health needs. If the eligibility criteria took into account mental health needs, we believe Mrs T would have been eligible for NHS continuing care. 3.4 Similarly, the RCN believes that the changes to continuing health care criteria will not resolve wider problems around access to care, unless there is far greater agreement about what constitutes health care and what constitutes nursing care. Example Mrs C and Mrs E are both residents in the same primary care trust. Both women are severely disabled by strokes with swallowing diYculties. They were separately assessed as eligible for NHS funded continuing care, to be delivered in their own home. In Mrs C’s case, a 24 hour package was delivered, with two carers provided during the night and most of the day. In Mrs E’s case, carers provided four visits per day, plus a sitting service each morning. Both Mrs E and Mrs C required similar

2 The Health Service Ombudsman Report on NHS funding for long term care of older and disabled people, February 2003. 3038591013 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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levels of assistance with turning and pressure relief at night yet one received two carers and the other did not. Cases such as these are not uncommon and reflect the confusion which exists around determining what constitutes nursing care. Nurses report their increasing concern and distress that patients with clear nursing needs are being denied the care that they require due to the criteria used to determine both continuing health care and funded nursing. As a result this matter has now been referred for debate at RCN Congress in April 2005. 3.6 Once a nursing assessment is carried out to determine a patient’s eligibility for NHS continuing care funding, recommendations are made to a funding panel. RCN members advise us that in some instances, panels are overturning recommendations made by nursing staV because of local financial constraints. Our members are concerned that access is being driven by budgetary concerns rather than need which is both demoralising for staV and upsetting for patients. The RCN has been advised by a local practitioner that in one locality in the East of England social services staV are advised not to apply for funding for their clients as it is not available. Elsewhere, experienced clinicians report that their clinical assessment is overturned by panels with no explanation being oVered to either the clinician or the patient. The RCN strongly believes that a patient’s need should be the basis for determining eligibility. 3.7 Example: Mrs Jones is a general nursing home resident funded by social services with NHS funded nursing care. She has severe osteoporosis with curvature of the spine exacerbated by radiation treatment given 30 years previously for another condition. She experiences uncontrollable pain has TB, angina, diverticulitis, a prolapsed uterus, a gastric ulcer and glaucoma and a previously fractured hip. She was assessed by the NHS funded nursing care team and a high determination for nursing was recommended due to the complexity of the past medical history and diYculties in delivering her nursing care. The trigger questions for continuing health care indicated that continuing health care funding was required. However her application was turned down merely because the patient did not comply with her pain control and therefore it was felt that continuing health care was not required. 3.8 The RCN believes that the current process for allocating funding for NHS continuing care does not reward best nursing and therapy practice, a problem which will not be addressed under the current proposals. At present the process focuses on the patient’s dependency and stability and as a result fails to recognise the complexity of a patients condition. Instead the focus should be on a rehabilitation/re enablement approach, which seeks to maximise a patient’s potential3. The RCN also believe that the process of funding fails to recognise the positive contribution which expert care can have on a patient’s stability. In the interests of best practice this should be rectified in the process for accessing NHS continuing care funding. 3.9 Example: Mr Smith, previously a long stay patient in a psychiatric hospital, has chronic obstructive airways disease, schizophrenia, frequently falls and has a history of choking as he gulps his food. He also has episodes of destructive and aggressive behaviours which it is thought are due to flashbacks from his war experiences. The assessing nurse considered that he should be in receipt of continuing health care funding due to his extensive nursing needs. However this was turned down because in the opinion of the panel: his episodes of aggression only lasted for 15 to 30 minutes and his very complex care needs could be met by a care assistant. If expert nursing is not available to patients such as Mr Smith then their instability is likely to increase. 3.10 Furthermore, a Department of Health commissioned evaluation of funded nursing4 highlighted the potential for “added value” in terms of prevention, treatment, and rehabilitation of residents, building on improving relationships between care home staV and PCTs. Yet in spite of this the focus for funding continues to driven by the dependency of the patient. Example: Mrs L was reviewed as requiring some rehabilitation which included a proactive approach to seeking solutions to her posture, positioning, eating and drinking and stimulation in general. Previously Mrs L had been nursed in bed for nearly a year and could not eat orally as she could not sit upright to eat and drink. She was therefore fed by tube. She had no physiotherapy as this was not provided to nursing homes and the PCT would not accept responsibility for providing adequate static seating at a cost of £1,000. Had the funding been available, Mrs L would have been able to leave her bed, and eat and drink in an upright position, thereby facilitating her rehabilitation.

4. Whether the Review of Past Funding Decisions has Succeeded in Addressing the Needs of Patients Wrongly Denied NHS Funding for their Long Term Care 4.1 The RCN welcomed the retrospective review of past funding decisions as an attempt to address the many diYculties faced by patients. Whilst the review has partly addressed the financial needs of those patients who were wrongly denied funding, a number of other issues still need to be addressed. 4.2 The emotional and physical strain on patients and their families engaged in trying to access funding for NHS continuing care is for many, immeasurable. Nurses have experienced significant distress when trying to explain to patients and their families why funding is not available for services which they believe

3 Wild D & Ford P (2001), “An Evaluation of the Registered Nursing Care Contribution Tool for the determination of residents” needs for registered nursing care when in Nursing Homes. Department of Health, London. 4 Szczepura A, Davies C, Wild D, Johnston I, BiggerstaV D, Ford P, Vinogradova Y. NHS Funded Nursing Care in Care Homes in England: An Initial Evaluation. Centre for Health Services Studies, University of Warwick, Coventry, UK. 2004. 3038591013 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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to fall within the remit of long term nursing. The recent panorama documentary5 gave powerful examples of patients who failed to be awarded continuing health care funding and many nurses contacted the RCN to express their concern and to share similar experiences. 4.3 The RCN believes that the ongoing process of review should operate under an established system which can ensure that patients’ needs will be met. Primary Care Trusts have diVerent systems in place for carrying out continuing care assessments, although most employ a team of nurses to administer both continuing health care assessments and registered nursing determinations. We have learnt from our members that in practice this can mean that nurses have to work between 8 and 20 extra hours per week to administer the system. This time is unpaid and often unacknowledged. The result of the review and restitution process has been to significantly increase nurses’ workload and if patients’ needs are to be adequately addressed, proper systems for review, monitoring and responding to changed needs must be resourced and put in place. 4.4 The level of demand for care home beds remains very high, however market forces are reducing the number of available beds for nursing care. The market has declined for care homes due to the funding situation and beds are being taken out of the market, despite the need for beds in some areas being undiminished. The RCN conducted a Care Home Survey in 2004 and found that a fifth of respondents were concerned that the care home in which they worked may close due to financial pressures6. Similarly, we are aware that a major care provider in England is struggling to keep their nursing provision available as they are running at a loss for nursing services. In practice this means that patients who have achieved restitution may not actually be able to access care home services in their area. 4.4 The RCN considers that there is a disparity between health and social care definitions of health and nursing care needs which the review process has highlighted but not addressed. Example: Mrs Brown has extensive pressure sores, is incontinent of urine, has a urinary infection, is seriously underweight, and is unable to drink or eat without help and supervision. Social care staV assessed the patient as requiring social care yet nurses assess the patient’s needs to be nursing. The RCN believes that such disparity is primarily caused by budgetary constraints, but is exacerbated by the definition of nursing in the Health and Social Care Act 2001. The Act requires that nursing which is delegated be reconstructed as social care and subject to means testing. As a result nurses and social workers face daily tensions in defining their interventions and associated budgets.

5. What Further Developments are Required to Support the Implementation of a National Framework 5.1 The RCN believes there is an urgent need to amend the definition of nursing as outlined in the Health and Social Care Act 2001. The current definition does not cover the time spent by a care assistant providing care which has been delegated by a nurse. In practice this means that many patients do not receive funding for care which has been delegated by registered nurses. Such a process creates a false division in care and fails to recognise the nursing accountability for such delegated care. Client groups in other care settings do not have their nursing defined by the contribution of the registered nurse only. In 1997 the RCN developed a nursing assessment tool for use with older people7. This tool was oVered to the Department for Health as a framework to be used when assessing the need for long term nursing in both continuing care and care home settings. The RCN believes that this tool clearly defines nursing, reflects nursing needs and oVers a useful way forward in developing further work on what constitutes nursing for older people who have long term care needs. Use of such a tool would enable nurses to identify nursing needs and achieve accepted best practice. By focusing on abilities rather than dependency it would also assist in the maximisation of patient’s abilities. 5.2 The RCN believes it is essential that investment in training and development is allocated for all health care staV who come into contact with patients who may be eligible for NHS continuing care and funded nursing. The Health Service Ombudsman has also identified this as a priority and has recommended that training and development is supported to “expand local capacity and ensure that new continuing care cases are assessed and decided properly and promptly”8. The process of accessing funding is not fully understood by many health professionals, and widespread training would help to ensure patients are given as much support and guidance as possible. It is also imperative that this training emphasises shared values between health and social care staV so that staV understand the needs of patients and how they can best be met. Allied to this, there is a need for Strategic Health Authorities and Primary Care Trusts to enable nurses to work within their professional code of conduct. At present nurses feel that they often have to work within criteria which fail to recognise best practice and are not in a patient’s best interests. 5.3 The RCN believes that there is a need to develop a new framework for the eligibility criteria themselves, so as to ensure they reflect the level of nursing and therapy care required. Currently, the threshold at which the criteria become applicable is too high, meaning that patients with a high level of

5 BBC Panorama, “Fighting for Care”, 18 July 2004. 6 RCN Care Home Survey 2004, “Impact of low fees for care homes in the UK”. 7 RCN (2004) Nursing Assessment and older people, a Royal College of Nursing toolkit. 8 The Health Service Ombudsman for England, “NHS funding for long term care, follow up report”, December 2004. 3038591013 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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dependency are only eligible for a low level of funding for registered nursing. For example our members report that unless patients need daily care from a medical consultant or their condition is extremely unstable they fail to be awarded funding for continuing health care. This is despite their condition and associated needs being recognised by nurses as requiring intensive nursing care. Patients requiring continuing health care should in the first instance undergo a full multidisciplinary assessment upon which any assessment for continuing health care should be based. The reality is that many patients are still not receiving a full multidisciplinary assessment. 5.4 Similarly there is a need for the eligibility criteria themselves to be reformed so as to reflect a change in emphasis to rehabilitation and re-enablement. Currently, the criteria focus on the level of a patients’ dependency. This creates a perverse incentive whereby if a patient’s condition improves, the level of funding available decreases. Best practice in nursing older people is based on a rehabilitation/re enablement approach to care9. Criteria which emphasise rehabilitation and re enablement would ensure that patients receive nursing and therapy services which aim to promote abilities, enhance quality of life and in the longer term may well result in the need for less care services. 5.5 Strategic Health Authorities and Primary Care Trusts need to be enabled to achieve a cultural shift in the way that they view access to NHS continuing care and funded nursing. There is a need for a more global consideration of care needs which explores the full potential of local provision beyond a focus on clearing beds in acute hospital trusts. In this way the current focus on resolving bed blocking might be viewed more as a way of providing the best care for patients through providing greater choice that is more patient focused. Currently the focus on clearing beds means that the needs of patients are not the key determinant for discharge. 5.6 The RCN believes there is also a need to re-examine the link between funding for NHS continuing care and the top band of funded nursing. Under the current system, there is a lack of consistency and understanding about those needs that trigger continuing health care and those that trigger the top band of funded nursing. The boundary between continuing health care and NHS funded nursing is unclear, which may be due to similar terminology being used in both sets of criteria. The consequence is that for patients whose needs place them on the boundary between levels of care, there may be diVerent interpretations between assessor, patient or carer as to whether the patient is eligible for NHS continuing care funding. Our members report that some patients who have extensive nursing needs still do not receive funding for NHS continuing care, nor do they attract the higher band for funded nursing. It would appear that across England there is a serious lack of consistency over which patients receive funded nursing and which patients receive NHS continuing care. 5.7 RCN members believe there is a need for the balance to be redressed in the system to account for the lack of choice exercised in NHS continuing care. Eligibility criteria must promote choice so that patients can access the continuing health care they need in the location that is best suited to them. This should include their own homes if they so choose. For instance, current provision does not seem to include special seating so that a patient can receive appropriate care. Some PCT’s do not accept responsibility for provision of seating which may be needed in order to provide good postural support or a good position for safe swallowing. This means that some patients have no choice but to receive care in care homes so that they can access the kind of seating that they need for health care. Similarly there is a lack of consistency about the level of care patients who are in receipt of funded nursing can access, as the care received may not be holistic. Not only does the funding result in delegated care being charged for but also many residents of care homes are not receiving other services that they may require, eg physiotherapy, speech therapy and occupational therapy. As a result patients are being denied the opportunity to respond to rehabilitation and an enhanced quality of life. 5.8 The current situation whereby care home fees exceed the level of NHS continuing health care contributions also needs to be addressed. In practice this means that the individual pays a “top up” fee to cover the extra charge which is unfair as it means that inequity still persists at the heart of the system. There is an urgent need to resolve matters pertaining to the funding of continuing health care. The true cost must be reflected in the funding allocated to care homes so that they can provide the care which is needed.

6. Recommendations — The membership of continuing care funding panels should include clinicians with the appropriate knowledge and skills, to ensure decisions are made on the basis of clinical need. — Eligibility criteria for NHS continuing care should be reformed so as to reflect a greater recognition of the patients’ emotional and psychological needs. In addition the criteria should also be reformed so as to place a greater emphasis on rehabilitation and re-enablement. — The definition of nursing as outlined in the Health and Social Care Act 2001should be amended so as to include the care delegated by a nurse to a care assistant. — Training and development should be made available for all health care staV who come into contact with patients who may be eligible for NHS continuing care.

9 Royal College of Nursing (2000) “Rehabilitating Older People”. 3038591013 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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— The link between funding for NHS continuing care and the top band of funded nursing should be re-examined in order to reduce the confusion which currently exists. — Provision of NHS continuing care services should be reformed so as to allow patients to exercise a greater level of choice over access to and provision of services.

Memorandum by English Community Care Association (CC 4)

1. The English Community Care Association The English Community Care Association (ECCA) is the largest representative body for community care in England. Working on behalf of small, medium and large providers, it speaks with a single unified voice on behalf of its members and the sector, and seeks to create an environment in which providers can continue to deliver and develop the high quality care that communities require and deserve. In order to do this, ECCA embraces the challenges for the short, medium and long term. Individuals, residents and their families recognise the value of high quality care services. ECCA’s vision is of a world where the value of independent care homes and care services are understood and promoted by all stakeholders and funded appropriately, and where people who use these care services have a full range of choices and the flexibility to select the care home, or services, that most suits their needs and tastes. ECCA’s core mission supports user choice, empowerment and quality services. ECCA has an inherent respect for partnerships. It understands the importance of strength, unity and commonality of purpose. Above all, ECCA has a commitment to the continued role of a quality conscious independent sector; one that oVers real choice and value for money, and where providers are respected and treated fairly. ECCA’s mission is to ensure that high standards of health and social care in the independent sector can be promoted and protected by: — Providers having a voice in the strategic direction of future social and health care services. — Social and health care being properly and fairly funded enabling high quality care for all receiving care home or other independent care services. — Regulation being eVective, proportionate and intelligent.

2. Ministerial Statement on NHS Continuing Care Issued by Dr Stephen Ladyman on 9December 2004 ECCA welcomed Dr Stephen Ladyman’s statement on 9 December 2004. ECCA has long called for consistency of approach with regard to continuing care assessment and funding for residents in independent care homes. ECCA welcomes any measures that will clarify the system with the ability to be nationally promoted. The current system is both diYcult for individuals and their families to understand and to navigate the system. Residents and their families may turn to care homes for advice and it is also diYcult for them to understand. Small and large independent care providers experience a range of problems and a lack of consistency including the fact that in some areas the NHS did not believe that NHS continuing care could be provided in an independent care home setting.

3. How the Changes Will Build on the Work Already Undertaken by Strategic Health Authorities in Reviewing Criteria for NHS Continuing Care and Developing Policies ECCA would ask that the Department of Health works with independent providers alongside Strategic Health Authorities in their work to develop a national approach to continuing care; especially involving providers that have a wide experience of good practice and diYculties. In order to achieve a consistent national approach the Department of Health must review each of the 28 Strategic Health Authorities criteria. These must then be compared and contrasted in order to seek explanations for current variations in the criteria. ECCA queries whether a national approach would require a national training and guidance framework in order for people to implement the criteria consistently. In order to be successful implementers of the new national criteria must have been allocated adequate time to familiarise themselves with their criteria. They must also have forged all their local networks thereby involving the independent providers and making all parties aware of the changes and to have given them the opportunity to question and discuss concerns. 3038591014 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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4. Whether the Review of Past Funding Decisions has Succeeded in Addressing the Needs of Patients Wrongly Denied NHS Funding for their Long Term Care ECCA cannot determine whether the review has been successful as it is not clear how many people should have been awarded continuing care. The numbers of people who have come forward are however clear, but this may not be a good reflection of the total who would have been eligible. Anecdotal evidence indicates that residents and relatives have been reticent in applying believing that: — they were not eligible because they were not on the higher banding of the Registered Nursing Care Contribution (RNCC); — they were in a residential home as opposed to a nursing home; — they had no awareness that they could apply; — they did not want to appear money grabbing particularly after their relatives had died; and — the system was simply too cumbersome. In addition, care homes themselves may not have had the time to review past cases or encourage residents and their families to apply for continuing care funding. ECCA is not aware that the NHS has taken an active stance on contacting existing residents nor explaining fully the process by which they can ask for a retrospective review for their continuing care requirements.

5. Further Developments Good record keeping is essential to ensure that those entitled to continuing care can be identified. It would be helpful for the NHS electronic system to be joined up with the social care sector and indeed the independent sector. The NHS should be required to insure that all independent care homes in its area are made aware of the new national framework and that care homes are given the opportunity to attend seminars and briefings on the issue. The NHS should utilise wider networks to reach individuals for example Care Direct/Link-Age, Social Workers, those carrying out community assessments, GPs, Citizen Advice Bureaus, Advocacy Groups, Charitable Networks and Financial Advisers. All these bodies should have access to written literature that they are able to distribute. ECCA would welcome the opportunity to disseminate details of the criteria to its members and in the wake of the original Ombudsman’s report in February 2003 ECCA (formerly the Independent Healthcare Association) produced the attached briefing paper (Appendix I).

Memorandum by British Geriatrics Society (CC 19) The British Geriatrics Society The British Geriatrics Society (BGS) is the only professional association, in the United Kingdom, for doctors practising geriatric medicine. The 2,200 members worldwide are consultants in geriatric medicine, the psychiatry of old age, public health medicine, general practitioners, and scientists engaged in the research of age-related disease. The Society oVers specialist medical expertise in the whole range of health care needs of older people, from acute hospital care to high quality long-term care in the community.

Geriatric Medicine Geriatric Medicine (Geriatrics) is that branch of general medicine concerned with the clinical, preventive, remedial and social aspects of illness of older people. Their high morbidity rates, diVerent patterns of disease presentation, slower response to treatment and requirements for social support, call for special medical skills. The purpose is to restore an ill and disabled person to a level of maximum ability and, wherever possible, return the person to an independent life at home. The Society is delighted to be given the opportunity to contribute to this debate and would comment as follows:

Summary The BGS recommends: 1. Regardless of the source of funding no individual should enter a system of domiciliary or institutional care without prior exposure to an eVective system of specialist and multidisciplinary assessment backed up by appropriate treatment and rehabilitation. 3038591015 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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2. Partnerships must be set up between, district nursing, primary care, general practice, therapies, old age psychiatry and geriatric medicine to recognise and meet the needs of vulnerable older people receiving continuing care. 3. Older people in care homes need to be recognised by practitioners as a discrete population and a case management system set up to meet their needs. 4. Enhanced, appropriate education, training and development must be in place for practitioners caring for the most vulnerable older people in continuing care. 5. Clinical governance systems must be in place for all providers of NHS continuing care.

1. The Written Ministerial Statement on NHS Continuing Care Issued by Dr Stephen Ladyman 1.1 The BGS welcomes the development of a national consistent approach to assessment for fully funded NHS continuing care. The recent follow up report by the Ombudsman in December 2004 identified the lack of national guidance as an impediment to eVective restitution for previous failures to grant NHS continuing care status.(1)

2. How the Changes will Build on the Work Already Undertaken by the Strategic Health Authorities in Reviewing Criteria for NHS Continuing Care and Developing Policies 2.1 The considerable commitment shown by the Strategic Health Authorities, Primary Care Trusts and local authority partners to securing agreement to establish workable arrangements should contribute to the implementation of national guidance. We are of the opinion that the lack of national guidance in England and Wales has resulted in hardship and injustice for some individuals and that a fair and transparent system of funding should operate across the country. 2.2 The BGS is in complete accord with the statement issued by the Ombudsman in December 2004 where she recommended the Department of Health should lead further work in six key areas (1): — “Establish clear, national minimum eligibility criteria which are understandable to health professionals and patients and carers alike. — Develop a set of accredited assessment tools and good practice to support the criteria. — Clarify standards for record keeping and documentation both by health care providers and those involved in the review process. — Support training and development to expand local capacity and ensure that new continuing care cases are assessed properly and promptly. — Seek reassurance that the retrospective reviews have covered all those who have been aVected. — Monitor the situation in relation to retrospective reviews using the lessons learned to inform the handling of continuing care assessment in the future.”

3. What Further Developments are Required to Support the Implementation of a National Framework? 3.1 The BGS welcomed the Department of Health’s response Policy and guidance issued on Continuing Care Assessments and Hospital Discharge in February 2004 which clarified the assessment procedure and stressed the importance of communication with families by professional members or clinicians(2).Wewere pleased that the importance of the single assessment process, involving the multidisciplinary team as well as the input of a Consultant Geriatrician, was recognised. We see this as a way of facilitating the implementation of eVective comprehensive geriatric assessment. However the BGS believes that these recent changes will not bring about suYcient change to the care of frail older people. Our opinion is that: “Regardless of the source of funding no individual should enter a system of domiciliary or institutional care without prior exposure to an eVective system of specialist and multidisciplinary assessment backed up by appropriate treatment and rehabilitation. By maximising an individual’s health and functional capacity their need for and usage of expensive prosthetic long term care can be minimised. Comprehensive geriatric assessment is the cornerstone of eVective health and social care for older people and has been identified as a major clinical advance that systematically reduces the disability and institutionalisation of older people.”(3) 3.2 The BGS welcomed The Department of Health’s most recent guidance in 2004 stating that fully funded NHS continuing care may be provided, subject to clinical advice, in a range of settings: a nursing home, hospice, at home or in hospital(2). It has considerable reservations about the ability of primary and community health care to meet the needs of these extremely vulnerable patients without systems, setting up partnerships between, district nursing, primary care, general practice, therapies and geriatric medicine. 3.3 Older people designated as requiring Social Service funded care in homes often have very similar and overlapping needs as the patients requiring NHS continuing care. A significant majority of older people in care homes suVer from chronic neuro-degenerative diseases such as Dementia, Parkinson’s disease and 3038591015 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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Cerebro-vascular disease (Strokes). It is thought that at least 60% of care home residents suVer from Dementia. The BGS in a joint publication with The Royal College of Physicians and The Royal College of Nursing argued in 2000 that unless older people in care homes are recognised by practitioners as a discrete population their health needs will be over-looked(4). Enhanced, appropriate training and development must be in place for practitioners caring for the most vulnerable older people in continuing care. 3.4 The National Minimum Standards for Care Homes made the NHS responsible for meeting the nursing, medical and rehabilitation needs of residents and in addition requires the NHS to provide other services including chiropody, dentistry and audio logy and optician services.(5) Despite this a recent national study demonstrated the diYculty care homes experience accessing expert advice from specialist old age psychiatry, geriatric medicine, speech and language therapy, physiotherapy, pharmacy and rehabilitation services, podiatry, dietetics, district nursing, and general practice. The study demonstrated variations in the range of services oVered by GPs, as well as marked regional variations in the availability of NHS services. Only 83% of homes could contact a geriatrician when needed, usually via a GP, and only 6% could contact one directly. Charges were made for occupational therapy in 38% of homes, physiotherapy in 39% of homes and speech and language therapy in 29% of homes. These people have equal rights to health care and the survey demonstrates inequity of care as the most vulnerable have become the most excluded(6). Clinical governance systems should be set up to ensure equal access of care. 3.5 General practitioners are unhappy about taking on what was an extra and complex addition to their already busy workload. Frail older people who were once the care of geriatricians became the responsibility of GPs and the already over stretched community and rehabilitations services. They found the increasing workload from care homes diYcult to manage. For successful NHS continuing care and health care in care homes the recommendations made by the joint report in 2000 must be implemented(6). 3.6 The recommendations are as follows: — “To introduce a specialist gerontological nurse specialist for homes. — To introduce a General Practitioner with a special interest. — To include a specialist pharmacist for homes. — To increase inputs from professionals allied to medicine. — To introduce regular multi-disciplinary consultant sessions and consultant visits to homes. — To improve care planning through the introduction of formal approaches. — To develop teaching nursing homes in each region.” 3.7 The recent Department of Health’s publications on the management of long term conditions and case management(7), (8), (9) provides the Primary Care Trusts with an opportunity to review and recognise the needs of this vulnerable, not homogenous population with long term conditions resident in care homes. They are uniformly old and the vast majority have cognitive impairment. The BGS recommends that residents of care homes could benefit from a case management system which has been demonstrated to be eVective in Care Homes in the USA(9). This would improve care planning with end of life care a particular priority in nursing homes. 3.8 These methods of providing care to our most vulnerable and frail older people could not fail to raise the quality of NHS continuing care. National guidance from the Department of Health recommending and supporting these developments would reduce the geographic variation in the provision of NHS continuing care as well as the ability of those older people to access appropriate health intervention wherever they are living. The Society would welcome the opportunity to give oral evidence.

References (1) The Parliamentary and Health Service Ombudsman. NHS Funding for long term care: follow up report. 2004. (2) Department of Health Continuing Care assessments and hospital discharge London DoH 2004. (3) Lubel, D et al: British Geriatrics Society Submission of Evidence to The Royal Commission on Long term Care for the Elderly. BGS; London 1999. www.bgs.org.uk. (4) Royal College of Physicians. The health and care of older people in care homes. Report of a joint working party of the Royal College of Physicians, the Royal College of Nursing and the British Geriatrics Society. London: RCP 2000. (5) Department of Health. Care Homes for Older People. National Minimum Standards. London: The Stationery OYce 2002. (6) Jacobs S , Alborz A, Glendinning C, et al. Health Services for Homes; A survey of access to NHS services in nursing and residential homes for older people in England. NPCRDC: 2001. (7) Department of Health. Supporting people with Long Term Conditions. An NHS and Social Care Model to support local innovation and integration. London DoH. 2005. 3038591015 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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(8) Department of Health. NHS Improvement Plan: Putting people at the heart pf public services. London DoH 2004. (9) Kane, R L, Keckhafer, G, Flood, S, et al (2003) The EVect of Evercare on Hospital Use. Journal of the American Geriatrics Society 51 (10), 1427–1434.

Witnesses: Mr John Pye, Continuing Care Nurse, Royal College of Nursing Member, Mr Martin Green, Chief Executive, English Community Care Association, Dr Jackie Morris, Deputy Chair, Policy committee, British Geriatrics Society, and Ms Jo Peck, Head of Nursing and Clinical Governance, Medicine Division, University Hospital Lewisham NHS Trust, were examined.

Q128 Chairman: Welcome to our last group of believe was perversity in that we reward people’s witnesses. Will you briefly introduce yourselves to dependency rather than their potential to improve. the Committee? If I may, Chairman, I will give you an example of Mr Pye: My name is John Pye, I am presently that in my local area. We have a number of patients employed as Head of the Commission for who we have assessed using the RNCC and those Continuing Healthcare for Cheshire and I am here assessments were made on the wards in hospitals and representing the Royal College of Nurses. were high bands. We placed them into our local Ms Peck: I am Jo Peck, Head of Nursing for nearby nursing homes where they have very good Medicine at Lewisham NHS Trust. care, and their dementia has been treated Dr Morris: I am Dr Jackie Morris. I am a jobbing accordingly. They are now improving substantially, consultant geriatrician, and deputy chairman of the and we have now gone in and re-banded those policy group at the British Geriatrics Society. patients and given less finance to the nursing home Mr Green: I am Martin Green, Chief Executive of to look after them, which has a massive detrimental the English Community Care Association, and a eVect both upon the individuals themselves trustee of Age Concern England. potentially but also on the business of the nursing home to try and maintain the same level of standards Q129 Chairman: Can you say a little bit about the which they wish to have. That is the main issue as far Association, Mr Green? as I am concerned. With the policy we now have, we Mr Green: We are the largest represented body for have no alternative but to use it as a perverse system; the community care sector in England and we have that if people do oVer over and above what people about 2,000 residential homes, which represent generally get, and people do improve and about 110,000 beds in membership. Our rehabilitate, we go in there and disinvest and remove membership goes right across the board, so we have the awards that we have made to the homes. charitable and voluntary sector providers; we have large corporates and we have quite a lot of individual Q132 Chairman: The whole system basically is small home-owners. working against rehabilitation and helping people, moving them towards independence in some Q130 Chairman: Would you include members of the respects. National Care Homes Association, or would they be Mr Pye: Absolutely, and like a lot of initiatives that separately organised from you? have come out quite recently it is a reaction to an Mr Green: That is a separate organisation, although issue and a problem. The reaction to the long-term we do have some cross-over members and some commissions report was, “we will fund nursing people are members of several umbrella bodies. care”. That was patently obviously not going to happen, and we are now not funding nursing care, Q131 Chairman: Can I thank you all for we are funding a proportion of nursing care. That contributing to our inquiry, and for your evidence came along as a reaction to the long-term we are most grateful. Mr Pye, I recall, going back commission. It also did not take into account the some years, when community care arrangements policy we already had in place for continuing health evolved from 1981 where people could go into care care, and the two sides have never married up. I was or nursing homes and get a top-up from the DSS listening to previous speakers about the system towards the cost. The argument was that that combinations and the relationship between the incentivised people to enter institutional care who RNCC and continuing healthcare. It was never frequently did not need to be in there, because it was thought about when RNCC came out, and we have easier to get care in a home than support and care to ended up with two policies and two procedures remain in your own home from the state. In your matching in everything including the words, which Y evidence you state that the registered nursing care places a great di culty on us within the nursing contribution framework rewards dependency and sector and certainly within PCTs in trying to fails to provide any incentives for recovery or disseminate and make decisions on who funds and rehabilitation. How do you think this perverse who does not. incentive might be tackled? Mr Pye: I think it is a perverse incentive, and I like Q133 Chairman: You have argued that the changes yourself, Chairman, have been around the Health to continuing healthcare criteria will not resolve Service a long time, and I was party in the early 80s wider problems of access to healthcare “unless there and 1990s when community care came out. When is a far greater agreement about what constitutes the RNCC first came into being it laid down what we health care and what constitutes nursing care”. That 3038591016 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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10 March 2005 Mr John Pye, Mr Martin Green, Dr Jackie Morris and Ms Jo Peck is at the heart of what we have been talking about all else gives the same care, it is not. How should we be morning. What do you mean by this? What do you recommending that this is altered, if it is altered, feel are the implications for patients who practise when it is used for the determination of registered and how might we resolve the issue? nursing care contribution? Mr Pye: I was kind of hoping that was your first Mr Pye: It is crucial we understand what we mean question this morning, Chairman, to see if we could by “nursing care”. As a couple of previous speakers identify what was health and what was social care. I clearly said, they provide quite a high level of have been in the Health Service 37 years and I am no nursing care to their loved ones and their families closer to finding the answers to what is health and and friends. The vast majority of their care is social care. That is a perversity we have in dealing provided by the mother and father. They carry out with probably our most dependent population. tracheostomy changes; they carry out ventilatory These people require continuing care. Whether it is procedures on their own children. It does not stop continuing healthcare or continuing social care is a becoming a nursing task simply because the carers bit of a red herring really. These are individuals who do it, but they do so under the guidance, supervision previously would have been in a long-stay hospital and training of the qualified nurses. It does not stop under the guidance and supervision of doctors, becoming a nursing task. The 2001 definitions of consultants and specialist staV. We no longer have nursing care included those tasks delegated and that provision for them. We put them into the supervised by nurses; however, when it comes to the independent sector, and very good as it is, it detaches funding issues around that care it ceases to be. The them from the National Health Service, and that is continuing health care and the RNCC clearly specify inherently what we have got. We have our most it is the work carried out by registered nurses. If you dependent individuals in the care of non-NHS staV, are not a registered nurse, you cannot carry out with little or relatively small amounts of support and nursing care. guidance given to those individuals. You suggested we move the demarcation line between health and Q136 Dr Taylor: So we do come down to what our social care, and I think we need to do that. We need previous witnesses said; that if it is carried out by a to look at people holistically and see what their nurse, it is nursing care. needs and care needs are. Mr Pye: Yes. If it—

Q134 Chairman: You also need to have a holistic Q137 Dr Taylor: If it is the same duties carried out professional, and the more I stick around in this by a care assistant or a carer, completely unqualified, area, the more I think the future professional roles it is not. will be markedly diVerent from what we have now Mr Pye: Sure. I guess all care provided by a nurse probably. Doug Naysmith and I have been serving does not necessarily need to be nursing care. on a committee evaluating the Draft Mental Health Bill, and of course the proposal in that Bill is to move Q138 Dr Taylor: Any help from the British away from the approved social worker role in Geriatric Society? sectioning people to the approved mental health Dr Morris: I have always had a problem with this. I professional because there is a recognition of people was at a meeting talking about dementia and the working much more closely together, and in a sense needs of older people with dementia the other day, we are moving towards one professional. Do you see and we have major concerns that the most frail older that as a means of responding to some of the people are given over to the care of the least trained demarcation problems we have got over and above and the least qualified to deliver that care. If you the funding issues, but the actual practice of people. were talking about people with cancer, we would not What is your view as to what that future professional be saying this was acceptable, and I think there is a might be? perverse incentive to give people the cheapest care Mr Pye: That is crucial too. It has happened over a and the most untrained care. That is not saying that long period of time. I was a community nurse in in some circumstances it is not very good, and I have Liverpool way back in the 80s and 90s where we did V spent lots of time visiting and supporting care merge the carers, the health and social care sta , homes, and they deliver amazing care and often in a because we had those disputes about who gives eye much better environment than the traditional long- drops, who washes hair and their feet, and all those stay hospitals. However, I think we have thrown the issues. We created a generic worker at that time, and baby out with the bath water. We have documented they are spread round the National Health Service, in our statement that we think it is the responsibility the social services now anyway, particularly around of the NHS to earmark and dedicate a specifically the elderly. The only way forward is to come trained group of staV of specialists to support this together and provide a generic workforce for the vulnerable group of people. As has already been elderly with the specialist people involved in their expressed so frequently this morning, it is very care as well. Continuing health care gives an diYcult to tell who is NHS continuing care and who opportunity now towards the creation of that. is not. Older people in nursing homes and care homes are very major users—and this has not been Q135 Dr Taylor: Can we explore definitions a little said—of the acute sector, because often their health further, and it is really the definition of “nursing needs have not been identified early enough and care”. We have heard from our previous group that sorted out early enough; so this is a problem. The if a nurse gives it, it is nursing care, and if somebody other thing is that the British Geriatric Society 3038591016 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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10 March 2005 Mr John Pye, Mr Martin Green, Dr Jackie Morris and Ms Jo Peck would like you to appreciate what is a happen regularly by general practitioners who can comprehensive geriatric assessment. I have been identify people who are ready for a geriatric looking up to make sure that I have the right terms, assessment. but it is very important for everybody to appreciate Dr Morris: Yes. It should be a dynamic— that there needs to be a co-ordinated approach to an Dr Naysmith: So given the number, it would require older person, where a team of professionals assess an a huge increase in the number of geriatricians before older person’s health, medical, emotional, cognitive it could even become feasible. and functional needs, to identify reversible problems, to review their medication and allow that Q143 Dr Taylor: Is it not the comprehensive patient and individual to achieve their maximum geriatric assessment part of the single assessment potential. This process has been proven to work. It process? does not necessarily reduce mortality but it reduces Dr Morris: It is supposed to be. institutionalisation and improves outcomes. We think it is very important that specialists are Q144 Dr Taylor: You are saying it just does not involved in this process. Often in hospital, the happen. assessment process leading to continuing care or Dr Morris: It does in some places and does not—it nursing home care does not necessarily involve a is a postcode lottery. specialist geriatrician. As has been described, there are major problems with how assessment prior to placement and continuing care is done, and poor Q145 Dr Naysmith: We were told in an earlier documentation. We believe the system should very session there would be a social worker there, a nurse much involve the patient and the carer and that there and someone from the PCT. should be good documentation. We also think that Dr Morris: Yes. In areas I have been in touch with you cannot just do one comprehensive assessment; recently, some people have panels involving a that assessment and review—there needs to be a clinician, which review the paperwork. Some people dynamic process. You need to assess people, and do not have panels. So even in small areas of London then if the decision is made—and you need to make and outside there is a tremendous variation in how sure they have achieved their maximum goals and this is performed. The other thing is that we welcome potential—you need to take into account the the NHS improvement plan for managing long-term complexity of their needs and the relationship conditions, but we would suggest that there is a need between disease, impairment disability and for a case management process. Geriatricians handicap. I hope I am being clear. cannot do it all, as you said, but we need a case management system to work with the nurses and the Q139 Chairman: You presumably accept the point primary care trusts, to set up a system whereby that Mr Pye made, that your assessment process vulnerable older people can be tracked through, to could have a detrimental eVect on the funding identify reversible problems, to make sure they can circumstances of the individual patients. access acute care when appropriate and access Dr Morris: Yes. rehabilitation when appropriate, and for their medications to be reviewed. Mr Green: Dr Morris has mentioned lots of issues Q140 Chairman: Have you experienced that? which certainly from the independent sector I want Dr Morris: There is a perverse incentive to discharge to pick up on. She mentioned the way in which people before they have reached their maximum assessment was carried out, and particularly that potential. I have always practised health care such there were other factors around assessment, and that I would like each individual to really achieve often they were about whether or not there was a their maximum potential, and that is our ethos. On crisis in beds rather than whether there was patient the other hand, if you are short of beds and there is need. I also think there are some really big issues a flu crisis and there are queues in the medical about the continuation of medical support when admissions unit and A&E departments, you might people are discharged to either a nursing home or a want to precipitate the early discharge of somebody care home. Actually, the ability for that care home who is not fit for discharge. and those medical staV and care staV to be able to function appropriately is often about having a clear Q141 Dr Naysmith: I would have thought very small understanding of what the medical need is and also numbers of people get the proper geriatric some ongoing supervision of the case, because as Dr assessment that you are talking about. Morris said, cases change and people rehabilitate; Dr Morris: I would like to put this question back to they develop and change in terms of their you. I think that we need to know. We do not know. dependency. We need a better interface between the I would suggest that we need to ask you to audit how acute services and those in the nursing home services comprehensive geriatric assessments are carried out so that people can be really clear that actually we are in this country, because it is a very diYcult thing for all about a resource that is there for the patient need. us to do but it could be part of the national That is one of the things we have lost. When people framework. get discharged from the acute sector, the Health Service often, particularly when they go into a care Q142 Dr Naysmith: You are saying that this should home or nursing home, think, “that is our job happen, and it should not just happen when people finished”. Actually, it should be about continuation are going for assessment for care; it should maybe of care for the patient right across the board. The 3038591016 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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10 March 2005 Mr John Pye, Mr Martin Green, Dr Jackie Morris and Ms Jo Peck other thing I wanted to pick up on was something long-term planning approach. Too often we might Mrs Pointon said. The definer of whether or not it is say that we need to change the structure, but medical care or whether it is a social care should not underlying where the structure is are some issues be who delivers it; you do not need to have a nursing about long-term planning and workforce planning qualification, but you need some ongoing support particularly. If your Committee does anything, it from somebody who might have a nursing could also highlight some of those long-term qualification. There are moves towards that, and our planning issues as well as some of the “where we are colleague from the RCNN said that, in some other now” issues and “where we would like to be issues”. areas of care, for example in children’s care. You Dr Morris: We emphasised in our report that in a have a situation where people are doing quite high- recent national study published in 2001, they found level medical interventions but they are doing them that charges were made in 30% of homes for because they are being well supported by their physiotherapy and 39% of homes for speech and community clinician. That does not happen so much language therapy, so there is a problem around when people are in residential care, and we need a people accessing appropriate therapy. Our clearer interface between the role of the acute recommendations in the Royal College of services, the role of the community services and the Physicians, whom we are also representing, in a role of residential services. We need to have that report we did in 2000 was that we would suggest the much more clearly defined, and we also need to look introduction of a more multi-disciplinary approach at how that impacts on commissioning. We talk a lot should be facilitated across the board in homes to about the outcomes and about patient need. We do support case managers. As well as that, I think you not see a lot of intelligent commissioning, the need a clinical governance system, and I would commissions for outcomes. In terms of the way in support your suggestion, which looks at outcomes, which we need to have commissioning, it needs to be including death and mortality. I would be very really focused on outcomes. We need to make sure interested to know whether there is any information the incentives are about enhancing people’s about outcomes from the continuing care panels independence. So a lot of that good work that goes about what happens to people, about death rates, on in the residential sector, either nursing homes or readmission to hospital and so on, about the panels care homes, that rehabilitate people and give them around the country and the regional variations. more independence at the moment is not validated. That would be very interesting and would help us. Often that is because people commission a process of care based on current medical position rather than Q149 Dr Taylor: Can I go back to the assessment of saying “actually the medical assessment says the the patient in hospital for NHS continuing care, potential of the patient is X, and if we commission particularly going to Ms Peck, to tie it down and give intelligently and flexibly, if we get to a point where us the detail. Who does it? What are their job titles they are increased in independence, we need to have at the moment, when you are putting somebody incentives in the system to secure that”. through this assessment? Ms Peck: It is still in the multi-disciplinary approach Q146 Chairman: The incentives are completely certainly in our trust. On that team would be a nurse against that from what we have been told. from the ward, who has obviously been caring for Mr Green: Absolutely they are. the patient; and they would contribute to the nursing side of the assessment. Q147 Chairman: It is ridiculous. Mr Green: Absolutely, because the incentive is to Q150 Dr Taylor: Would that be a fairly senior nurse keep the patient at the higher dependency level. The on the ward? other issue is that often there are not proper re- Ms Peck: It could be anybody. We try and get assessments. Yearly re-assessments in cases of somebody who knows the patient the best, because people who are very frail are not adequate, because obviously then they can go for the most detailed they change in their conditions. report. When the case goes to the panel—and we have a panel in our patch—the quality of the Q148 Mr Bradley: You mentioned the tripartite assessment is vital. Often a lot of cases get deferred relationship between the acute, the community and at the panel stage because the quality of the the nursing home or potential home. In my assessment is not good enough. experience, taking physiotherapy, if you are prepared to take the person back to the hospital they Q151 Dr Taylor: So it would be a staV nurse or a might get a physiotherapy service. Relying on the sister, if you still call them that. community to come into the home to do that same Ms Peck: Yes, we do—just. Then there would be, thing is extremely limited and patchy, and unless you depending on the patient, physiotherapy, do that, then that rehabilitation stops the moment occupational therapy assessment, depending on they come out of the acute setting. what the diagnosis of the patient is. Mr Green: Absolutely. We need to analyse whether or not those are structural impediments based on the Q152 Dr Taylor: So nurse, OT and/or physio. way in which services work at the moment or Ms Peck: Then somebody from social services whether the structural impediments are because of obviously to look at the current home situation of workforce issues and lack of trained personnel. I the patient, and then a doctor would also give their think it would be useful to unpick those issues for the assessment. 3038591016 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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Q153 Dr Taylor: Who would the doctor be if not Q161 Dr Taylor: The multi-disciplinary team that necessarily a geriatrician? has done the assessment would then report to this Ms Peck: It would be a physician, so a medical panel. consultant. Ms Peck: Yes, they submit the paperwork and then the panel make the decision about where the most Q154 Dr Taylor: Is that good enough? appropriate destination for the patient would be. Dr Morris: I would question, is it always the consultant? I would wonder whether the consultant Q162 Chairman: Is this a panel similar to the one we may designate it to a more junior member of staV. had described to us in the earlier session? Having sat on panels for many years, the people who Ms Peck: I assume so, yes. filled the forms in was variable. I think to be fair it would often be the registrar. Q163 Dr Taylor: Has the introduction of the single assessment process made any diVerence? Q155 Dr Naysmith: Just as it is the registrar or senior Ms Peck: No, because we are not using the single houseman who sees patients at a clinic. assessment process across the board yet. Actually, Dr Morris: Yes. we have just had a case that went to panel this week in Lewisham that had the single assessment, and it Q156 Dr Naysmith: Lots of people think they are was deferred because the assessment was not deemed seeing a consultant but in fact they are not. It is the appropriate; so they have now got to go back and re- same thing. assess under continuing care. Dr Morris: Yes. Q164 Dr Taylor: Turning to the registered nursing Q157 Dr Taylor: Should one of our care contribution, is assessment for this viewed as a recommendations be that it should be at sort of ladder, that you start at the lowest and work consultant level? up; or do you start at the top and work down? How Dr Morris: I would think—consultant level filling does it work? the form in—as a consultant geriatrician filling the Ms Peck: I am not sure. form in? Mr Pye: I do not think it is either/or; I think it is based upon the information provided to the nurse Q158 Dr Taylor: It is more and more likely to be undertaking the RNCC, who looks at the criteria because there are not enough juniors about now, within each band. are there? Ms Peck: We normally have a consultant that signs Q165 Dr Taylor: Would you agree with previous the form, but whether the consultant physically filled witnesses that there is very little distinction between in the form—they would normally sign it so their the highest band and continuing care? signature is on the form. Mr Pye: The wording is the same—“complexity; intensity”—they are both within the high band of Q159 Jim Dowd: Would that not serve simply to continuing healthcare. Again, it is down to slow the whole process down? interpretation. Dr Morris: I should not think so. Mr Green: My issue here is not about who signs the Q166 Dr Taylor: Is there a space for a very closely form and what their particular medical status is; it is defined group in between those, or do you think the about clarifying what is on the form and how much merge is so inevitable that they ought to be regarded inquisition has been gone into in terms of whether or as one? not the patient’s needs have been taken account of. Mr Pye: I think they practically are one. There are I would not want to go down the road of necessarily some real diYculties in identifying a diVerence saying it has to be a consultant. It has to be between the two. Again, it is down to local somebody who has gone through a process, and interpretation at a specific time. that again raises the issue about clarity and standardisation in the assessment process. We need Q167 Dr Taylor: Would that go for all of you? to have that so that if you had somebody who is Mr Green: I certainly do not think there is much appropriately trained, who knew the patient and diVerence between the two, and I think it is down to understood what we were trying to get at from the interpretation. I think there are lots of other factors assessment, then it would not matter whether they that come into play here which are not mentioned, were a consultant. I do not try to do Dr Morris out which are sometimes about the amounts of people of a job, but it is just about being clear. you have at any particular time needing that particular resource. Nobody comes out and says Q160 Dr Taylor: So we have the participants. Who that but that is the reality. actually makes the decision about the health and Dr Morris: No, the reality is that colleagues of mine social care components? How is that decision have said, “we are keeping this patient in because we arrived at? Who makes it? think they need hospital care and we are not putting Ms Peck: At Lewisham it is made at a panel meeting, them up to the panel, and they are very frail and very and the panel is made up of members from the PCT, vulnerable and we think they need to be in hospital”. social care and health and the acute trust; and they They have not gone through any panel; the ratify. consultant has made a decision that that individual 3038591016 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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10 March 2005 Mr John Pye, Mr Martin Green, Dr Jackie Morris and Ms Jo Peck needs a lot of care. Another consultant however Ms Peck: Yes, up to 20 a week. might say, “I am sorry, we have got to have the beds, and put them up before the continuing care panel.” Q178 Dr Naysmith: Mr Green, is there any evidence that when a home takes residents from more than Q168 Dr Taylor: There is a limitation on resources one primary care trust area there is likely to be an available outside. inconsistency of assessment? Dr Morris: Yes. Mr Green: Very definitely. It is very interesting when we talk about things like assessment processes, Q169 Jim Dowd: On assessment, do you talk to the which are supposed to be based on individual need, relatives? and then we see block contracting from local Ms Peck: Yes. They are involved in that process, authorities and health trusts about the delivery of a almost from the very beginning. service. If you were thinking about this in relation to individual needs and you were going through an assessment process which said a person has given Q170 Jim Dowd: They are involved when you said needs, you would then look at your resource four people together, making reference to a panel. package appropriate to those needs and a placement At which stage are they involved? appropriate to those needs. So there is great Ms Peck: They are certainly very involved with the variability in the system, and certainly in relation to social services component of it, and they will how the individual interpretation happens in contribute to the nursing. diVerent places. That is where we have not got much standardisation, and in fact we have postcode Q171 Jim Dowd: But are they actually present when lotteries coming in through the back door. the meeting takes place, making the decisions? Ms Peck: No, because each individual does their Q179 Dr Naysmith: That must give rise to problems assessment on their own, and the form is completed where you have some patients in some of your but each person fills in their relevant bit. Sometimes members’ care homes, where some people are being it will be done at the team meeting, or elements of the well funded and others hardly being funded at all, form, but sometimes it will be filled in by separate but with the same needs. individuals on separate occasions. Mr Green: Absolutely. As the demographics change, and particularly as there are more people with very Q172 Jim Dowd: Do the relatives see the report high dependencies because of Alzheimer’s disease before it goes to the panel? and dementias, there will be even more pressure on Ms Peck: Not normally, no, not in acute trust. beds. The inconsistencies inherent in the processes Mr Pye: It is worth saying, Chairman, that the around assessment will then lead to some people panels do not operate in every area. saying “no, I am not going to have your patient in this establishment because somebody else does a Q173 Chairman: I picked that up from Mr Hill better assessment process and is prepared to pay because I had a good idea it did not happen in my more for more intensive care”. area. I had never heard of it. Mr Pye: No, they do not have panels; they have Q180 Dr Naysmith: Does that happen? individuals who make decisions. Mr Green: I will not say it is happening now, but it will happen in the future. It probably is happening. Q174 Chairman: Does it in your area? I cannot quantify that, but I do not think it is Mr Pye: We do not have panels in Cheshire. happening to any great extent. I do think it may happen in the future, and particularly as we are in a situation where we know the demographics are Q175 Chairman: Is it a north/south kind of thing going to change. We know there will be increased because we get the picture that they seem common numbers of people with very high dependency levels, in London. some of which may be able to be supported in Dr Morris: It is not common in all areas. supported housing or through community care packages, but some of which undoubtedly will need Q176 Jim Dowd: Lewisham, which I know very well, residential or nursing care. If we do not get our is a relatively small DGA, about 450 beds. On planning structures right now, we will have a great average how many assessments are you doing in a shrinkage in that available resource and greater month? competition for those beds. Ms Peck: The panel normally hears between six and 10 cases each time it meets, and it meets twice a week, Q181 Dr Naysmith: It must follow then that there on a Monday and a Thursday, but that is not just will be some residents who have been assessed for a patients in Lewisham Hospital; that is patients level of care that is below what you would anticipate already in care homes or patients in mental health they would need when they are in your members’ trusts, or patients who are in hospitals outside the homes. borough but are Lewisham residents. Mr Green: Absolutely. The problem is that often as well assessments are, whatever anybody says, Q177 Jim Dowd: So it is about 20 a week, or up to resource-bound. For example, if you had little in 20 a week. your budget then you would spend much longer 3038591016 Page Type [E] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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10 March 2005 Mr John Pye, Mr Martin Green, Dr Jackie Morris and Ms Jo Peck justifying your lower level band because you had to fact that people have not got clear assessment justify it to yourself and others, whereas if there is criteria which is a national one does not help. Of more budget you know you might be more flexible. course, you also get people who cross-reference There needs to be far more re-assessment on a around their own families. For example, the mother- regular basis, and that needs to be multi-disciplinary in-law has one assessment, and they think they are in re-assessment because the reality is that the a much higher care band, but they get probably more dependency levels are such that often people are money than somebody else who they perceive as placed in their end-of-life placements, and at that being in a lower care band; then they get diVerential period in a patient’s journey there is a lot of change, approaches. That does not help the process and it and sometimes quite rapid change. We need a leaves people, particularly carers and older people commissioning process and a resourcing process themselves quite dissatisfied. It also leaves providers that can build flexibility into the system so that dissatisfied because they have to deal with the people can have their care needs sometimes turned understandable upset that that causes. up but conversely sometimes turned down. There is Dr Morris: I totally agree with everything Martin a lack of flexibility at the moment and lack of re- said. My concern is that previously in the panels assessment. there was a perverse incentive for the Health Service to get the social service departments to pay for Q182 Dr Naysmith: You may have heard me refer to everything. This has expanded into the fact that the a couple of cases I have where people were not acute sector wants to shift everything on to the PCT properly assessed but were admitted to residential and makes it more the responsibility of the PCT. homes on a contract, and when they were There is some evidence that some people have been subsequently assessed properly the money that came imaginative and set up systems whereby the acute just resulted in the home putting the fee up so that it sector and the PCT work much more collaboratively was of no benefit to the individual at all. Can you tell to improve the system of delivery to older people. On us how this can happen and what your members’ building on this, one of the things that has been oYcial attitude to this is, if you have one? mentioned as part of assessment and as part of my Mr Green: I think it happens because of under- experience is the incredibly poor documentation funding at the initial stage and because the way in that homes receive when patients arrive from which there is a monopoly commissioning approach hospital. They may have got a very complex via either health trusts or local authorities means assessment, but they will not have got their previous that homes cannot survive without those contracts medical records. They will not have got their to fill the beds. So they are forced to either make self- hospital records, their GP’s records. They may if funders pay more in order to cover gaps, and then they are lucky occasionally receive a discharge when an opportunity arises because there has been a summary, because the discharge summary will tend re-assessment of the need—and what has happened to go to their previous GP. The homes are left with is the need has not changed but the assessment and a new patient about whom they know nothing, and the acknowledgment of the resources required has they have to then set up a comprehensive system of changed—so the individual would expect to benefit care delivery. Building on that, when I have been from that, but the reality is that the care needs are into the homes—and I think it is improving—you being now more properly assessed in terms of their often get a system where the GP’s records are in the resources. That leads to a very unsatisfactory GP’s surgery; the care home plans are in the care position for everyone. home; and the medication lists are somewhere else. There is not a holistic approach to providing care, Q183 Dr Naysmith: You can understand why people and this needs to be part of assessment and part of would be very unhappy about this. the review assessment, the bringing together of— Mr Green: Absolutely. Q186 Dr Naysmith: That is clearly something we Q184 Dr Naysmith: Because the letter comes to them need to turn our attention to. To turn it round, in the saying “you are getting so much more money from previous session we were talking about the the Government” and it is— retrospective review, when some people were Mr Green: Absolutely, and everybody is dissatisfied complaining about the state of records in some probably with the exception of people like the care homes. commissioners, because nobody ever comes into Mr Green: Absolutely. There is an issue about direct contact with them, so they are not the people records generally, and it is a fairly easy issue to in the firing line, and this was about probably address as long as we get some clarity about what is inappropriate assessment at the start we need to get required and we build it into a standards regime. this assessment process really clear so that there is a One of the disappointments is that some of these robust and accountable approach for both the care things should be addressed by things like electronic needs but also what those care needs cost. patient records, which is costing millions and millions of pounds but probably will not address the Q185 Dr Naysmith: How often does it happen that very points that Dr Morris mentioned. So we have you get this late assessment? an opportunity here which has been missed. Mr Green: I think it is happening less often now, but certainly in the past it happened quite a bit. Part of Q187 Chairman: We are on the case. You know that, the problem is the variability of assessment and the do you not? We have been for some time. 3038591016 Page Type [O] 27-04-05 23:20:24 Pag Table: COENEW PPSysB Unit: PAG1

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10 March 2005 Mr John Pye, Mr Martin Green, Dr Jackie Morris and Ms Jo Peck

Mr Green: There are some issues about records, but to that benchmark rather than just letting it be a it is very diYcult as well because there is not any free-for-all, which it is potentially in my view at the clarity or standardisation about what records need moment. to keep, and also— Q190 Dr Taylor: In a previous inquiry, the delayed discharges inquiry, we tentatively explored the Q188 Chairman: And how long they keep them for. possibility of specialist GPs or consultant Mr Green: Absolutely. Dr Morris’s point is very geriatricians being attached to care homes. Is there important, that people are sometimes having to start any mileage in that? from scratch, not knowing the history, when they get Dr Morris: We would support that. There is an a patient coming through to their establishments. example of this in the north, in Durham, where they That is not helpful because you start not knowing have appointed a GP practice to take over a group what the history was. So even if you keep the records of care homes. They have also got nurse specialists for 10 years or do them in the best way, you have to provide a case management system to back this up. We are exploring this in Paddington where I probably got 70 years of patient records that you did work at the moment. But those GPs have had a not get to before the patient was admitted to your comprehensive training programme, the GPs with a establishment, so there are some big issues there. special interest in older people. I think we now call Dr Morris: I have a suggestion, that you empower them practitioners with a special interest. the patient and the carer. I suggest a system whereby the patient carries their own record. Q191 Dr Taylor: Are there many community geriatricians? I know there are very few. Dr Morris: They are a developing species. There are Q189 Jim Dowd: Mr Green used the very loaded community geriatricians and they are a developing term “postcode lottery”. How do you reconcile your group. What the British Geriatric Society desire for greater uniformity with devolved local recommends is that the service that the departments priority-setting by PCTs? of geriatric medicine provide need to be Mr Green: It is a real dilemma because you need to comprehensive. Within that comprehensive service have local priority-setting, but that needs to be there would need to be a system of community about real priorities, not about budget-led priorities. geriatrics, which includes attachments for GPs and For example, one of the issues I have about local nurses to be trained up, perhaps to teach in nursing priority-setting is the accountability of what those homes and so on; so it is about providing a priorities are and how you establish which priorities comprehensive service which includes community are going to be for area X, and why they are diVerent geriatric medicine. in area Y. I would not have a problem in terms of Mr Green: We would support that as well, and we would certainly support it because it may stop the the local priority-setting if there was some practice that happens at the moment that some care accountability and people knew why particular homes and nursing homes have to pay to get GP priorities were for particular areas. The other thing services, which is an absolute scandal, because those we need to understand is that local priorities should establishments are supposed to be in the community, be responding to local need, but that does not mean and the residents should be able to access every other that some people should be getting better quality community service. services than others, so there has to be a position Chairman: Thank you for a very useful session. I am where you say “this is our benchmark of what people sorry we have kept you so long, but that indicates should be receiving in terms of the quality of the that we have had a very interesting session. Thank service” and then you build in the local priorities on you very much. 3012251016 Page Type [SE] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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Thursday 17 March 2005

Members present:

Mr David HinchliVe, in the Chair

Mr David Amess Mr Jim Dowd John Austin Dr Doug Naysmith Mr Keith Bradley Dr Richard Taylor Mr Simon Burns

Memorandum by the Health Service Ombudsman for England (CC 23) Background 1. The long term NHS funding of patients (usually elderly and disabled, often, but not exclusively in care homes with nursing) is usually called “continuing care”, and results in all social and health care needs being paid for by the NHS, without any form of means testing. 2. In my special report to Parliament in February 2003 (NHS Funding for Long Term Care, HC399) I recommended that strategic health authorities and primary care trusts should (in summary): — review the criteria used by their predecessor bodies, and the way those criteria were applied, since 1996, taking into account the Coughlan judgment, Department of Health guidance and my findings; and — make eVorts to remedy any consequent financial injustice to patients, where the criteria, or the way they were applied, were not clearly appropriate or fair. I also recommended that the Department of Health should: — consider how they can support and monitor the performance of authorities and primary care trusts in this work; — review and clarify the national guidance on eligibility for continuing NHS health care and include definitions of the terms used; — consider being more proactive in checking that criteria used in the future follow that guidance; — consider how to link assessment of eligibility for continuing NHS health care into the single assessment process and support the development of reliable assessment methods. 3. The Department agreed to all but one of the recommendations made in that report. That recommendation was that the Department should review their guidance to strategic health authorities on eligibility for continuing care. 4. According to the Department’s figures, nearly 12,000 retrospective reviews have been carried out, with 20% of these resulting in partial or total NHS funding for the patient. However, in my Annual Report for 2003–04 (HC 703) I expressed disappointment that there had been considerable delays in carrying out the reviews and that, despite the development of new eligibility criteria for the 28 strategic health authorities, I still had concerns which I planned to raise with the Parliamentary Under Secretary for Community, Dr Ladyman. I also said that I intended to publish a further report to Parliament later in 2004.

Further Report 5. In my further report, (NHS Funding for Long Term Care: Follow up report HC144 16 December 2004) I reported that, although there had been considerable eVort locally to retrospectively review cases fairly and robustly, there had been considerable problems. Complaints to me revealed: — significant delays in completing retrospective reviews and a lack of capacity to deal with the number of cases; —diYculties of interpretation of eligibility criteria (and the Department of Health’s 2001 guidance on which those criteria were based) to decide who should qualify for full funding; — confusion about the distinction between continuing care full funding and “free” nursing care— particularly at the higher band; — flaws, often systemic, in the way retrospective reviews were carried out; and — delays in making restitution payments to those found eligible for continuing care full funding. 6. In more than half of the cases my OYce examined we found that the assessments had not been carried out properly. The problems included poor quality clinical input to both assessment and decision making, inadequate documentation, failure to consider changes in a patient’s health care needs over time, and lack of involvement of, and poor communication with, patients, carers and relatives. 3012251001 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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7. Our conclusion was that, while there had been a lot of hard work at local level with examples of good practice, and the Department of Health had instigated some improvements in respect of ‘new’ continuing care cases, these developments fell short of the level of guidance and support that was needed by healthcare professionals in this diYcult area. We recommended that the Department of Health needed to lead further work in six key areas by: — establishing clear, national, minimum eligibility criteria which are understandable to health professionals and patients and carers alike; — developing a set of accredited assessment tools and good practice guidance to support the criteria; — supporting training and development to expand local capacity and ensure that new continuing care cases are assessed and decided properly and promptly; — clarifying standards for record keeping and documentation both by health care providers and those involved in the review process; — seeking assurance that the retrospective reviews have covered all those who might be aVected; and — monitoring the situation in relation to retrospective reviews and using the lessons learned to inform the handling of continuing care assessments in the future. 8. I met Dr Ladyman to express my concerns and shared a copy of my draft report with him. I was pleased when on 9 December 2004 he announced to Parliament that he had commissioned a “new national framework for the assessment for fully funded NHS continuing care”. 9. I publicly welcomed this initiative and was encouraged when Dr Ladyman wrote to me saying that he believed his statement went beyond most of the recommendations in my report and that his oYcials intended to work closely with mine so that the national framework could benefit from our experience.

Further Developments and Subsequent Events 10. To this end, on 17 December 2004 my oYcials spoke at a special meeting (called for and hosted by the Department of Health) to brief strategic health authorities continuing care leads. We now plan to meet with strategic health authorities to discuss the problems that we have identified from our caseload of complaints. The purpose of these meetings is twofold: — First, to make sure that relatives and carers who complain to us with justification about flawed retrospective review processes and consequent unsafe decisions have their cases properly reviewed or reassessed in a fair and transparent way. — Secondly, to use these subsequent robust reviews as a way of encouraging strategic health authorities and their trusts continuously to improve their standards in future continuing care cases. This should ensure that the majority of disputes are properly and fairly dealt with and should obviate the need for complainants to bring large numbers of justified complaints to my OYce. 11. To date these visits have been generally welcomed by strategic health authorities and have proved very useful. They have provided a forum for frank and open discussions and we hope that they will help the health authorities to develop an approach to continuing care that will ensure that past and future cases will be assessed quickly, fairly and robustly. OYcials from my OYce and the Department of Health have met to share these experiences and explore the principles that we see as essential to the national framework. We are also planning a further three-way meeting to include strategic health authorities’ continuing care leads. Further, at a meeting with the Department on 11 February 2005, it was confirmed to my oYcials that the new national framework would include national minimum eligibility criteria, backed by suitable assessment tools, guidance and Directions.

Other important issues 12. In addition, there are two further issues which in our view need to be considered by the Department. 13. First, the resolution of the widespread confusion and misunderstanding of the relationship between “free” nursing (particularly at the RNCC high band) and fully-funded continuing care. Following advice from Counsel, we wrote to the Department at the beginning of February 2005 to set out our understanding of the issues and to seek urgent clarification. We have an increasing number of complaints about this issue. Carers and relatives claim that, given the similarity of the wording used in both sets of criteria, those who have been found to qualify for high band free nursing must also meet the criteria for full funding. We are awaiting a reply from the Department. 14. Secondly, the other theme in current complaints to me is about redress, where it is accepted that funding was wrongly withheld. My principle is that the individual, or their estate, should be put back in the position they would have been in had the maladministration not occurred. I am currently considering a number of cases where the complainants appear to be able to substantiate claims that a house was sold, or a job given up, to care for someone, as a direct result of the failure to give continuing care funding at the appropriate time. I am also looking at the interest rate which is used by trusts when paying restitution, and 3012251001 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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at the appropriateness of botheration payments, where the handling of the complaint by the trust or the authority has been particularly poor. These issues are being taken forward with the Department, rather than at authority or trust level.

What should be in the National Framework? 15. From our experience, to produce a robust National Framework for continuing care, the Department needs to: — create clear, comprehensible, national eligibility criteria; — develop a nationally validated approach to the assessment and documentation of a patient’s health care needs to ensure fairness and consistency and enable reasonable and robust decisions to be made about eligibility for continuing care, which can stand up to challenge and scrutiny; — provide agreed definitions of criteria used to make decisions, such as “intensity”; and “complexity”, or, better still, find improved wording to replace them —perhaps through the use of plain English; — clarify the situation where health care is given by a non-NHS practitioner, such as a nursing home employee, private carer or relative; — review and make recommendations about what is an appropriate decision making body (panel) for eligibility decisions for NHS continuing care; — agree a national standard and a set of agreed competencies for NHS continuing care assessors; — set up nationally organised training for, and assessment of, NHS continuing care assessors; — initiate a thorough review and secure national agreement about the distinctive diVerences between “nursing care” and “personal, hygiene and social care” for the purposes of qualifying for NHS continuing care; — examine the relationships and diVerentials between NHS continuing care criteria and funded nursing care criteria and review similar phraseology within both; — review and clarify eligibility in relation to degenerative conditions which inevitably lead to death (eg Alzheimer’s Disease); and — establish a national communications strategy to help all sections of society understand the criteria for NHS funded continuing care. Conclusion 16. I very much welcome the Department of Health’s broad commitment to taking the lead in developing national criteria for NHS funding for continuing care and that this Committee is contributing to the development of this important area of public policy through its current Inquiry. I hope that the experience and expertise of my OYce in investigating problems with continuing care over many years will be welcomed not only as making an important contribution to the establishment of a robust, fair and open system which will earn the confidence of patients, carers and professionals alike, but also in drawing a line under the retrospective review exercise when I am satisfied that patients and carers have received reasonable funding decisions based on robust assessments. Ann Abraham 25 February 2005

Witnesses: Ms Trish Longdon, Deputy Ombudsman, and Mr Colin Houghton, Head of Continuing Care Team, examined.

Q192 Chairman: Good morning colleagues. May I in which, as you know, she has a very real interest— welcome you to this session of the Committee, and but, sadly, she had a prior engagement which particularly welcome our witnesses. Could I place on involved a large number of people that it would have record the Committee’s thanks to you both for been very diYcult for her to cancel. So, her coming before the Committee and for your apologies, and also she has asked me to say that if cooperation with our inquiry, noting that we have there is anything she can do subsequently to help, met informally and we appreciate the time you have she would very much like to. given the Committee on this issue. Would you mind Mr Houghton: Good morning. I am Colin briefly introducing yourselves to the Committee, Houghton, Head of the Ombudsman’s Continuing starting with you Ms Longdon. Care Team. Ms Longdon: I am Trish Longdon. I am the Deputy Parliamentary and Health Service Ombudsman. I should say, in introducing myself, that Ann Q193 Chairman: Thank you. I think it is worth Abraham would really have liked to have been here saying that I did speak to Ms Abraham and I herself—this is a very important issue and something understand the circumstances. We are grateful for 3012251002 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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17 March 2005 Ms Trish Longdon and Mr Colin Houghton her help in this inquiry. Could I begin by an opening Q196 Chairman: While I accept this is to some question along the lines I asked with the witnesses extent a holding file, that the issues are being last week. At the heart of this issue is something that looked at in more detail, do you get the impression has dogged our discussions on policy for many, from what they have said to you that the many years, which is how we establish the dividing procedures to which you referred just now will in line between health and social care and if there really fact take place? Are they taking action to direct is a dividing line. Do you have any thoughts on this? SHAs to ensure that action is taken along these In policy terms, what might we as politicians do to lines? Is there some directive that has gone out, do address an issue that really is at the heart of the we know? problem we are talking about today? Ms Longdon: In principle our understanding is that Ms Longdon: I think we are probably not best placed there is. Colin may have some details. to answer that question from the evidence that we Mr Houghton: I am very pleased with the reply have from the complaints that come to us, other than actually. It is very positive. It agrees with us on the perhaps to reinforce the point that actually the nature and the manner in which these two streams complainants who come to us come to us very of funding came about. They agree there is Y confused about the whole issue: confused about confusion and di culties interpreting these. We are what health care is; confused about the terms that hoping to meet with my counterparts in the are used; and confused about the distinctions that Department of Health next week, as soon as many people as providers make but which of course possible, to try to address this. We recognise that are meaningless to the users of those services. We there is the forward look for the National have a very large amount of evidence to demonstrate Framework, but obviously our concern with the that there is a real issue. In terms of solutions, I am Ombudsman at the moment is that we have a lot not sure we are well placed to suggest that. I am sure of complaints at the moment solely about this issue of having higher band. People are saying, “Look, there are others who are far better placed to suggest they should have continuing care. What is the how that might be addressed. diVerence?” I am looking forward to meeting very soon to try to work on this and to address this Q194 Chairman: You wrote to the Department issue, and to see how we go about ensuring that, recently—and I think it was Mr Houghton who as I understand it, the 15,000 to 20,000 higher band signed the letter—with regard to continuing care cases have been looked at properly: continuing care funding and registered nursing care contribution, first and then, if they are not eligible for continuing expressing concerns about the confusion between care, moving on to the RNCC bands. these two areas and free nursing care, especially at the higher band. I gather that you may have Q197 Chairman: In your letter there was reference received a reply to your letter. Is it possible for that to the RNCC being more restrictive within to be made available to the Committee? Or could National Health Service continuing care. Has there you indicate whether the concerns you have been a response from the Department on that expressed, which are quite strong concerns, have particular point? Or is that something you are been picked up in the reply from the Department? going to discuss with them? Ms Longdon: You obviously will have an Mr Houghton: I think that is something we are opportunity to talk to the Department directly. going to be discussing.

Q198 Mr Burns: I think I am right in saying that Q195 Chairman: Of course. the problems which led to you receiving complaints Ms Longdon: And I am sure they will want to started from 1996. Do you have a breakdown of answer for themselves. But, yes, we have had a the number of complaints you have had for, say reply, and the Department have said that they too 1996/7, and 1997/8, and 1998/9? Is there any way understand there is some ambiguity that they will of finding out when the most critical time was for want to address as part of the new National the most complaints? Framework. We are content with their statement Ms Longdon: No, we do not have that information. that it is actually diYcult to address the ambiguity, In fact, the issues that we looked at were looking and that it will take time to do that—although we backwards. Most of our complaints have come in would hope it will be done as quickly as possible— since the Ombudsman issued her report in but that it is clear that people should be assessed February 2003 drawing attention to this issue. for continuing care funding first before they are Before that, we did not have large numbers of assessed for the RNCC band. Certainly, from the complaints coming in, so we were not in a position complaints to us, that has not always happened, so, to identify the volume. I think everybody was in the meantime, while the clarification is going on, surprised by the volume of people who were the view the Department have expressed to us is aVected. that they would expect a continuing care assessment to take place before an RNCC Q199 Mr Burns: When the Ombudsman’s report assessment has taken place, so that the individual drew attention to a wider audience that there was and the family can be clear that they do not qualify a problem, presumably a lot of families would have for the full continuing care funding before they go thought, “Ah, that must have been a problem we on to look at the RNCC. suVered from in . . .”—whenever it was. When they 3012251002 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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17 March 2005 Ms Trish Longdon and Mr Colin Houghton started complaining, you would know about which Q202 Dr Taylor: Going on with the quality of the time period they were talking, because they would assessments, because this is something that really say, “Mother went into a home in 1996”—or 1997 concerns us: last week we heard that the criteria or whenever. Would you not have the statistics as from Strategic Health Authorities may be largely to when the problems were occurring? similar but that the interpretation of these at Trust Ms Longdon: When we got the really large number level is variable and really quite unsatisfactory. of complaints which have come to us since that That rather matches the statement in your review report—normally we do not have large numbers of to us, which is really quite damning, that: “In more complaints and we have received over 4,000 than half the cases my OYce examined we found complaints since then—in the first instance, that the assessments had not been carried out because of the Department’s response to the properly. The problems included poor quality Ombudsman’s report—which was to say that there clinical input to both assessment and decision- would be a retrospective review of those cases—we making, inadequate documentation, failure to passed the complaints we received to the Strategic consider changes in a patient’s health care needs Health Authorities and said, “You have over time, and lack of involvement of, and poor undertaken to review these properly.” Therefore we communication with, patients, carers and did not retain that information; we sent it to them. relatives.” That is awful. That is a totally damning That information is something you would probably statement of the way the process is going, and it need to look somewhere else for, I am afraid. fits, again, with witnesses last week who said that the system is just not working. What suggestions do you have? You say the services should Q200 Chairman: Do you also have any thoughts on be expanded—“expand local capacity”—and geographical location: where it is that you have obviously improve training. Can you help us to received substantial complaints from? One of the know how that expansion should be done? issues we talked about last week was that some Ms Longdon: If I may start by saying that it is a people seemed to be more aware of the issue by worrying picture. The report is there on the records various mechanisms. Easington Working Men’s to address that. But some people are doing much Club seemed to be one organisation that appeared better than others and therefore there is much good to assist people in that part of the world. The word practice from which to learn. Our suggestions in the got round. A serious point. Can you identify report are two-fold: (i) that you have to have clear, particular pockets of problems in certain parts of comprehensive criteria that everyone can the country from the information you have? understand—that is, professionals and users of a Ms Longdon: The information we have is partial. service—and (ii) that the tools that people are It is dependent upon a complaint being made to us, provided with to help them to do this well—and therefore we would not tend to have the whole some people are doing it well—are shared very picture. But we are dealing with complaints by publicly and clearly, so that we build on good Strategic Health Authorities in batches. We have practice and get people following that good some information about where we have the most practice. complaints and where we are taking those forward. I am not sure that we would be able to say there is Q203 Dr Taylor: I would love to know what you a causal link between that and local publicity. The understand by tools in this sort of circumstance. causal link might be between that and how satisfied Ms Longdon: I will hand you over to Colin for this. people have been with the process that they are Mr Houghton: These will be methods of assessing being put through. We can provide information. If someone’s health care needs against the criteria. I you want it, we could get it to you subsequently by know it is easier said than done, but, for example, SHA for the number of complaints we have focusing on such diYcult words as: “intensity” received. “complexity” and “unpredictability”—which are there in many eligibility criteria, but where not a lot of work has been done to try to pull those out Q201 Chairman: If you do not mind, that would be and examine them and see exactly what they could very helpful. The other issue that came up was that mean for national criteria. perhaps more middleclass people are aware of this than people who are less well informed. You Q204 Dr Taylor: Should it just be a table, a chart probably cannot draw any great conclusions from that people fill in? the geographical information, but it would be Mr Houghton: No, more than a tick-box one. We interesting to see it, so we would be grateful for have had experience of quite sophisticated that. assessment tools which, at the end of the day, fall Ms Longdon: Could I just add that in our report down to a scoring system, whereby you have to get we draw attention to the fact that anecdotally we above a certain number in a certain number of have some concerns about everybody who needed health care domains in order to qualify. I think it to know having been captured by the publicity. probably needs a more holistic approach, to stand Anecdotally, we would support the concern, and back and look at it, and not to decide, “That one we are seeking an assurance from the Department qualifies and that one does not.” We do not have that they have done what they felt appropriate to all the answers to this. I think a lot of work needs identify people. to be done on this. That is why we are so pleased 3012251002 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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17 March 2005 Ms Trish Longdon and Mr Colin Houghton that we are getting involved in looking forward to Ms Longdon: There are a number of areas of the National Framework, so that we can contribute training to which we have drawn attention in our to this. report. One is, overall, the fact that this is an area in which there was not a lot of knowledge and Q205 Dr Taylor: So the aim with the National expertise. Indeed, the work that has gone on over Framework would be that there is a single national the last few years has developed that hugely, but assessment tool that everybody should use. there is a lack of real understanding of these issues Mr Houghton: That is what we are proposing— at many local levels. So there is a general issue of with appropriate guidelines.1 capacity; there is a specific issue around certain of the elements of the assessment that need to be undertaken; and then there are other general issues, Q206 Dr Taylor: Going back to the quality of for example around communication, which are assessment, in some places you say it is really being very relevant to the way people understand what is done very well. Can you point to any group of staV going on. which is better at doing it, which it is essential should be involved? Are there any lessons from the Q210 Dr Taylor: Finally—and I do not really places where it is done well that we ought to understand this—how does the single assessment know about? process fit with your idea of a national Ms Longdon: The start is that this is a assessment tool? multidisciplinary assessment, and therefore you Mr Houghton: I think if the tool was to form part have to make sure you have involved in the of the single assessment process—which, as I assessment the people you need to have involved in understand it is not universal across all trusts, all that assessment. For us that is a decision that is not Strategic Health Authorities, at the moment—then always taken at the outset, so an assessment might I think that single assessment process, with the be made by an individual from one specialism appropriate tool as part of it, would be a help.2 rather than making sure that it is multidisciplinary and reflects the needs of the individual. Therefore, Q211 Dr Taylor: So it is part of it. I think an important start-point is to make sure you Mr Houghton: Yes. have involved in the assessment the people you need to have involved in that assessment. Q212 Mr Bradley: In terms of the multidisciplinary team where there is good practice, is it clear who Q207 Dr Taylor: The areas from which the is responsible for pulling that team or those complaints came, was it fairly obvious they did not individuals together? Are there diVerent people in have the right representation on multidisciplinary diVerent trusts responsible for taking the lead on teams? Or is that a simplification? determining who should be involved in that Mr Houghton: In some cases it became obvious wider review? from looking at the nursing notes or the care home Mr Houghton: It varies, I am afraid, between the notes, that there were, for example, regularly trusts. In some cases, certainly where there is an occurring psychological needs. With the best will in appeal tier with a Strategic Health Authority, there the world, a single nurse looking alone at these may is a clear lead given and a clear person who brings not be able to pick these up or may not see the it all together. In other cases, there is not a second significance of them when seen in a pattern of tier at all and it goes straight into the complaints behaviour. procedure. So it does vary a lot. Certainly, as part of the National Framework, we can contribute the Q208 Dr Taylor: Are the members of a areas where we see that it appears to work very multidisciplinary team laid down anywhere, as to well, and I think we could pull something out of who should be on it? Or is it left to the trust PCTs? that. Ms Longdon: The diYculty in that is that who should be there is so dependent on the needs of the Q213 Mr Bradley: Do you have a view of who individual. Individuals with a variety of needs are should take that critical lead? being assessed under these criteria, and therefore it Ms Longdon: That is a matter to which we would is a matter of judgment, clinical judgment in many certainly want to contribute, but I am not sure we cases, about who should be represented in any are saying that we think we have the answer as to individual assessment. It is not possible to say, that way forward. “The answer must be X.” People do have to exercise judgment and be flexible and tailor that to Q214 Chairman: One of the issues, following on the individuals concerned. from what Keith said, came out last week. We were talking about demarcation between health and Q209 Dr Taylor: Would absolutely clear criteria social care and health and social care professionals, reduce the need for training? Or is the need for and it was apparent from the evidence of Ms Kath training still absolutely paramount? Atlee, who I believe works in Hounslow PCT, that in their area they have joint commissioning 1 Note by witness: There should be a single set of assessment tools, as set out in the Ombudsman’s retrospective report 2 Note by witness: The Ombudsman’s report recommends a on continuing care. set of assessment tools, not just a single assessment tool. 3012251002 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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17 March 2005 Ms Trish Longdon and Mr Colin Houghton arrangements, so that is working multi- our report we put down lots of examples of not so professionally in a collective way. But that was not good practice, none of those are all concentrated in the case in other parts of the country from which one Strategic Health Authority. There are pockets we sought evidence, including my own part of and areas in all of them where there is practice that Yorkshire. Do you have any thoughts, in looking we think is great, and if we can replicate that and at the feedback you get from complainants, as to bring that together then I think there is good hope whether the way in which people operate for the future. professionally at local level has a bearing on the outcomes that might be presented to you? Would this joint commissioning model perhaps assist in Q217 Mr Amess: Primary Care Trusts could not addressing some of the problems that you face in have greater powers and bigger responsibilities, as other parts of the country? they appear to have at the moment, and there could Ms Longdon: I do not think we have the evidence not be any greater challenge for them than deciding to back up a view on that. We have some examples who exactly would be eligible for NHS continuing but I do not think we have a considered view about care. Your good organisation has made proposals joint working. about these panels and what they should be Mr Houghton: Where there are examples of that composed of and how perhaps their decisions be joint working and it has been set out clearly to the challenged. Could you elaborate a little bit on what carers and relatives: these are the people who are your proposals are actually trying to achieve. going to make the decisions, this is the process— Ms Longdon: We are interested in good and, even more, when they are invited to be part administration of a clear framework, which of the process—then we get less complaints from actually delivers across the country the right answer those people because everything is set out. A lot of for the individuals that are going through this the complaints we get are (a) “We think it is a process, in a way that takes account of their V wrong decision” and (b) “We do not understand di erences—because people who are seeking this V the system.” support are very di erent—but in a way that also ensures that people are treated consistently across the country. Q215 Chairman: So you do feel that the way people operate locally has a bearing. It may not necessarily be in terms of joint commissioning, but including Q218 Mr Amess: What are you proposing? users’ families in the process is helpful. Ms Longdon: We are proposing that there should Mr Houghton: Yes. be a National Framework, a single set of criteria Ms Longdon: Absolutely. We are very clear that that are applied across the country which needs to including the families/the carers is very helpful and be developed. We will contribute to that would certainly represent good practice. development, but that is clearly something that is a matter of policy for the Department of Health to lead on. Within that, there should be examples of Q216 Dr Naysmith: To probe a little further, what how you can undertake this process well in your you are saying is that you know of examples of local context. We also want to work with others, good practice, they are probably diVerent in in sharing our knowledge of what works with diVerent places, but you do not want to recommend others, in order to come up with examples of what any particular one until the whole thing has been works so that people can use that. Those are the examined a bit more closely. Is that really what you two key changes we are proposing. Within that we are saying? You want to look at these places where are saying there must be more training, there must there is good practice and see what you can draw be better documentation, and there does need to be out of that to recommend more widely. some clear monitoring of what is going on so that Ms Longdon: Certainly. That is because we are well everybody is clear as to what is working and what aware that our knowledge depends on people having complained in that area. There will be some is not. areas that we do not know about and they may have wonderful practices that we do not know Q219 Mr Amess: Who do you specifically think about, so our view is that we would want to should sit on these panels? Who should appoint contribute what we know in order to inform a them? What should their backgrounds be? better way of doing things but we do not pretend Ms Longdon: What we can do is to share some of that we have all those answers or all the the details that we have of good practice. We could information. let you have those subsequently, as examples of Mr Houghton: One of the things we did when where we can see things working in detail—not looking at this whole area was to take a reality saying that it should be the way, but that this is a check and make sure that we are not setting some way that we have seen working as good practice to gold standard for these assessments that no-one can contribute to your deliberations. Would that be a achieve. But we have seen excellent examples helpful way forward? throughout the country of the way assessments Chairman: Thank you. have been carried out, so we know that it can be done. I would like to go on record as saying of all the Strategic Health Authorities that they all have Q220 Mr Amess: What do you see as the role and good points that we can pull out, and, although in remit of these review panels? 3012251002 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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Ms Longdon: I am sorry? and they can go down. Also, where people have psychological needs—I saw that you had Barbara Q221 Mr Amess: You are not being terribly Pointin here last week—sometimes psychological specific, if you do not mind me saying. I asked the needs are not taken into account. Other examples question: Where are these people going to come are where, for example, someone will go into a from? Who is going to appoint them? What is their nursing home, look at all the nursing home notes, background? What are they going to achieve? I prepare a summary of their view of what that understand what you are saying, and I am not health care portrayal presents, and then present wishing to be rude but that is not exactly what I that to the decision panel. The decision panel will asked you. only have that summary and not the full notes, so Ms Longdon: I think the question you are asking someone is already interpreting something before it us is probably not one that as the Ombudsman’s ever gets to the panel. Those are some examples. OYce we are in a position to answer. Q225 Dr Naysmith: It sounds a bit to me like the Q222 Mr Amess: Okay. Benefit Agency medical assessments sometimes for Ms Longdon: Because we have a view which we benefit. If you do not get the full information the want to share but we do not claim to have the first time and people get turned down, then, when overall picture or the position to make that level of you have an appeal with all the evidence there, detailed recommendation at this point. people are given the money. Is it a bit like that? Mr Houghton: I think it may be. I am not sure. I Q223 Mr Amess: But you obviously want to get it observed a panel in operation last year, when I right otherwise you are going to be flooded with so was particularly impressed. The health care many problems. professionals engaged in a full discussion. There Ms Longdon: Absolutely. And therefore we are was not any acceptance of, “That’s what the nurse really keen to be part of this, and to add the says. Let’s look at the criteria. That is a take into information that we can and the help that we can account,” there was a full discussion about, “What about good practice—and just the sort of thing we does this mean? Let’s look at the raw material.” I were talking about which you can take from other have to say it is quite time-consuming, but the good areas. It is not just about what is a review panel, thing is that that was recorded and the decision that but we feel it is something we will contribute to was finally sent to the relative in that particular rather than something we want dogmatically to case—which was not to get full funding—was say, “This is the answer.” completely set out. There was no doubt as to how Mr Houghton: One of the problems with the Y the decision had been reached, what evidence had Ombudsman’s O ce is that we only deal with been used to come to that decision. I thought that complaints. When people are happy and there has was an example of good practice. been a good decision and they are happy with it, we do not see it. Even in some cases where we say, “We don’t think this is right. Can you do a Q226 Dr Naysmith: You said a minute or two ago reassessment?” they do not then necessarily— there were some examples of bad practice, where although a few people do—come back to us and you kept getting complaints from one or two say, “Great, it was done. Excellent. I am happy particular authorities. Is there any evidence that now.” So we do have slightly one point of view. they changed their tack when you sorted out these Mr Amess: Thank you. problems? Mr Houghton: Absolutely. My team have been Q224 Dr Naysmith: Could we look a little bit at the visiting. We hope to visit all Strategic Health retrospective review of the funding decisions. We Authorities and we have visited 10 at the moment. touched on it a little bit earlier, but could we In almost every case, we have met them, talked to explore it a little bit more deeply now. In your them about our concerns, and a really useful written evidence you describe: “flaws, often discussion has entailed. In almost every case, at the systemic, in the way retrospective reviews were end of that discussion they have understood where carried out.” Could you elaborate on that, with we are coming from; we have understood some of some examples of the flaws that you found in the the problems that they have had; we have agreed way the process is carried out? what was a good practice and what was a practice Mr Houghton: We have set some of these out in that possibly ought to be amended. Today, I have the follow-up report. By systemic we mean that in heard a couple of Strategic Health Authorities have certain trusts or in certain Strategic Health agreed to take back for re-assessment the Authorities they have a process. Where we see that complaints that have been made to us, taken on part of that process raises concerns with us, that board our concerns about the systemic flaws and has been replicated on every individual case. That is are going to re-look at those. what we call our concerns about the systemic flaws. Examples are only looking at one particular timeframe, so that, if a relative has been in a care Q227 Dr Naysmith: Did they re-look at any of the home from 1998 to 2000, they will do an assessment ones they did about the same time where they have based on the last six months. As you know, not had complaints? Or was it just the complaints people’s health care needs can vary, they can go up you drew to their attention? 3012251002 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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Mr Houghton: I think that is phase two. We are Those are the sorts of issues that have been raised getting them to look at our complaints first of all, with us at which we are presently looking to see to get them in the habit of doing these assessments what the answer would be. We have told the properly, and then we will be looking at going back Department about the cases and issued a statement over previous cases. of complaint, and we are investigating the issue of the sale of the house at the moment. Q228 Dr Naysmith: A little bit earlier we were talking about how not every illness is covered by Q232 Dr Naysmith: That is, that giving up Strategic Health Authorities, and it tended to be employment and giving up a house are two those who are more articulate and so on who knew examples. about the process. What should the Department do Ms Longdon: They are two particular examples. to ensure this does not happen, that retrospective Another issue is the rate of interest that people have reviews are available to everyone who should be received on the payments that they should have had having one? and did not receive. That is quite a large one for Ms Longdon: Again, I am not sure we are very well us. It is another issue we are looking at. placed to give you advice on that. We have seen Mr Houghton: People may have a view that the some examples. Some people have come and told only complaints we get are people saying, “I should us what they were doing, and that was interesting. have got full funding and I did not,” but there is We would suggest that more weight should be given a whole range of complaints about delay, the way to those PCTs and those SHAs who are working they were treated before panels. We do have a hard to publicise what is going on. Certainly, I do number of specific complaints about, “Okay, I have not think we have a simple answer which is: “We finally got continuing care”—or the estate has got suggest X, Y or Z should happen.” it—“but all I have got is retail price index and that Dr Naysmith: Would it be too burdensome to is not enough. I want you to get me more.” That recommend that every review should be looked at is something we are taking forward with the again, to see whether there was a possibility that it Department strategically because probably there is might have gone wrong? I do not mean in detail, an issue there in that we cannot look at an but look at everyone assessed over a particular individual case. period and decide that there might be something here to look at. Q233 Dr Naysmith: What proportion of the time of your unit is spent on looking at these things? Q229 Chairman: Do you want to go away and Mr Houghton: It is not large. think about that? Ms Longdon: I think so. Thank you, yes. Q234 Dr Naysmith: It could be quite complicated, and involve getting evidence going back quite a Q230 Dr Naysmith: You state that, when giving long time. redress to people wrongly denied continued care Ms Longdon: It is. funding, the guiding principle should be that the individual gets proper restitution or their estate Q235 Dr Naysmith: It is not just a question of “should be put back in the position that they would wrong assessments, but looking at other things as have been in had the maladministration not well. occurred.” Could you give us some examples of Ms Longdon: On the first point, in terms of the what you mean by that, and, of the cases you have amount of work, complaints come to us in sort of received, which you are taking forward now with waves, so that we are now hearing from people the Department that fall into this category. whom people accept did not get the full funding, Ms Longdon: The statement we make is a general and they are now coming to us to talk about what statement that the Ombudsman makes about all the happened when they were finally awarded it. So complaints that have come to her that people, as these are complaints that have come in much more far as possible, should be put back in the position recently than some of the others. In terms of our they would have been in. We are looking at some workload— specific complaints that have come to us from Mr Houghton: It is not great at the moment, but I individuals claiming that they have not been put am just not sure how many assessments are still back in the place they would have been, suggesting going through the process out there, going through to us— the appeals, local resolution, that will eventually come through to us. Q231 Dr Naysmith: What are the sorts of things? Ms Longdon: Suggesting to us that they can Q236 Dr Naysmith: What has happened since April demonstrate a link between actions that they took 2004, since the Health Care Commission took over which have had implications for them. The sorts of responsibility for this? Has it changed anything? examples we are looking at—and on which we have Ms Longdon: We have an agreement with the not made any decisions yet—are, for example, an Healthcare Commission about complaints about individual who said they sold a house as a result of retrospective reviews. That is something that we having to fund the care themselves; and an have agreed with the Department of Health, with individual who said that actually she gave up her the health bodies concerned and with the work in order to care for an individual herself. Healthcare Commission. That is, that, given that 3012251002 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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17 March 2005 Ms Trish Longdon and Mr Colin Houghton the people who are complaining about particular happened. Obviously, in cases where there are such retrospective reviews have already been through a a large number of complainants, as there are here, very lengthy complaints process and have then had it becomes a broader issue. But those payments their complaints referred back, but there was not have been made, we have examples of those, and the local capacity to review that and the Healthcare we think they are very appropriate. So they have Commission have not had an opportunity to build taken place in particular examples. up the expertise in this particular area, therefore the Ombudsman agreed to exercise her discretion, with Q241 Dr Naysmith: In this area that we are talking the agreement of everybody and very specifically about this morning. with the agreement of the complainant, to entertain Ms Longdon: We know of one in this area. But in the retrospective review complaints directly rather other areas too we know of them. than to go through the Healthcare Commission, and the Healthcare Commission have agreed with Q242 Mr Burns: You will be aware over the last us that any complaints they get about retrospective few years how many people have been grateful to reviews they will pass directly to us. the work of the Parliamentary Ombudsman, particularly with their original report and the Q237 Dr Naysmith: When will that arrangement follow-up report. Throughout the history of the end? Is it open-ended at the moment? Parliamentary Ombudsman, have there been many Ms Longdon: No, it is not. It is to do with the incidents where the Ombudsman has produced a retrospective agreements. We are clear that under report and found something going wrong and made the NHS complaints process, on which we issued a recommendations, and you have had to then report very recently, complaints should go to the produce a follow-up report? Health Care Commission before they come to us. Ms Longdon: I am afraid I cannot comment on the Those that are about funding, after April 2004, history. I do not know of that. under the new arrangements, will actually be dealt with by the Health Care Commission. We have Q243 Mr Burns: How long have you worked there? V o ered with the Health Care Commission—we Ms Longdon: Two years. have a lot of contact with the Health Care Mr Houghton: Seven years, including Commission—that we will share expertise with parliamentary. You mentioned parliamentary, do them, so that we can help them up the learning you mean parliamentary and health together or curve in this area, so that they are enabled to either? consider those complaints. Q244 Mr Burns: Would you agree with me that it Q238 Dr Naysmith: Is the Department of Health is, from your suspicion, very unusual for the not a little bit unusual in not oVering compensation Parliamentary Ombudsman to produce a follow- for maladministration? up report? Ms Longdon: I think it is fair to say that the Ms Longdon: Yes. Department have oVered compensation for the admitted fault in the retrospective reviews and they Q245 Mr Burns: Would you also agree with me that have made restitution in terms of the funding. We when you produced your follow-up report it was are saying: Is this all of it? So I think the principle fairly damning and rather surprising at the response is established that the Department have accepted in reality to the original report, in that you found that they needed to do something, and, indeed, they that over half of the cases that have been reviewed have paid out. I am sure they will tell you how were incorrect in some way; that there was much money they have paid out as a result. considerable concern at the delays in sorting out this problem and providing justice for those who had Q239 Dr Naysmith: That is not quite the same thing suVered an injustice; and that it seemed that either as maladministration, is it? Sometimes from some this was happening because people just had no clue departments we get a sort of compensation of what they were doing or there was a suspicion payment for— that, the longer it took, because of the length of time Ms Longdon: I am sorry, I misunderstood. and human nature, there would be possibly less complaints or others that would be abandoned Q240 Dr Naysmith: That is what I am really because the people were no longer alive, frankly, to asking about. contribute to the process. Which one do you think it Ms Longdon: We have the issue of what we would is, or a combination of both? call “botheration payments”—payments which are Ms Longdon: Certainly we are clear that what went about inconvenience or distress and worry—and we wrong was a huge disservice to a large number of will ask for such payments where we consider for individuals and we have drawn attention to that. As any complaint, on our parliamentary work and our you say, there was a lot of delay, there was a failure health work, that people have been put through to communicate, decisions were wrongly made, and that. There is nothing to prevent the Department of these are often frail, vulnerable people who are in the Health making such payments and for local health situation. We are very clear that in making this bodies to make such payments, and, indeed, they report to Parliament we were saying, “This is an do in a number of areas. We have examples where issue that needs to be looked at and we need to get we have suggested that should happen and it has this right.” In terms of the motivation of the people 3012251002 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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17 March 2005 Ms Trish Longdon and Mr Colin Houghton who were operating the service, I am not sure we are Ms Longdon: We were assured— in a position to comment on that motivation. Our sense was that there were a lot of people, locally, Q248 Mr Burns: By? working incredibly hard to try to make this system Ms Longdon: By the Department of Health. work in dealing with people—and perhaps getting it wrong, but not getting it wrong because they were Q249 Mr Burns: Are we talking about civil servants, deliberately trying to get it wrong but because they ministers, both? did not have the framework or the capacity and the Ms Longdon: I think I would want to check exactly competence with which to do it. I do not think we where those assurances came from before I answer have any information to suggest that people were that. I would not want to mislead you on that.3 deliberately delaying things in order to achieve some other outcome, but the eVect was that those delays Q250 Mr Burns: You are suggesting, so that I am were very significant and quite unacceptable. completely clear in my mind, that it was either civil Mr Houghton: If I could endorse that. Between the servants in the Department of Health or ministers period of the first report and the second report, the who misled you about those commitments. February 2003 and the December 2004 reports, not Ms Longdon: They gave us an assurance that a only did we have the complaints coming through, we timescale would be met on which we relied and had a great number of practitioners from trusts and which we passed on to complainants. That Strategic Health Authorities telephoning us almost subsequently was not the case. on a weekly basis to say, “We are struggling with this criteria. We are trying to do our best. Can you come Q251 Mr Burns: Presumably when those deadlines down and train us? Can you tell us what to do? Or, were not met and you felt you had been misled, you better still, can you come and sit on the panel and do were aggrieved because you possibly felt this with us?” Of course, we had to keep our distance embarrassed or you had let down people by your— from that. I think there were considerable eVorts to Ms Longdon: We had let down complainants. try to get this right, but they did not have the guidance or leadership at that time to get it right. Q252 Mr Burns: What did you do? Did you go back to the Department of Health to say, “Why have we Q246 Mr Burns: You may well be right from your been misled?” experience. The only experience I have is one Ms Longdon: We certainly raised it with the constituency case and, I must say, the performance Department of Health, yes. of Essex Strategic Health Authority in carrying out the review in no way near reflects your experience. It Q253 Mr Burns: Again, was it at ministerial level or was only through the PCT constantly badgering civil servant level? Or will you check that? them and writing to the Chairman that eventually Ms Longdon: In each case, we will check. one got it given to. Do you also find it surprising, given the pressure—because there is considerable Q254 Mr Burns: What was the response? pressure from a variety of sources to resolve this and Ms Longdon: The response, I think as you know, to right an injustice—that the minister responsible was that a new deadline was set and we were given for sorting this out at government level eight times access to that new deadline. We were told, “The gave commitments that deadlines would be met in deadline is now . . .”—whatever it is—and then we carrying out the backlog, including three in relied on that deadline in terms of the decisions that Parliament, and eight times those deadlines were we then took. missed and the commitments failed to be realised, to the point where he actually came before this Q255 Mr Burns: When that deadline was not met, Committee last summer to say that he was presumably you felt misled again. embarrassed by the situation? Do you find that Ms Longdon: We wrote a report, which is a matter of surprising? record, which says that we were concerned that the Ms Longdon: Certainly—and we are on record as deadlines which we had been given and which the saying this—we were concerned that we were misled public had been given had not been met. as to the timeliness of reviews—and, indeed, we then asked complainants to rely on those commitments Q256 Mr Burns: Do you find it extraordinary, given that were given. So we share your concern that the history of this saga, that you had to write that commitments were given and we therefore then said report? to a complainant, “You should go back to your SHA Ms Longdon: I think our term would be: we find it and it will all be completed by . . .”—December/ “regrettable” that we had to write this report. April/July—and therefore we are very, very concerned that we had assurances on which we relied 3 Note by witness: To clarify this point I quote from our which aVected people. We certainly share that Follow-up Report to Parliament “ We passed on to the concern. Department of Health concerns that we had heard from the NHS bodies about diYculties in meeting both the December and March deadlines. However, on both occasions the Q247 Mr Burns: That is quite a strong word Department assured us that their information showed the targets would be met and we passed on these assurances to “misled”. For the Parliamentary Ombudsman’s compliments, their representatives and Member of OYce to be misled is quite a strong condemnation. Parliament. It became evident that the Department’s Who do you think misled you? information was unreliable.” 3012251002 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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17 March 2005 Ms Trish Longdon and Mr Colin Houghton

Q257 Mr Burns: Presumably that is diplomatic for shorter part. The other point it would be useful to disappointed. know is: When do they consider a retrospective Ms Longdon: We are disappointed. And it is review case has been completed? Is it when the first regrettable because there are people who are decision is made to the relative to say that is the suVering during this process. There are individuals decision? Because it is then an ongoing case from there for whom this is terribly diYcult. there, through the various appeal mechanisms—and for our own planning purposes really it would be Q258 Mr Burns: We have a problem here in good to know how many other cases are out there Parliament now, because up until 16 or 18 that are likely to come on to our doorstep. September last year we could table parliamentary questions and by individual Strategic Health Q262 Chairman: Having listened carefully to the Authorities we could get the information and track answers you have given, one of the issues that came what had happened and what was happening to out very strongly in the evidence session last week those complaints. Just before Christmas the was over problems that have arisen in retrospective Parliamentary Under Secretary blocked my reviews over inadequate or completely absent questions seeking for further information on that. documentation—which has caused immense The Secretary of State very kindly agreed to supply problems. Is it reasonable to have expected the it when he came before the Health Select Committee Government to have understood the diYculties that in early January, but, when the question was re- would occur with their lack of documentary tabled, it did not actually get answered in the same evidence? Do you feel that level of knowledge should format as the published charts in September by the have been there in the Department of Health at the Parliamentary Under Secretary, it just said that all time you are looking at the arrangements for but two Strategic Health Authorities had completed reviewing these decisions? their cases. So, basically, we are being blocked. Are Ms Longdon: We have said that everyone was you being blocked, or do you know the answer to the surprised by the scale of the problem. We certainly question in a way that we cannot get that answer? were and therefore I think it would be diYcult to say Ms Longdon: Let me explain. We have said publicly that the Department should have known. I think the in our report that we believe monitoring of the scale of the issue is larger than anyone expected in situation is important and there should be February 2003. In terms of documentation, I think accountability around this issue. How that is we have been quite surprised by some of the achieved is not what we have said. We have said that documentation or the huge absence of should be achieved. We would agree that there documentation and the diYculty of getting it. One of should be public information available around that. our suggestions is that for the future there should be Do we have that information? I am not sure we do. some clear standards of documentation set out, both Mr Houghton: No. for the care records of the individuals and, I have to Ms Longdon: No. say, in terms of the records of the process of review itself, because there are deficiencies in both those Q259 Mr Burns: You do not have that information areas. We have talked about a number of individual either. issues, where families have gone to huge lengths to Ms Longdon: Nor have we asked for that try to track information that people have initially information specifically in the form that you are been told was not available but which subsequently suggesting. has been found to be available. So I think there is an issue over tenacity and where you draw the line in Q260 Mr Burns: Do you find it odd that Parliament trying to find records which, by their nature, have cannot get that information in the original way in proved very diYcult to secure. which the Government published it last September? Mr Houghton: I agree with that. In one particular Ms Longdon: Do we find it odd? I think we are case, there were diYculties because the care home saying that there should be information available. would not release the papers unless someone was The form of that information is something you will going to pay for the photocopying. In the end, we clearly pursue. I think it is a matter of discussion stepped in and got the copies ourselves and provided about that. them to the panel.

Q261 Mr Burns: The trouble is we cannot pursue it, Q263 Mr Burns: Do you already have the because Parliament cannot get the information. I information as to what was said to these people, in know the minister is coming here shortly. Maybe we terms of the cases you are dealing with, who are will be able to press him further. dead? Mr Houghton: The two areas of information that we Ms Longdon: No. would like and on which have been unable to get clarification are these. The Department have said that 20% of all the retrospective review cases have Q264 Mr Burns: Do you think it is many? resulted in restitution, but restitution could be the Ms Longdon: I do not think we have the evidence to whole of the six-year period or for the last two give you that information. Of course, this has been months of people’s lives. I think it would be useful to going on rather a long time now and, therefore, in decide whether it was for the whole period or for a the circumstances of a complaint, the patient may be 3012251002 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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17 March 2005 Ms Trish Longdon and Mr Colin Houghton alive at the beginning and not be alive at the end. material arising from the session. We have picked up Certainly we have had complaints from estates of a rumour there might be an election in the oYng. We individuals as well as from individuals who are alive. are hoping to be able to produce something pretty Chairman: Are there any further questions? Could I quickly on this subject, so we would appreciate as thank you both for a very helpful session. You have quick a response as you can possibly give us. We are indicated your willingness to come back to us with most grateful to you both for your help. Thank you.

Memorandum by the Department of Health (CC 9)

NHS CONTINUING CARE

Introduction 1. The Government welcomes the opportunity provided by the Select Committee Inquiry to set out the range of policy initiatives that form the National Approach to continuing care, and to comment on the progress made in reviewing past funding decisions. 2. Considerable progress has been made in the development of continuing care since the early 1990s. In 1995 the Department issued guidance requiring health authorities to develop eligibility for continuing care. Following the Coughlan judgement, a legal case from 1999, which provided some clarification of the responsibilities of the NHS and social services for long term care, the Department issued further guidance in 1999, and again in 2001. The former required Strategic Health Authorities (SHAs) to ensure that their criteria were Coughlan compliant, and the latter provided further consolidation. Following shortcomings raised by the Health Service Ombudsman’s report in 2003, the Department responded to her recommendations including providing appropriate recompense for those who were wrongly made to pay for the cost of their care. Following the amalgamation of the numerous former health authority criteria, to the 28 legally compliant SHA criteria it is now an opportune time to revisit the area and to improve practice and understanding. The Department would like to remind the Committee that three written ministerial statements have been made on the subject of continuing care in June, September and December of 2004.

How the Changes will Build on the Work Already Undertaken by Strategic Health Authorities in Reviewing Criteria for NHS Continuing Care and Developing Policies 3. The Department acknowledges the work already carried out by the SHAs in bringing together past criteria from over 95 sets into 28 sets of legally compliant eligibility criteria. In addition, the independent report on SHAs’ work on reviewing criteria and retrospective case reviews made clear how this has raised awareness and knowledge of the issues within the NHS. It is important that the momentum and progress are not lost. 4. The Department is working with the SHAs and other key stakeholders to establish the issues that the National Framework for continuing care should address. Other key stakeholders involved in this process are local authorities, voluntary organisations and the Ombudsman’s oYce. 5. One aspect of this framework will be developing a single national set of eligibility criteria. The SHAs have direct experience of amalgamating these eligibility criteria, and as such we will be working closely with them in order to learn from their past experiences, and from their best practice, to create a set of eligibility criteria that will be used by all 28 SHAs. 6. The Department will issue guidance around the implementation and application of these criteria, and will of course consult with all the key stakeholders and relevant bodies before its publication. This guidance will be drawn up following close working with SHAs. 7. SHAs have also developed local protocols in many areas for conducting the continuing care assessment process. The Department is setting up a website and discussion forum on continuing care which will facilitate the dissemination of best practice. The Health and Social Care Change Agent Team are also amalgamating current best practice protocols, and will be working with the Department and SHAs in order to issue best practice guidelines around issues which will make the assessment process easier to understand and to operate. This national framework of process and best practice will introduce a consistency of approach and response. 8. The Department will also work with its stakeholders including SHAs to look at the current range of assessment tools, and their role in the assessment process. Based on a consideration of all the benefits and drawbacks of the use of tools, the Department will agree an approach with SHAs. 3012251003 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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9. The Department has met on several occasions with SHAs at a national level in order to work on the National Framework. As a result of these meetings several workgroups have been set up covering areas such as NHS funded nursing care bands, training and public awareness, assessment tools and process, panel process, the integration of eligibility criteria, and interaction with local authorities. The national group have met twice to date, and the first workgroup on eligibility criteria has also already met. 10. This work will continue to raise the profile of continuing care within the NHS and aims to improve the public’s understanding of eligibility, and of the assessment process.

Whether the Review of Past Funding Decisions has Succeeded in Addressing the Needs of Patients Wrongly Denied NHS Funding for their Long Term Care 11. Strategic health authorities have been required to investigate cases where individuals may have been inappropriately denied fully funded NHS continuing care since 1996. Where investigations have revealed that care should have been provided the NHS has been recompensing individuals for the cost of that care. This process has formed part of the Department’s response to the Health Service Ombudsman’s report into long term care, which was published in February 2003. 12. The review of past funding decisions has in many cases concerned individuals who are now deceased. Where individuals are living the assessment has also meant that individuals future care needs (as well as funding) have been addressed. 13. The number and complex nature of cases that arose, further complicated in many cases by the diYculty of obtaining the relevant documentation for deceased patients, or care home records which date back a considerable number of years, has meant that there was initially a backlog of cases. 14. The Department has been working with SHAs with a low rate of completion to ensure that they have processes in place to complete cases swiftly and thoroughly. 15. The Department is only aware of one SHA where cases which were lodged before April 2004 have not been completed, and dates for the completion of these cases have been scheduled with the families concerned. 16. The NHS is committed to completing investigations as accurately and thoroughly as possible, and is striving to meet the aim of completing new requests within two months of the receipt of all the relevant documentation.

What Further Developments are Required to Support the Implementation of a National Framework 17. Having developed the core of the framework, there needs to be a successful implementation of the criteria, tools, guidance and guidelines. Attention will need to be focused on training, and a work group has been set up to look at the issues of training and public awareness. 18. The Department is considering a range of options which will improve the application of the policy at a local level, including developing and endorsing packages of training for front line assessors and practitioners. 19. The Department is looking forward to the outcome of this inquiry, which will provide useful information for this initiative.

Witnesses: Dr Stephen Ladyman, a Member of the House, Parliamentary Under-Secretary of State for Community Care, Mrs Anne McDonald, Head of Delivery Programme, Older People and Disability Division, and Mr Craig Muir, Deputy Director, Care Services Directorate, Department of Health, were examined.

Q265 Chairman: Would you like to introduce the evidence we have had, and we have just heard yourselves? from the Ombudsman about the information that Dr Ladyman: I am Dr Stephen Ladyman, they have picked up as a result of complaints. If I Parliamentary Under-Secretary of State for were to refer to a key feature of numerous inquiries Community Care and my colleagues are Mrs Anne that this Committee has conducted during my McDonald and Mr Craig Muir who work most nearly eight years as chair, the whole debate around closely with me on this issue. the margins of health and social care perhaps will come out as the most important issue that has Q266 Chairman: Thank you for your co-operation never been resolved. You, as a minister, are landed with this inquiry and the evidence you have given with a problem that has not been addressed by to us. We are most grateful. Perhaps I can begin successive governments in my personal view—and by talking about what I feel to be the core issue at colleagues round the table might diVer on this. Do the centre of some of the problems we have picked you feel that we are at a stage where over and above up in evidence. I am sure you have noted some of the continuing care issue we need to be looking 3012251004 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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17 March 2005 Dr Stephen Ladyman MP, Mrs Anne McDonald and Mr Craig Muir much more radically at how we address the national systems which require means-tested problems around that divide. I am not sure how provision, the NHS side of it is free, and any much money has been spent on this Committee in Treasury minister would be very concerned if we looking at the issues of health and social care and were to suggest combining the two areas, and make the problems arising around the margins, but I the social care entirely free. That would have meet numerous oYcials all over the country whose significant financial implications. However, what entire work relates to arguing with somebody the struck me is that we have never come up with an other side of the fence—health or social care— estimate of what it costs to police that demarcation about who is responsible for a particular line. Do you have any thoughts on that? I know individual’s care. It struck me on many occasions that the amount of time we spend as a committee that we must spend millions and millions of pounds and the amount of time the Ombudsman spends employing suits on each side of the fence to argue investigating these cases, and the amount of people with each other, when that money could go on we have got—an absolute industry involved in funding care. We may even save money by moving arguing it from a health care or social care agency in that direction. Do you have any thoughts on aspect as to who is responsible. We have cost that? shifting and cost shunting; we have the Delayed Dr Ladyman: Let me deal with the principle and Discharges Bill, and it still continues. There is a then the practicality. What you are saying in huge amount of money that could be saved that principle is absolutely right. There are many would oVset the implication, surely, of moving in disputes that arise because of it. If we just go back, the direction where we have entirely free care, and for example, which is most often quoted in relation we end the division that no-one can define between to NHS continuing care, the Coughlan judgment, health and social care. that is quite often misinterpreted. The Coughlan Dr Ladyman: I agree with you that there must be judgment said that there is a maximum level at a cost to it. We have not got an estimate for how which a council which has a responsibility to much it is. I am not convinced it is as substantial provide funding for social care can be expected to as you think it is, and as we move forward and talk provide that funding, and beyond that it is ultra about how we should be doing this over the next vires.TheCoughlan judgment did not make hour, if we move forward to providing an easier comments about NHS continuing care; it simply framework for making these judgments, then I said: “Here is the most that a council’s remit allows hope we can gradually eradicate those disputes. I it to pay.” In making that judgment, they think personally, although I entirely accept the acknowledged what you are saying; that this grey public do not understand it, that it is possible to area between the two is a real problem. The distinguish between the two, and we do need to do question we then have to grapple with is the best that because, as you said, we cannot provide all way of resolving that. I know that you personally social care free at the point of need. The Treasury have always advocated health and social care would just never accept it under any government coming back together again, which is more or less of any colour, red yellow or blue. We already spend the situation in Northern Ireland. I have to say that £12.5 billion on adult social care, under the current from my discussions with people in Northern system where people contribute to the cost of it. We Ireland, even there, where the two things are put Y know roughly speaking that there will be four times together, the situation is often just as di cult to as many people needing care by 2050; and their deal with. Some people will tell me, “oh, yes, it needs will be far more intensive. The fastest works wonderfully”, and some people will tell me, growing cohort of the population at the moment is “no, it is chaotic”. In the end it comes down to how people over the age of 100. To suggest that we closely social care and health professionals are could quadruple the cost, and then go further and working together; how well they understand each not charge people and make it all free at the point other’s needs and are discussing these issues and are of need is just utterly, utterly impossible to making sure they understand where funding of comprehend. We do have to keep a distinction particular types of care should come, and the between the two, because I am afraid it is inevitable structure does not much matters. If professionals under any flavour of government that people will have that sort of relationship and understanding, have to contribute towards the cost of their then it works well; if they do not, then irrespective social care. of the structure, it works badly. When you see the Chairman: I do not think it is fair to throw in fiscal Green Paper Adult Social Care, we will be measures that might be taken to recoup the money addressing some of the ways we see we should be from people who do not need that support, but that moving to try and address that divide and get is a factor that we should throw in. I was struck people working more closely together. yesterday—you said you think it is possible to define the distinction between health and social Q267 Chairman: Yesterday I tabled a question for care, and I wish you well on that one because I have next week’s health questions, which you will be met thousands of people who cannot. Yesterday, relieved did not come out in the raZe, but it was we had a lobby of people from the Alzheimer’s this: what would your estimate be of the costs of Society—and you probably met some of them administering the demarcation between health and yourself. It struck me, talking to a number of social care? One of the problems the Treasury has people who were caring for parents with with the statutory background to social care being Alzheimer’s or dementia, that it really seems totally 3012251004 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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17 March 2005 Dr Stephen Ladyman MP, Mrs Anne McDonald and Mr Craig Muir wrong to suggest that somehow in a complaint of First, there is the eligibility criteria, and secondly that nature, at some point you are moved from one the process you have to go through in any section to another and nobody really knows when particular local area in order to have that that happens. We will probably come back to that. assessment made. Some areas have diVerent problems than others. In a city strategic health Q268 John Austin: Can I come back to the authority it is easy to get people together to carry confusion about the eligibility criteria and out multi-assessment cases. In a rural environment particularly the Ombudsman’s report. You have it might be diVerent, and there might be diVerences partly accepted the recommendation of the in the way people want to carry out the reviews that Ombudsman’s report in carrying out the review are necessary in order to meet their own local and asking SHAs to carry out reviews across pressures and local issues. Broadly speaking, we their areas. want to end up with a system where absolutely Dr Ladyman: Why did you say “partly”? everybody in England will be able to say, “the assessment I have had would have come to exactly Q269 John Austin: You did not fundamentally the same conclusion, whether it was held in London adopt the national criteria and review— or Carlisle or wherever it was. Dr Ladyman: We are going to move to a national framework and we have those discussions to have Q273 John Austin: The new national framework as to exactly what that national framework will will have a single set of national eligibility criteria. include. Dr Ladyman: We have those discussions, but my belief is that that is where we will end up. This is a Q270 John Austin: Initially, you got the SHAs to consultation; we are bringing the 28 strategic health review the criteria. authorities together to identify best practice. They Dr Ladyman: That was the initial stage, yes. are giving us a very clear message. They want to have one single set of national eligibility criteria, so Q271 John Austin: Some of our witnesses have my belief is that is what we are very likely to agree suggested that that has reduced the postcode lottery with. If, in the course of these discussions, we find V that is not practical, we will have to have something from 95 to 28, but there is still a di erence of V interpretation between SHAs on those criteria. di erent. At the end of the day the key has to be Dr Ladyman: That is undoubtedly true, but there that a constituent of ours in one part of the country was another stage in the process as well, do not must know that they would have had exactly the forget. As well as asking the 96 health authority same decision wherever they had that decision criteria to be replaced by criteria adopted by the made anywhere in the country. strategic health authorities, as a department we also published criteria that they should base their Q274 John Austin: In the report of the independent criteria on, so there was a central national criteria, review it refers to SHAs saying there had been a and then the SHAs, where each expected to adopt staggering lack of guidance from the Department. their local processes and criteria to the national Would you ensure that that it is not the case in system, and then were expected to go and make the future? sure that they had advice that the system they were Dr Ladyman: I would not accept that at all. We proposing to use locally was compliant with our worked incredibly closely with the strategic health national guidelines and legally compliant. The authorities and with the Ombudsman. I have not framework was sound on a legal basis. You are heard what the Ombudsman has just had to say to right that on the face of it we only reduced it from you, but I would be surprised if she has not pointed 96 to 28, and therefore there were 28 diVerent out that we work very closely with her, and when postcode lotteries; but actually those 28 were based they bring issues to our attention we do try and on the national guidelines, so there should have follow them up. Equally, when strategic health been far more consistency between those 28 than authorities have identified that they have had ever there was between the 96 they replaced. We problems, whether it is a problem with a lack of did that because, frankly, going from 96 to one, at understanding or practical problems, we work very a time when we had this huge review to carry out, closely with them to try and resolve the issues. I our judgment was that it would just have been an would dispute that, but people’s perceptions are impossible task to do that. We are taking what we their perceptions. see as being a progressive approach to meeting the Ombudsman’s recommendations, and having got Q275 John Austin: My understanding was that one the 28, having gone through the review, we will of the recommendations of the Ombudsman’s move from here to a national framework, and we report was that the Department should review their will have that discussion over the next 12 months. guidance to strategic health authorities on eligibility for continuing care, and that was not Q272 John Austin: You are giving an indication done, was it? that the new national framework will eVectively Dr Ladyman: What the Ombudsman would have have a single set of eligibility criteria. liked in the first place was for us to move to a single Dr Ladyman: Certainly. There may be diVerences. set of national criteria, and we took the view that We will have to talk to the SHAs, because we have that just was not a practical option when we had to accept that there are two parts to the equation. a huge retrospective review to carry out, when each 3012251004 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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17 March 2005 Dr Stephen Ladyman MP, Mrs Anne McDonald and Mr Craig Muir of those cases which were previously considered— Dr Ladyman: Block? the errors had been made because of the attempt to try and carry them out under 96 sets of criteria. It was just too much of a task to go to a single set Q280 Mr Burns: You refused to answer it. of national criteria and a national system in the Dr Ladyman: No, I did not refuse to answer it. time that the Ombudsman wanted us to carry out What I wanted to do— the review. That is why we took a pragmatic view that we would go to 28, and now having done that Q281 Mr Burns: What did you say then, if you did and made what we believe is substantial progress, not refuse to answer it? What was the answer to the we have taken the further step of saying we will question? now go to the national framework. We are agreeing Dr Ladyman: I had said that from a certain point with the Ombudsman. We have got to where the we stopped collecting the data. My understanding Ombudsman wanted us to be, but we got there of your question was that you were asking me to perhaps over a greater length of time than she overturn that decision and keep collecting the data. would have really wanted. At least we got there, and I do not think we would have got there if we had tried to do it in one step. Q282 Mr Burns: No, my question actually was the question asking for the figures that you had given in September, which from memory went up to Q276 John Austin: I am not suggesting one step, March 2004, be updated to July 2004. You said but I was a member of this Committee 10 years ago that you did not keep the figures any more and you when we said there was basically inequity in local would not publish them—though of course your eligibility criteria. Would you agree it has taken Secretary of State came to this Committee in early rather a long time to accept the recommendation January and when told about this told the that we made 10 years ago? Committee that we could have that information. Dr Ladyman: I am certainly very happy to suggest When he wrote to the Committee he then said that that the Government of 10 years ago made all strategic health authorities had now completed mistakes! their reviews on those timescales bar two, which was not altogether a comprehensive answer along Q277 John Austin: You mentioned the way in the lines of your answer of September 2004, but it which you were seeking to co-operate with the suggested that you had the information, or the Ombudsman, and we are aware of the letter that Secretary of State would not have been able to give the Ombudsman sent to the Department regarding that answer. I therefore ask the question again: why the confusion in SHAs on the whole procedure of will you not publish the information? assessments under continuing care funding and Dr Ladyman: You did ask that question and we did RNCC, and there was a suggestion that in some give you an update, which referred back to our areas the assessments were being done in reverse written ministerial statement, and then gave you order. the latest figures that we had. The fact of the matter Dr Ladyman: Which of their letters was that? is that the review cases that we were asked by the Ombudsman to look at were those people who had Q278 John Austin: The letter to Ms McDonald on been wrongly assessed in the past. As time goes on, 1 February 2005. The Ombudsman told us earlier after we had carried out all of those review cases, that there had been a response, but I wondered if we continually had to review current cases. Current that response could be put in the domain of the cases come in all the time, and the data is becoming Committee. increasingly confused. This was one of the reasons Dr Ladyman: I am happy to let you have that. I for a lot of the controversy and a lot of the suspect you are probably entitled to ask for it under headlines over the previous written ministerial the Freedom of Information Act, even if I did not statements—all the people the newspapers said want to give it to you. I am happy to give it to you. were being denied the care they deserved. There is confusion in the strategic health authorities Q279 Mr Burns: As we have been talking about the between the current cases that are coming in, Ombudsman, last September you very helpfully people who are now applying for continuing cases, made a ministerial statement about the current and the review cases that they were being asked to situation with regard to the reviews, and with that provide. It is becoming impossible to separate the statement you had a very comprehensive chart by two sets of figures. strategic health authority on the number of V complaints that had been received on di erent Q283 Mr Burns: Why? timescales, the number of cases that had been Dr Ladyman: For one thing, there is an completed in their review and the percentages of administrative cost in separating the figures. those that had been reviewed, and those that were successful to the individual, i.e., the complaint was upheld and money was paid to them as a result. Of Q284 Mr Burns: Why can the Secretary of State course, life has moved on since then, and give the answer in a slightly diVerent form, but you Parliament likes to know about these things. Why cannot? The Secretary of State’s answer to our did you block my question in December when I committee was that all of the reviews had been asked you to update those figures? carried out except in two SHAs. That suggests that 3012251004 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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17 March 2005 Dr Stephen Ladyman MP, Mrs Anne McDonald and Mr Craig Muir to produce that answer, he has the figures, because aware of from the review cases that are still if he did not have the figures he could not give outstanding. We have got those figures by ringing that answer. the strategic health authorities and saying to them, Dr Ladyman: That implies that we have had the “how many other review cases are still recovery and support unit ring the strategic health outstanding?” If you were to ask me other authorities and say to them, “have you completed questions, though, such as, “how many cases are all the review cases that you were asked to you currently considering; and how long are those review?”—and all but two out of the 10,000 cases cases taking?” there would be an administrative that we have been asked to review—review cases— overhead on the strategic— there at this moment, as far as we are aware, 13 cases that still remain outstanding. If you want me Q287 Mr Burns: I am not asking that question. to give you a month-by-month account of that, Dr Ladyman: I am giving you the answer to the then I can give it. That is an administrative question you wanted: there are 12 cases overhead, and I just do not want to impose on the outstanding. strategic health authority. Q288 Mr Burns: I can see that we are not going to Q285 Mr Burns: Hang on, Minister. When it suits get any further, and I must say that I do think it you, you are quite happy to provide those figures, is an abuse of Parliament that you are not prepared i.e., in September last year when you made a to provide those figures when you were quite ready statement to Parliament, when you were making to in September of last year. One other question progress so it looked good for you—you were quite slightly leads on from that. We had evidence, as happy, despite what you are now saying about you know, from the Ombudsman’s oYce before administrative burdens and costs—to provide that you, and their report states that they believe they information. But when the going gets tough and the were misled by the Department on this whole issue information might not be quite as helpful to your of carrying out the reviews and the deadlines. Do department, you then suddenly start saying there you think that is a fair criticism? are administrative problems, there are costs. If the Dr Ladyman: Absolutely not, and I would be Secretary of State— amazed if that is actually what she said to you. Dr Ladyman: If the information we produced last Perhaps the stenographer— September was helpful to the Department, you were not reading the newspapers. Q289 Chairman: We will check the record as to exactly what was said, because there was quite a Q286 Mr Burns: No, it was helpful to the lengthy exchange about this. One of the issues that Department because it was showing that you were I asked about was in relation to the evidence we making progress. It was singularly unhelpful to the received last week over the diYculties in respective department because yet again you had missed one reviews because of the lack of records. of the committed deadlines that you had given in Dr Ladyman: Absolutely. public and to Parliament to have those cases reviewed; so in that respect, no, it was not helpful. Q290 Chairman: And the appalling state of records It was helpful because we had a better idea through in some of the private care and nursing homes. Did the information of what the current situation was. that come as a surprise to you as a minister that My question is—and you have just said that you these diYculties were so severe in reviewing these think there were 13 cases that have not been cases? completed. If you know there were 13 cases, Dr Ladyman: It did come as a surprise to me, but providing you are correct, then you, I would on reflection I realise that probably it should not suggest, know a little more about the figures or you have come as a surprise to me because the fact of could not come out with the figure of 13. My simple the matter is that when assessments were being question is: why can Parliament not have these made by this process, since 1995 when the original figures? decision was to have local criteria, people were Dr Ladyman: I am telling you the figures that I carrying out these reviews in good faith. I do not know, and that is by ringing the strategic health suppose any of them considered for one second that authorities and saying to them, “how many of your 10 years later somebody was going to have to go review cases are still outstanding at this moment?” through their notes and try and see how they made The answer I am told is that there are 12 cases those decisions and why those decisions were made. outstanding. There is another one been done— I suspect that people were making decisions; there are 12 cases outstanding. I can tell you for 8 decisions were reported to people. I have no doubt of them the strategic health authority responsible, there was record-keeping at the time associated and the reason that they have given us is that they with those decisions, but after a period of time I have had some staV shortages. The other four are think it was perfectly reasonable, especially since by delayed partly because of the need to get notes definition many of these people will unfortunately from the private sector, who have not been able to have passed away—the people who keep these provide them, and partly at the request of records probably assumed nobody was ever going representatives of the patients who have asked for to want to go through these things for financial the decision to be delayed for one reason or purposes. It has been a huge task to get the records another. Those are the only 12 cases that I am back from a lot of these things. I was a bit surprised 3012251004 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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17 March 2005 Dr Stephen Ladyman MP, Mrs Anne McDonald and Mr Craig Muir about the complexity of it all, but on reflection amount of publicity which generated then a huge perhaps we should not have been surprised. What amount of more cases that we had not estimated I take exception to in relation to what Mr Burns for. In the periods that we said we would complete has said is the suggestion that the Department the review we completed as many cases as we knew misled the Ombudsman. I have no doubt that we about at the time we made commitments. However, may have given figures in good faith that more cases came in and that was why some subsequently we have had reason to revise or we deadlines were slipped. The reason that I provided have given information in good faith which those written ministerial statements, far from subsequently it has turned out we have needed to wanting to provide information that was helpful to correct. I can accept that that might have the Department, it was entirely because I felt that happened, but the notion that either me or my Parliament had not been given accurate oYcials would have misled the Ombudsman, I take information in the first place, through no fault of very great exception to. our own, and therefore I made those subsequent Chairman: It would be helpful if the record was written ministerial statements to make sure that checked, and you can respond subsequently to Parliament had the information that I felt it was what was actually said. entitled to to clear that up.

Q291 Mr Burns: You can look at the record, but Q294 Mr Burns: We do not want to perpetuate this the word “misled” was used, as any member of the for too long, but just one! You gave a commitment public here listening, and all my colleagues round that all the cases up to either December 2003 or this table listening—and just to narrow it down, March 2004 would be completed by July 2004; and their going away in answer to a question to try and your ministerial statement of September 2004 clarify whether they though that applied to shows quite clearly that was not the case—you had ministers or to civil servants, and then are reporting done about 88% of— back to us. They are not reporting back to us as Dr Ladyman: If you look— to whether or not it was misled; it was who might have misled them but it was ministers or civil Q295 Mr Burns: So there was a commitment servants. broken that contradicts what you have just said. Dr Ladyman: If you look at the number of cases Q292 Chairman: I think there was a bit more that we knew about, that we were talking about qualification than Simon has suggested. That is a when we made that commitment, we completed as personal view. We will check the record, and many cases as we knew about at that time. The fact obviously you can come back to us on that. that some cases turned out to be more complicated Dr Ladyman: Before we go oV this subject, to be and therefore overshot the deadline we did not frank with you I would take exception as well to know about at the time, and the fact that far more the Ombudsman dividing it up like that. If she feels cases came in so we had a bigger body of cases to she has been misled, I have misled her because deal with, we could not estimate at the time. We oYcials work for me and for the Secretary of State dealt with as many cases as we knew about at the and I will take responsibility for any information time we made those commitments in the time that that she was given, and I will deal with it if anybody we said we would carry out those reviews. has actually; but I can tell you that none of my oYcials have at any time misled anybody. We may Q296 Mr Burns: Your statement just has been have made errors, and I have no doubt that errors contradictory because you gave two qualifications; can be pointed to, but I take great exception, and one was the cases you already had that turned out I will take exception with the Ombudsman as well to be more complicated; but you knew about them if the record subsequently proves that she is at the time you made the commitment. You may suggesting we have misled her, because that is not have known how complicated they were, but simply not the case. I have struggled to give you knew at the time you made the commitment accurate information, and when I cannot provide that all cases would be done by 31 July, and you accurate information I have held up providing any failed to meet that deadline—so the statement you information until I know I can provide accurate have just given is contradictory. information. Dr Ladyman: It is not contradictory at all. I cannot remember the number we knew about at the time Q293 Mr Burns: I think it is on the deadlines that when we suggested deadlines for completing them. the review is being carried out, not on the We completed X cases in that timeframe. Some of individual pieces of information. the cases at that time though turned out, for the Dr Ladyman: Let me comment on that. Yes, we did reason the Chairman has said, to be far more make commitments for the speed that the review diYcult to deal with than we thought because we would be carried out. At the time we made those had to recreate records and go back to people’s commitments we based them on estimates of the memories and re-examine patients where possible cases we knew about at the time, based on our in order to make the assessment. That was discussions with the Ombudsman and our something we had not factored in in the original discussions with the health authorities. Having case, so I entirely agree that he review of some of made those commitments and the publicity about the people who we knew about at the time we made this that was in the newspapers, there was a huge those deadlines, went over the deadline. The 3012251004 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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17 March 2005 Dr Stephen Ladyman MP, Mrs Anne McDonald and Mr Craig Muir number of cases we knew about at that time, is the way we can make sure that in the future these however many thousand it was, we dealt with that reviews are carried out automatically. Individual many thousand cases inside the deadline; so we patients should not have to understand this system were working at the pace that we said we would be in order to get their reviews; it should be a process going to work at. It turned out that far more cases that is automatically triggered and automatically then came in that we had not factored into the carried out. The key to doing that is to have this equation, and some of them were more complicated built in to the single assessment process. In terms than we thought. We tried to deal with those as best of the toolkits that we provide to do this, one of we could; and of course the advice we were given the reasons why we have started this review with throughout this was that the people doing the the strategic health authorities is first of all to reviews should prioritise the living. So cases where identify best practice, because some strategic health we were dealing with people’s estates were given a authorities are saying to us “we have a system that slightly lower priority than people who were still seems to work perfectly”. They may be wrong alive. I felt that was the right advice to give and I about that; the Ombudsman may be giving them a stand by that. telephone call in the next few weeks and telling them how wrong they are about it; but some of Q297 Mr Burns: Sorry, did you not just say that them believe they have a system that works very some cases became more complicated so that you well. Where people think that, then we obviously could not complete them in the time—that you want to adopt that as best practice. Whether it will knew about? be one toolkit for everybody or several toolkits we Dr Ladyman: I do not know how many diVerent will have to discuss, because I am acutely aware of ways I can try and say this to you, Mr Burns. the diVerence between making assessments in urban environments compared with rural environments in Q298 Mr Burns: You are contradicting yourself. particular. One way of doing things might not suit Dr Ladyman: I am not contradicting myself. the entire country.

Q299 Mr Burns: You are. Q303 Dr Taylor: The Ombudsman was very clear Dr Ladyman: I am making it quite clear that we that there are examples of good practice. Is a knew about a certain number of cases, when we potential disadvantage of a robust assessment tool said we would be able to complete these cases by that it really conflicts with professional judgment, a particular date. We underestimated the or can you allow space for that? complexity of some of those cases, so some of those Dr Ladyman: I do not know whether my colleagues individual cases overshot the deadline. want to address that because they have been having the direct conversations with the strategic health Q300 Mr Burns: Yes, so you did not meet the authorities. My instinct is that there does need to deadline. be some room for a professional judgment, but how Dr Ladyman: That I accept entirely. However, we we build that into an objective process which did complete within the deadline the same number presumably the Ombudsman will be keeping a of cases as we knew about when the deadline was beady eye on over the next 10 years as well as she announced. has over the last 10 years, is the question that we have to address. If we can do that and still end up V Q301 Mr Burns: That is a di erent issue. with objective criteria that everybody understands, Dr Ladyman: It just so happens that by the time then instinctively I would see that as being we reached the deadline there were several necessary. Ultimately of course professional thousand more review cases to be carried out. judgment is part of the assessment. It needs to be the judgment of a group of professionals rather Q302 Dr Taylor: Getting back to the national than a single professional, but there does have to frameworks and the quality of assessment, last be space for that judgment to be expressed. week we did not hear many concerns about the 28 Ms McDonald: Certainly some of the SHAs have sets of criteria. The concerns we heard were the designed tools that give the general process and interpretation of these criteria, for example the approach, and then there is some room for representatives from the Alzheimer’s Society and professional judgment based on the individual case, from ICAS said quite clearly that the system was because obviously the circumstances may suggest not working. Again, from the Ombudsman just a that what the tool gives you needs to be adjusted. few minutes ago, we have got their statement: “In more than half of the cases examined we found that the assessments had not been carried out properly” Q304 Dr Taylor: I was very relieved when you said, with a list of the ways that these were not carried Minister, that the aim of the assessment will be to out properly. Under the new national framework, produce the same conclusion wherever it is carried when you are thinking about national assessment out, so you are aiming for fairness. In relation to tools will you be recommending just one set which timing, with the dissatisfaction of the way the will fit within the single assessment process? system is working at the moment, how quickly will Dr Ladyman: In my mind—and we have to work you be able to get the national framework through, with the National Health Service to identify this— and I gather from one of our advisers that the the key is the single assessment process because that single assessment process is not being implemented 3012251004 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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17 March 2005 Dr Stephen Ladyman MP, Mrs Anne McDonald and Mr Craig Muir in the way that was envisaged or at the speed that picking up the bill, except for self-funders. Under the NSF anticipated. Have you any comments on those circumstances, it is in councils’ interests, if that? they think the person might be eligible for NHS Dr Ladyman: The single assessment process is being continuing care to make sure that they have been implemented very successfully around the country, assessed for NHS continuing care, because then the and it is available everywhere. I would have to say council will not be paying the bills. that my experience is that it is working better in some places than others, but it is a complex process Q307 Dr Taylor: So this could come to council and it would be surprising if, when you needed to scrutiny committees as well. carry out multidisciplinary assessments, it was Dr Ladyman: Absolutely, and I would encourage working perfectly everywhere. As far as the single scrutiny committees to be looking at how the single assessment process and NHS continuing care is assessment process is working both within their concerned, we have always made it clear that as authority and within the local health service. part of the single assessment process, indeed as part of the review for registered nursing care, there Q308 Dr Taylor: Can you give us any idea how should always be a determination as to whether quickly you are going to be able to push the NHS continuing care is appropriate as part of that. national framework through so we have a single What I think we need to find a way of doing is assessment process, national assessment tools, ensure that all older people undergo the single agreed criteria? How quickly is it reasonable to assessment process. Sometimes what happens is think we can get that through? that there might be ad hoc judgments that this Dr Ladyman: You use the word “push”. I want this particular old person is not ill enough to justify to be done as quickly as possible. I am worried going through the process, and I wonder if that is about pushing because this is such a complex area, where some of the errors get made and people find and frankly it has not been done right and people themselves being discharged without having gone have suVered as a result of it. I have said that through the single assessment process, and before and I will say it again. I think the reason therefore without an automatic triggering of the why it happened in the past—and I am not making review for NHS continuing care. That is one of the a political point here and I am not blaming the things I will be wanting us to be looking at over previous government for it—was because decisions the year, because as you have already identified in were made too quickly without too much thinking. your evidence, it is no good us just looking at NHS I am loath to push decision-making. We have got continuing care as if it stands in isolation; we have to get this right this time. to look at it alongside the other issues like the registered nursing care contribution and the single Q309 Dr Taylor: Can I change the word to “aim”? assessment process and the way assessments are Six months? carried out in the community by social services Dr Ladyman: My hope is that a minister can be departments. sitting here this time next year, explaining how it has all been sorted out now. Q305 Dr Taylor: It is reassuring that you are mentioning that it will always be an automatic Q310 Dr Taylor: Do you have plans for a national process, because we have had evidence that people training programme? who could be eligible for continuing care are just Dr Ladyman: Yes. missing out and not being assessed, so we would Ms McDonald: There are a number of steps in this. welcome the automatic process. There is awareness by NHS staV, and training is Dr Ladyman: Anybody being discharged from an an important step in that, and it is about bringing acute ward, especially where the reimbursement consistency as well. The national framework will system comes into play, we have given very clear have a number of levels, which includes both the instructions that any older person being discharged criteria and the assessment tools, but also a training from an acute ward should have gone through the package and consistent information for users and single assessment process and should have patients as well so that we are improving awareness automatically been considered for NHS continuing on four diVerent levels. care before discharge. We have given very clear guidance to all acute hospitals along those lines Q311 Dr Taylor: So you are aware of the need already. for training. Ms McDonald: Yes. Q306 Dr Taylor: How do you plan to monitor that? Dr Ladyman: Under the national service Q312 Mr Amess: Sadly, the husbands of two of the framework, the National Director, Professor Philp, constituents who came to the Alzheimer’s lobby monitors the implementation of the single yesterday had died, so these decisions that are made assessment process; and of course the healthcare about funding are pretty important, and primary commission have a responsibility to do it; and also care trust panels and their funding decisions will be I would be surprised if it was not becoming self- at the centre of this. I wonder what you feel about monitoring in that if somebody is being discharged these panels. Not all primary care trusts have them. from an acute bed, who might be eligible for NHS How important do you feel they are and how do continuing care, then the local council will be you see them working in the future? 3012251004 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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Dr Ladyman: Panels, by definition, are made up of The problem with dementia is that they need human-beings, and human-beings make errors and assistance with things that do not require judgments, and sometimes the judgments are not healthcare professionals, with some of the simpler where you want them to be. We have to aim for a means of just staying alive. This would not qualify framework that everybody understands and aim for as healthcare professional assistance, but because systems that can make assessments that are open of the nature, as a condition, they fall into that and people can see what is happening, and ensure bracket. that there is an understanding by those people who Dr Ladyman: That is right. They certainly need have to go through the system as to what is going help with personal care—there is no question about on. Do I think all the panels involved in these that. Personal care however, under the current judgments meet those criteria at the moment? No, system—and we will talk about this later no I do not. That is where we have to be, and that is doubt—is a means-tested service. For the poorest what the next year has to be about—identifying people in society, about a third of them, we pay all how we get to a position where we meet those of the costs of their personal care. For another criteria. third we pay some of the costs of their personal care. Another third we expect to meet the cost of Q313 Mr Amess: Will your review address the role their personal care because they are people on of constitution of these review panels? significant incomes. The alternative is to go down Dr Ladyman: Yes, I think everything is on the a route of free personal care. Let me emphasise— table. I am sorry that there are no Liberal Democrats here— Q314 Mr Amess: All up for consideration. Dr Ladyman: Yes. Q317 Jim Dowd: Why? Dr Ladyman: Because I like to be rude to them to Q315 Mr Amess: Can we then move to mental their faces rather than when they are not present. health. It is a very, very diYcult area for us all to They deliberately mislead the public and people consider, but at the moment it appears that under with Alzheimer’s about what their policy is. Free the current criteria a great deal of emphasis is put personal care is not the same as if you go into on the physical aspects of disease. This certainly residential care or a nursing home having your fees disadvantages people with dementia. This was paid for you. You still have to pay your board and highlighted in the Ombudsman case by Barbara lodging, and in Scotland you still have to pay your Pointon. Will new criteria take this into account? board and lodging. I suspect if you were to do a Dr Ladyman: Let us just step back a second from poll of all those people from the Alzheimer’s what you have said. NHS continuing care should Society who came to see you yesterday, you will become available to you if you need the find a large proportion of them think that free involvement on a regular basis of healthcare personal care and free long-term care are professionals in your treatment. That is the criteria. synonymous. That is, frankly, a callous It is not diagnosis-specific. It does not say, “you misinterpretation of policies on free personal care. have cancer; you can have NHS continuing care” Indeed, let me just say that one of the things we or “you have got dementia, you cannot have”. have done in England—when people go into a care People with dementia are as entitled to NHS home people say they have to sell their own home continuing care as anybody else. However, the to pay their fees. In England, nobody has had to do judgment has to be whether they need, in order to that since 2001 because we have given every single maintain their condition or to improve their council the money to put a charge on their property condition the regular involvement of healthcare to be sold after their death. I am not saying all professionals. If somebody with dementia does not councils tell people about it and that all councils need that regular involvement of healthcare have made it as freely available as they ought to professionals, then they will fall outside the criteria have done, but it is there. In fact, that is one of the for NHS continuing care. If they do require the things that would have to be scrapped in order to involvement of healthcare professionals, they will pay for free personal care, so under a system of free come inside the criteria and they will get their NHS personal care more people will end up selling their continuing care, as was the case with Mrs Pointon. homes in order to pay for their care. Secondly, the She did get for her husband NHS continuing care. only comparative system we have in the UK to I just take slight issue with you in the implication compare this with—if you are receiving care in your of what you are saying, that one type of condition own home, once the cost of that care reaches a rather than another benefits from this, whether you point where it is cheaper to put you in a care home, have a mental health problem, whether it is you are put in a care home. When your care in a dementia, whether it is a physical problem, the care home reaches the point where it is more criteria needs to be around how much involvement expensive to put you in a long-stay hospital, you you need from healthcare professionals in order to are put in a long-stay hospital. NHS continuing support your condition. care is not an issue in those parts of the United Kingdom because it does not exist, because you Q316 Jim Dowd: This was a point raised with us cannot receive the support Mrs Pointon got to stay yesterday during the lobby, when I am sure most in your own home anywhere else in the United Members around the table met with constituents. Kingdom. Mrs Pointon’s husband would be in a 3012251004 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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17 March 2005 Dr Stephen Ladyman MP, Mrs Anne McDonald and Mr Craig Muir hospital—end of story, no argument, no caveats to Dr Ladyman: Let me make the role of the it. That is one of the ways that people have misled Ombudsman in this clear from the Department’s the lobby and the Alzheimer’s Society about what point of view. We set up a system with checks and free personal care means. balances, one of which is the Ombudsman. We set up the Ombudsman to be the independent arbiter Q318 Chairman: In relation to personal care, of when we make mistakes, and that is what she is particularly with people who have Alzheimer’s and doing. Yes, I congratulate the Ombudsman. I dementia, would you accept that if a person may congratulate the Government for putting in place not necessarily need care by a registered nurse— an independent check on the system to ensure that would you accept that 25 years ago a person with ultimately everybody does get what they deserve. those needs would probably be in hospital getting care? Dr Ladyman: Yes. Q321 Mr Amess: In dementia we are told that as people decline they become less likely to qualify for the continuing care because they become more Q319 Chairman: Something very interesting passive, but they still have considerable complex happened. I am the only politician around the table needs which can be overlooked by emphasis on who is not standing for re-election, so I am trying stability. This is going back to your original to make a genuinely objective point, that successive reaction to the point I made. I think it is a little governments over a period of 25 years have allowed more diYcult really. a quite profound change that has taken place where Dr Ladyman: It is diYcult. As the Committee people would have received free nursing care, knows, I do have personal reasons for feeling very where they now have to pay for that nursing care sympathetic to people that are in this position, and that may indeed be provided by somebody who is these are the issues that we need to thrash out over not a registered nurse. Would you accept that that is a fair point? the next 12 months. If people can come up with Dr Ladyman: I accept there is a debate around that. sustainable ideas for how we can continue to In parts of the United Kingdom the long-stay pursue this and do better, then absolutely I will see hospitals have been retained, so they do not need to it, assuming the Prime Minister puts me back in NHS continuing care. NHS continuing care was this seat after the election, that those things are introduced as a concept to deal with the fact that pursued. These are very, very complicated issues. in England policy was to remove the long-stay Everybody wants simple criteria, but frankly simple hospitals. This was a policy of the previous criteria are often crude criteria, and crude criteria government which I happen to agree with—for will leave people who we want to support outside once. I do not think hospital is the right place for the system. The criteria we end up with may have older people if they can be supported in the to be more complex than people want, in order community. Most older people tell me, by a huge, exactly to try and deal with these issues where huge majority, that they want to stay in their own people clearly should have a need for it. Having homes for as long as possible. When they cannot said that, will we go down the route of free personal stay in their own homes, they still want to stay in care, which would be a way of resolving this point environments that are close to being like their own at a stroke? No, absolutely we will not. It would homes, and where they can maintain their cost £1.5 billion at today’s prices, not the £1 billion independence and dignity. We will be saying a great incidentally that the Liberal Democrats cost it at. deal more about that in the Green Paper next week. That is a matter of record. I have provided data in You are right: if you keep the long-stay hospitals, the House of Commons Library and in the oYcial if you keep a policy that says we are going to record as to how that has been calculated, and so institutionalise old people as soon as they have care nobody can argue with those figures. They have needs or as soon as they become a bit expensive, been checked independently. By 2050 at today’s then you do not need NHS continuing care and you prices the cost of free personal care will rise to do not need to be having these complicated somewhere between £8.5 billion and £10 billion. debates. Frankly, I do not think it is an election That will be close to 1% of gross domestic product. winner. There is just no way that that is a sustainable Chairman: I am not disagreeing with you about the system. We will not go down the route of saying models at all; I entirely agree with you. But if I put we will resolve the complexities of this problem by to my Yorkshire constituents the issue that 25 years having free personal care, because it would be ago they would receive a form of care for profoundly dishonest to say it. If I said it today, absolutely nothing and now they are paying for it, some minister will have to sit here in three years’ one or two people feel a bit aggrieved about that. time telling everybody why it is being withdrawn, That is the point I was making. and I will not go down that route. Q320 Mr Amess: This is not to try and trip you up, but I am sure you would accept that the reason Q322 Mr Amess: Thank you for your frankness in Barbara Pointon got full funding was because she that regard. The other issued raised by the Pointon took the case to the Ombudsman, so the case concerned the location of continuing care and Ombudsman I would have thought in that regard whether fully-funded NHS continuing care could should be congratulated. be provided to people in their own homes. When 3012251004 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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17 March 2005 Dr Stephen Ladyman MP, Mrs Anne McDonald and Mr Craig Muir you answer that, can you san whether or not you represents Alzheimer’s suVerers and by people who are considering the issue about making direct I greatly respect—and there was one writing in The payments to these people? Times yesterday, Clare Rainer—that somehow free Dr Ladyman: First of all, NHS continuing care can personal care is a moral issue and that we have be delivered in any environment, in your own taken an ethically dubious position in having a home, in a nursing home, in a residential home with system where people have to contribute to their nursing—wherever is the most appropriate place personal care, and that those parts of the United for your care. In that, it diVers to those areas of Kingdom which have introduced it somehow have the United Kingdom where they have gone down been ethically and morally superior to us in their a free personal care route because, as I said, in judgment. What I am saying is that what we have those areas they have to maintain the long-stay got here is a sustainable position. Others can make hospitals. Mrs Pointon’s husband would not get their own judgments in the United Kingdom as to free NHS continuing care in her own home in those whether they have a sustainable position or not. We areas. Her husband would be put in a long-stay have a system which helps the poorest, we have a hospital. In that respect at least England I think is system which helps the sickest, we have a system more civilised in these matters. One of the issues we which helps the vast majority of older people and are going to have to face up to over the next 12 they get the care they need and it allows them to months that we need a lot of debate and a lot of stay at home longer than in other parts of the thinking about is this issue of the practicalities of United Kingdom. I would argue that we have saying people can have NHS continuing care in actually arrived at a position which is not only their own home. To get NHS continuing care you more sustainable but which has much to need the regular involvement of health care recommend it in certain respects, and I would like professionals and those health care professionals people to look a bit more objectively at some of the are a scarce resource. If you reached a point where decisions made elsewhere in the United Kingdom you had to have a doctor sitting in the front room in order to reflect on whether they are asking for all day in order for you to stay at home everybody something which they would pretty soon start to would say that was not realistic. There is a grey complain about if it was granted in England. That area between where it is realistic to support you in is the argument I am taking back to those people, your own home and where it is not and that is one ie do not ask for things which you may hate if you of the things we have got to debate over the next 12 got them. months, where we define that grey area. The second thing you talked about was direct payments. The Q324 Dr Naysmith: I want to ask something that law is clear, the National Health Service cannot V make direct payments. So if you receive NHS is really slightly o what we have been talking continuing care you cannot receive that through a about just recently but it is something that I feel direct payment. What I have found, which is true very strongly about and it is also something I have in Mrs Pointon’s case, is that health oYcials and a personal interest in. I ought to declare that I am local council oYcials have had to work together President of the Dementia Care Trust in Bristol which provides respite care mostly for carers in the innovatively to interpret the existing legislation in V order for her to continue to use direct payments or area round about. There is quite a di erence something close to direct payments and in order for between the councils in terms of how much money her to continue to provide for her husband’s care they are prepared to give for this service. It seems in the way that was the case before she became to me, irrespective of who is paying for overall care eligible for NHS continuing care, because we did and so on in the home, that one of the things that not want to see a disruption in his care. They have makes it more tolerable for carers, often relatives, to look after the sick people in their home is the had to work innovatively in order to stay within V the law and continue to support her in doing that. chance that they can get some time o , it may be The question is whether we should be expecting only three hours a week, which is absolutely crucial people to work innovatively in order to get round in those circumstances. I just wondered whether it the law or whether we should just change the law. is possible to try and ensure that that kind of That is something we can debate over the coming service is more widely available. months. Dr Ladyman: Absolutely. I agree with you 100%. That is why we have made the Carers’ Grant available, which from 1 April will be £185 million Q323 Mr Amess: Finally, you and I are both across England and we have said that we will keep English and I am sure when you said about that going at least until 2008 when the current England being more civilised you were not Spending Review expires. That Carers’ Grant is suggesting for a moment that Scotland and what there largely in order to pay for respite care for they decided to do was being less civilised in this people. Incidentally, it is one of the grants that are regard. not available elsewhere in the United Kingdom. It Dr Ladyman: Absolutely not. I do not know will be paid for with the money from not having whether you have noticed but my boss is Scottish free personal care and which the Liberal Democrats and I think he would have words to say if I was would have to scrap if they introduced their policy. suggesting that. The point I was making is that it I would say that £185 million is not insignificant. is constantly being put to us by the lobby which We have the carers’ strategy which requires represents older people and the lobby which councils to have plans in place to support carers 3012251004 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

Ev 88 Health Committee: Evidence

17 March 2005 Dr Stephen Ladyman MP, Mrs Anne McDonald and Mr Craig Muir with respite care. Thanks to the Private Member’s support and councils will have the same feelings Bill that was recently passed we have the Carers about whether or not they have got to the point (Equal Opportunities) Act and we have the where they just need to say that it is now a matter previous carers’ legislation on the Statute Book. for the NHS. There are judgments in there and The previous carers’ legislation means that every judgments always fall on some part of the carer in England is now entitled to their own spectrum. Some people who perhaps are caring for assessment of their needs. They can have those somebody in this condition will be saying to needs met with direct payments and they can be themselves, “I think this needs more now. We need given money to pay for their own respite care if that to move to NHS continuing care”. What we need is what they want, or they can use the vouchers that to get to is a system where councils and health some councils operate for their respite care. providers—it almost comes back to where the Because of the legislation which comes into place Chairman started us oV from—are working so on 1 April the council now has a duty to tell carers closely together that there is a smooth transition about their rights. I believe that is a package of between the two and I am not satisfied we have got support for carers—we can always do more and we to that smooth transition yet. That is one of the will look to ways to do more—in England which is things we need to try and deal with over the next going to start making some serious inroads into the 12 months. problem that you have identified because you are absolutely right, a break is the best way of Q327 Dr Taylor: I want to try and explore the helping carers. confusion between continuing care and the high band nursing contributions, but I think you said Q325 Mr Bradley: Let us go back to the Coughlan that in the letter we can have that you wrote to the case which you defined at the beginning of the Ombudsman that confusion is explored. Is that session and correct me if I am wrong when I say right? that the judgement was what was the limit of the Dr Ladyman: Yes. social care as opposed to the amount of health care. Are you satisfied that the guidance and eligibility Q328 Dr Taylor: In the longer term would you plan is clear to the various authorities, that they to merge those two systems, recognising that they understand that judgment in the terms that you are virtually indistinguishable? have expressed it and that they apply it Dr Ladyman: There are no plans to do it at the consistently? How do you monitor that moment, but we have this review going on and if we compliance? find a way which is financially sustainable, which is Dr Ladyman: Whether it is applied consistently or easier to understand from everybody’s point of not I would accept is an open question. One of the view, I am not going to take the option oV the things we have to do over the next year is get to a table. I am not going to kid you either that there point where everybody is applying it consistently. are plans to do it at the moment. What I can assure What I am confident about is that the current you is that anybody who is being assessed and who criteria all recognise that when the point comes at might potentially be in high band nursing care which social services say, “We cannot go further ought automatically to be assessed for NHS than this because it would be ultra vires for us to continuing care and a positive decision ought to go further than this under the Coughlan have been made as to why they are in one or the judgment,” NHS continuing care kicks in. So there other. is no gap between a council’s responsibilities and NHS continuing care because the NHS continuing Q329 Dr Taylor: So you will somehow make clear, care criteria in the 28 areas say something along the if there is a distinction, that there is that distinction lines of when the council leaves oV, because it is and you will describe that in detail? known they think they have no legal remit to go Dr Ladyman: Yes. We will have to do that. That further, you might be eligible for NHS is a minimum requirement that needs to come out continuing care. of the process that we go through over the next 12 months. Q326 Mr Bradley: And you are satisfied that that trigger mechanism is actually happening in the way Q330 Chairman: One of the issues that I have that you are describing it and that they are not learned something from in this inquiry is that making that positive judgment about that overlap there are certain incentives towards increased to trigger the NHS continuing care? dependency built into the system. We have had Dr Ladyman: I am satisfied that people understand evidence from the Royal College of Nurses where that there is a point beyond which councils cannot they were suggesting that there is a need for the go and then NHS continuing care becomes the eligibility criteria to be reformed to reflect a change priority. Where I am worried is that these issues are in emphasis on rehabilitation. They said, not black and white. When you are supporting “Currently the criteria focus on the level of a somebody in a family that has a complex patient’s dependency. This creates a perverse condition—even in the best systems things are incentive whereby if a patient’s condition improves slightly chaotic—it is diYcult to make judgments the level of funding available decreases.” Is that about whether all their needs are being met. You something that you are conscious of and is it would always want to do more and give them more something that you might be able to address? 3012251004 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

Health Committee: Evidence Ev 89

17 March 2005 Dr Stephen Ladyman MP, Mrs Anne McDonald and Mr Craig Muir

Dr Ladyman: I had not thought about it in those Dr Ladyman: Do I acknowledge that some nursing terms, but what I am absolutely committed to is homes have put their fees up in order to exploit helping people maintain their independence. I self-funders? I have no doubt that has happened. believe that the way we have adult social care and some aspects of health care structured in this Q333 Dr Naysmith: What can we do about it? country at the moment encourages dependency Dr Ladyman: Anybody who is in a nursing home instead of independence. The Green Paper will and contributing to their own costs should insist on make it absolutely clear that we need a radical having a clear invoice for the services that are being transformation of social care in this country in provided to them and those services must clearly order to support independence and to do far more distinguish between their board and lodging, their to support people’s independence. I made a speech personal care and their nursing care and must yesterday in Leeds and in it I said that one of the demonstrate that they are not being asked to pay things we also have to do is to get away from this anything towards their nursing care. If people notion that dependency and independence are at believe that they are being asked to pay anything opposite ends of the spectrum. We are all towards their nursing care then they ought to dependent on something. I am not independent and complain to the manager of the home or, failing you are not independent, Chairman. We rely on that, to the local social services department or the other people to do things for us, whether it is Commission for Social Care Inspection. Nursing emotional support, whether it is having the council care is delivered free by the National Health Service take away our dustbins, whatever it is. We are part and we reimburse nursing home owners for it. If of society. We are dependent on each other. anybody has any reason to suspect that they are Nobody is completely independent. People who are paying for their nursing care then they need to frail or who have disabilities are never going to be complain and the Commission needs to address completely independent just like the rest of us. that. They may need other types of support in order for them to be able to support an independent life as Q334 Dr Naysmith: That is a very clear statement. far as it is possible to do that, and that radical Is it right to put the onus on the frail residents, transformation of adult social care which I am some of whom do not have relatives who can fight going to be publishing next week talks about a shift their battles for them? Should it not be spelt out by over the next generation in the way we deliver care the Department to the nursing home owners that and our attitudes to care and the way we assess risk this should be provided to everybody before they and how we try and eliminate risk at the moment come in? when actually risk is quite often what brings quality Dr Ladyman: It is. Standards of information to into our lives. It talks about how we can help people are dealt with in the National Minimum people stay at home more and, if they are not going Standards and we have just announced that we are to stay at home, how we can help them maintain going to review the National Minimum Standards independent attitudes and how we can be more over the next year or so. During the course of that proactive about helping them to maintain their review we will need to monitor how successful we health and physical prowess. I hope all of these are being at insisting on this because once it is in things you will see in the Green Paper when it the National Minimum Standards then the comes out. Commission for Social Care Inspection should be automatically inspecting whether the care homes Q331 Chairman: And you will look specifically at are following this rationale. the way the banding is aVected? Dr Ladyman: Absolutely. Q335 Dr Naysmith: I am not quite clear what you Chairman: It does strike me as a very perverse are saying happens now that enables you to say situation. If it is working in that way then we would confidently that it should happen. have to look at it. Dr Ladyman: The National Minimum Standards set out what is expected in terms of information to people who are in care homes and the Commission Q332 Dr Naysmith: Minister, when we were should be inspecting that those standards are being looking into delayed discharges a couple of years met. Let me pluck some figures out of the air. Let back the then Minister and the Chief Inspector of us say there were some people who were self- Social Services both said to us very clearly that the funding in those nursing homes who were paying money that was provided through the registered £600 a week for residential care with a nursing nursing care contribution should benefit directly contribution on the top and along came the the residents for whom it was intended; in other National Health Service who said, “We will pay the words, they should get the money and notice a cost of the nursing care which is £150.” What diVerence. You will know, because I have written should have happened is that those residents’ bill to you a couple of times on the subject and I have should have fallen to £500. Some care home not been too happy with the reply, that quite often owners, I have no doubt from the letters I have seen in that situation all that happens is the home takes from colleagues and from my own constituency, the extra money and there is no benefit to the took the opportunity of saying, “If that resident resident. What can we do about this? Are you could previously aVord to pay £650 a week and happy with that situation? now they are only having to pay £500 a week then 3012251004 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

Ev 90 Health Committee: Evidence

17 March 2005 Dr Stephen Ladyman MP, Mrs Anne McDonald and Mr Craig Muir

I am safe in putting up my residential costs to £600 outset, people who were carrying out assessments a week because I know they’ve got the money in in good faith back in 1995 could not have had any the bank to pay it.” So they immediately inflated possible idea that in 2005 we would want to go their residential costs to take advantage of the fact through those records again and double-check their they knew there was an extra contribution being decision. How long do we expect people to keep made. As soon as this was realised—and this was these records for? That is something that we may prior to me becoming a Minister—instructions need to consider. were immediately given by the Department, by my predecessor, about the standard of information and Q339 Dr Naysmith: Is three years long enough? invoicing and the other measures that should be put Dr Ladyman: If they had been given an instruction in place to stop this happening in the future. that they should keep records for three years back Whether it did eliminate it completely is a judgment in 1995 we would have had all hell to pay now call. Steps were taken immediately to try and stop because we would have done none of these reviews it happening as soon as it was realised it was and we would have had no records for any of these happening. people. On that basis you could argue three years is not enough. On the other hand, to expect us to Q336 Dr Naysmith: Let us return to the question keep detailed health and financial records on every of the retrospective review. There is a lot of person receiving health or social care for longer evidence that it has favoured the articulate and the than three years is going to create a huge well-informed and that perhaps people who might administrative overhead. It may be that the have been entitled to payments have somehow or National Programme for Information Technology other escaped the net; the trawl for people has not can help us here and this is one of the things that we been as suYcient as it might have been. Would you will have to look at because we will have electronic agree with that? I know we talk about leaflets being record keeping of everybody in the health care put out and lunch clubs. system in the future. I suspect the civil liberties Dr Ladyman: It is an easy charge to make but it is groups will be knocking on our door wanting to adiYcult one to gather evidence for. Certainly we discuss how long we keep these records for, but if did ask strategic health authorities to carry out a we decide we do want to keep them then at least trawl of people who they think might have been it might give us a practical way of storing this wrongly assessed and they should have done it information for longer. automatically. I would be surprised if we have caught everybody in the net, but we tried. It may Q340 Dr Naysmith: Finally, we understand the be that some people who passed away and who Department has taken the decision that successful have not got relatives to have checked on this and claimants will only be refunded money for the to have read the newspapers should have been actual costs they incur perhaps with adjustments reassessed and their estate reimbursed and that may for inflation, but there is no question of not have happened. Certainly instructions were compensation for things like loss of homes or given to carry out a trawl to try and do it as well people giving up their jobs which you heard about. as we could, but this is an imperfect world. Do you think that is fair? Dr Ladyman: Absolutely. I can understand why Q337 Dr Naysmith: Did the Department consider people may have some concerns about it. The vast reviewing all records of continuing care from 1996? majority of the £180 million in compensation has I know you were not at the Department then, but not gone to helping the individuals themselves; the was that something that was considered? vast majority of that money has gone into people’s Dr Ladyman: I think we would have to go back and estates. If I was to say we will have compensation consult our records to see how thoroughly that was for people who sold a house and the price of that considered at the time and drop you a line and house went up, where does it stop? Somebody tell you. could come to me and say, “I was intending to invest this money in lastminute.com. I want to be Q338 Dr Naysmith: One of the things that have a millionaire now please”. Every penny that we pay contributed to the confusion, as we were hearing in this compensation is coming from your local earlier on, is the lack of suYcient good quality hospital and my local hospital and everybody else’s records. Is that something that you really want to local hospital. There is not some pot of money that put right through a review of the standards and the Chancellor can give to me that was not being regulations exercised by the Commission for Social earmarked for anything else; it comes out of the Care Inspection related to care homes? Is that the National Health Service budget. It is right that route that you intend using to make sure that this people get what they deserve. The principle that we does not happen in the future? have chosen is one of unjust enrichment. It is the Dr Ladyman: The Commission should be checking principle that we believe would have been chosen people’s record keeping. The single assessment if the matter had been decided in a court. We process should be improving the record keeping. provide the money that we would have provided at Maybe one of the things we will have to do over the time plus the Retail Price Index in order to deal the next 12 months is ask ourselves the question with inflation issues, but that is the limit of it. how long after somebody’s death we should keep People are campaigning for us to give greater these records for. As I said to the Chairman at the compensation. Let us put this on the record 3012251004 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

Health Committee: Evidence Ev 91

17 March 2005 Dr Stephen Ladyman MP, Mrs Anne McDonald and Mr Craig Muir because this has not been stated clearly in public Q343 Dr Naysmith: I am sure the Ombudsman will yet. We have not asked people to repay the benefits have heard what you have had to say. that they were claiming when they were being Dr Ladyman: I am sure the Ombudsman will have denied NHS continuing care and they would not heard it. I have had this conversation with her and have got those benefits if they had been getting my oYcials are having this conversation with her NHS continuing care. We have not asked councils and we will continue to have it. to recover the money that they were paying towards people’s social care costs and they would Q344 Jim Dowd: It was put to us last week by Mrs not have received any of that money at the time if Pointon and by others yesterday in the lobby that they had been receiving NHS continuing care. They care can be defined by those who give it rather than would not have got the attendance allowance if the actual care that is being provided and they were getting NHS continuing care. We have judgments are made on the basis of that. That is not asked them to repay that. Some of the people the perception. Are you satisfied that that is not did not pay a penny towards the care and they have happening and that the distinction is about what now got compensation because their local councils care is provided rather than who provides it? paid all their care costs and at the point when they Dr Ladyman: Absolutely. If you are talking about would have got NHS continuing care the NHS the eligibility criteria for NHS continuing care, would have taken over the bills. The NHS has had clearly that includes the involvement of health care to compensate those people even though not one professionals. So to that extent it is defined by the penny came out of their pocket at the time and we people who provide that care because if anybody are not asking for any of that to be recovered. could provide that care they are obviously not Those people are saying to me I should take health care professionals and therefore you may be hundreds of millions of pounds out of the NHS to eligible for NHS continuing care. This is a complex pay people for houses that they may have had to argument. What I think Mrs Pointon’s case has sell at the time—and nobody has had to sell a house demonstrated very clearly is the benefit of direct since 2001—and a lot of it will just be wasted payments, because when Mrs Pointon’s husband money. If we were to assess all the benefits we could was being supported by social services the care claim back I do not think they would be any better package that they tried to provide directly was not oV anyway. adequate for her husband’s needs, it did not meet the flexibility that she expected for her husband. She then moved on to direct payments where she Q341 Dr Naysmith: It sounds a bit like a field day is organising the care herself and immediately the for lawyers. standard of care was improved because she was in Dr Ladyman: That is why we are sticking very control of it. That is exactly why when we produce clearly to the position that we believe is the one the the adult social care Green Paper next week we are courts would have decided if it had ended up in going to be saying direct payments for many people the courts. are the way to go and we need to do more to encourage people to use those direct payments. The issue that I was talking about in answer to Q342 Dr Naysmith: I think the Ombudsman is questions by Mr Amess then comes into play, ie if pursuing the question of further compensation. you become entitled to NHS continuing care you Dr Ladyman: The Ombudsman is reviewing it. One are no longer allowed to organise the care yourself of the things I would make clear to the through direct payments and therefore you have to Ombudsman is that ultimately her duty is to judge have a system of care imposed on you. That is an whether maladministration has taken place. Her issue that we have got to sort out somehow. I have duty is not to try and impose her political judgment met Mrs Pointon, she has come to my oYce and I over mine. I have made my judgment that we are have had meetings with her to discuss her case and working in a legally compliant way. I think we can the way that her care was organised and the defend that to her. I have made my judgment that experience that she had and I entirely agree that we it is not a good use of National Health Service need to do better about the way we provide care resources to compensate people for all sorts of and that is what I hope next week is going to be other things on top of what they are entitled to. The all about. thing I would ask her to consider when she is reviewing this is to do some sums and balance the Q345 Chairman: Mr Muir, I am conscious we have benefits that we could have claimed back from not included you at all. You have a very competent people with the potential extra that they may have Minister beside you. Is there anything you would got because of the price of a property going up over like to add? a period of time; the two are pretty near the same. Dr Ladyman: He has been passing me lots of notes! Do we really want to be spending another five years Mr Muir: I do not think I need add anything, going back through all this again working out what thank you. property prices were? Incidentally, if property Chairman: Minister, we are most grateful to you prices are the issue, are those people who sold their and your colleagues for coming along this morning. property before the property market went down I am conscious that this could be the last public going to give the money back to the NHS? I do not meeting of the Committee before a General think so. Election. As I will be disappearing in the election 3012251004 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

Ev 92 Health Committee: Evidence

17 March 2005 Dr Stephen Ladyman MP, Mrs Anne McDonald and Mr Craig Muir

I would like to place on record my thanks to the you have displayed genuine convictions. It has been Department for co-operating with various an honour and a good laugh to be a member of this inquiries. I would also like to thank the staV of the Health Select Committee and your part in making Committee for the excellent support they have our proceedings so valuable has been absolutely given me over many years, our specialist advisers splendid. I know that I speak for my colleague in this inquiry and many others and, in particular, when I say that we do wish you and your family my colleagues, friends and members of the well for the future. Committee for their support. It has been an Q346 Chairman: Thank you very much. enormous privilege to chair this Committee and I Dr Ladyman: On behalf of the Department of hope we have made a bit of a contribution to Health and the Government, may I also thank you improving things. for your chairmanship of this Committee. You Mr Amess: I think there is someone in the audience have not always been a comfortable partner and who has come ready with musical instruments occasionally you have come up with advice that we perhaps to strike up a fanfare. I just simply want did not agree with, but we have always known how to place on record that throughout the two importantly you take these issues and we thank you Parliaments that you have chaired this Committee for your eVorts. you have demonstrated yourself to be firm, fair and Chairman: Thank you very much.

Supplementary evidence by the Department of Health (CC 9A)

Case Finding

1. Following the Health Select Committee hearing on the 17 March, Dr Stephen Ladyman promised to send a note to the committee on the proactive eVorts undertaken by SHAs to identify cases where a wrong decision about continuing care funding may have been made in the past. 2. The Department issued a template to SHAs which called for SHAs to identify cases since 1996, and all SHAs have followed this advice: — All cases brought to the attention of the SHA/PCT should be reasonably investigated. — In line with the Ombudsman’s report SHA/PCTs should take steps to identify other cases since 1996. It is for NHS bodies locally to decide what is reasonable and proportionate action to make people aware of the review process. But a reasonable approach may include contacting local care homes, local groups (such as Age Concern) who produce newsletters or advice lines, and publicise through any other means the fact that this review is taking place. This may include, where appropriate, an approach to specific individuals. In addition, where criteria were clearly not consistent with the existing law and the Coughlan judgement, to identify any patients who asked for review and were turned down, so that their case can be re-examined. 3. All SHAs undertook advertising and publicity in order to raise awareness of the restitution process. Local publicity by SHAs has brought restitution to the attention of a significant proportion of those who had funded their own care, or their families. This group are those who stand to receive financial benefit from undergoing the extensive review process. Those who were funded from the public purse (around 70% nationally) would see no benefit in undergoing the often painful and stressful review process, while some others who were deceased may not have had heirs who were willing or able to pursue restitution. 4. All living individuals in care homes providing nursing care are subject to reviews by the NHS and so should have had their case looked at again since the beginning of the restitution process. Social service departments have been well aware of the review process and able to identify individuals who they support, who may need to be reconsidered. 5. At least one SHA undertook some further “case finding” by examining records and following up individuals where there appeared to be a chance of a wrongful decision. In one SHA this identified a further 1,000 cases and only 20 of these cases were worth taking further. Of these 20 cases only a very small percentage were eligible for relatively small amounts of restitution. The cost to the NHS of these investigations, particularly where the recipient is deceased, outweighs the slight possibility of a small amount of recompense being owed to a very small number of deceased individuals, assuming that the next of kin and their records are traceable. 3012251006 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

Health Committee: Evidence Ev 93

COPY OF A LETTER FROM THE DEPARTMENT OF HEALTH TO THE OFFICE OF THE HEALTH SERVICE OMBUDSMAN (CCB) 7 March 2005

Dear

Continuing Care Funding and Registered Nursing Care Contribution Thank you for your letter of 2 February. I’m sorry for the delay in replying—as you know I was on jury service till mid-February. We certainly agree with your analysis of how continuing care and the Registered Nursing Care Contribution (RNCC) fit together, as is shown in the following paragraphs from the 2003 guidance on NHS funded nursing care (and this is emboldened in the actual guidance):

The Links with NHS Continuing Care 18. Regardless of the eventual setting in which an individual is likely to be cared for, in carrying out a joint assessment of an individuals’ needs, the first consideration should always be the extent to which that person meets, or does not meet, the criteria for NHS continuing healthcare. 19. This must be done on a case-by-case basis, looking at all the individual’s needs—for medical and nursing care as well as therapeutic and personal care. NHS funded nursing care is part of a spectrum of care, where people need a mixture of nursing and social care. It is diVerent from, and is not a substitute for, fully funded NHS continuing care, where a person’s health needs will be beyond the scope of what can be provided through NHS funded nursing care. You also asked about the background to the NHS funded nursing care policy. Following the Coughlan judgement and the Royal Commission on Long Term Care, it was recognised that there was a group of nursing home1 residents, who were not entitled to full funding by the NHS but who were receiving the services of a registered nurse. The policy of “NHS funded nursing care” was to correct the anomaly that this group of care home residents were charged for the services of a registered nurse on a means tested basis. The purpose of section 49 of the Health and Social Care Act 2001 was to separate out the services of the registered nurse from the rest of the care which could be provided by social services in a nursing home and ensure that it was funded by the NHS. An assessment by the NHS of the need for the services of a registered nurse is the means to access this care (or NHS funding for the care). The decision by Ministers in England was that this assessment (and payment) should include a measure of the need for the services of a registered nurse. In Wales, however, the assessment was a simple yes/no decision, which triggered a flat rate payment towards the nursing home fees. A workbook was developed by nursing professionals, based upon professional judgement and work already done by the Royal College of Nursing, to determine the level of need for services from a registered nurse. This was not a full assessment, but only concerned with determining the level of input from a registered nurse. The determination of the need for care from a registered nurse, the RNCC, was rolled out through a training programme in September 2001. At that time it was made clear that this “determination” was only relevant for nursing home residents who had already been assessed as having a need for care which could be met by social services ie that they had already been assessed as ineligible for care fully funded by the NHS. The workbook reiterates this point. So the RNCC was a means of determining the NHS’s contribution to a joint package of care, where it was already clear that the NHS was not fully responsible for the care, but the services of a registered nurse were required. If the care had been provided in the person’s own home or a residential home this would have been met by the community nursing service, but since it was provided in a nursing home which already employed registered nurses, the NHS provided a proportion of the fees. The amount paid was based on the assessment of the level of need for care from a registered nurse ie. “high”, “medium” or “low” banding. Another way of describing this would be “above average”, “average” or “below average” need for input from a registered nurse to a package of care in a nursing home, a package of care which was not entirely the NHS’s responsibility (and did not meet the criteria for fully funded NHS care). From research that was available at the time we knew that a resident received on average an hour per day of input from a registered nurse. At the time this was introduced in October 2001 there were 42,000 nursing home residents who were funding their own care in nursing homes. These may or may not have had an assessment for fully funded NHS care in the past, but the training was clear that the RNCC determination should not be carried out until eligibility for fully funded care had been considered and it was decided that the individual was not entitled to fully funded NHS care. In April 2003 a further 90,000 nursing home residents, who had previously been assessed and funded by social services, were assessed in a similar way.

1 I will use “nursing home” throughout as this was the nomenclature at the time, of course they are now known as “care homes providing nursing care”. 3012251006 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

Ev 94 Health Committee: Evidence

All these residents should receive regular reviews (three months after first entry to the home and then at least annually), and additionally on request, from either the home or the individual/family, if the resident’s condition changed significantly. As the understanding and focus on fully funded NHS continuing care has increased over recent years, confusion at a local level has arisen. This has been identified through your investigations and Melanie Henwood’s report. This seems to be due to the diVerent nature of the approach at the two stages (assessment of total need for care and determination of need for input from a registered nurse), the use of the word “nursing” to mean diVerent things, and some misreading of certain paragraphs of the guidance. Overall there seems to be a lack of understanding that the decision on full funding by the NHS must come first, before the decision on the amount of input from a registered nurse becomes necessary. When the Minister, Stephen Ladyman, announced the work to develop a national framework for NHS continuing care he made it clear that this should include NHS funded nursing care. Also the development of the Single Assessment Process, and ensuring all aspects of care needs are taken into account through that process, has already been identified as the way to make sure the process is handled correctly and consistently. This will be the opportunity to clear up confusion and there could be options for a significant change to the interface between NHS funded continuing care and NHS funded nursing care. However, this change will follow Ministerial decisions, public consultation and careful implementation to ensure that any changes for individual care home residents are not disadvantageous or uncoordinated. It will therefore take some months. In the short term I have already indicated to SHAs that we will be asking them to confirm that all PCTs are now following the correct procedure (ie making the decision on full NHS funding before considering a RNCC determination); and put in place a series of reviews to ensure that residents in the high band (between 15,000 and 20,000 people nationally) have been clearly assessed against the criteria for full funding. As we have discussed it would be very helpful if your team could help us with documenting practice which distinguishes between the two sets of criteria, and practice which must be avoided if correct decisions are to be made, in order to assist PCTs and SHAs in reviewing these cases. I hope this is helpful and would welcome further discussion on how we can work together to clarify matters and ensure the system works as it should do for all individuals.

Supplementary memorandum by the Parliamentary and Health Service Ombudsman (CC 23A) I write following the Health Select Committee meeting of 17 March 2005, which my Deputy, Trish Longdon, attended, along with Colin Houghton, Head of the Continuing Care Team. Once again, I would like to apologise for not being able to appear before the Committee personally. Thank you for your understanding on this issue. I believe that the Committee requested some further information and I am pleased to respond. You asked us to provide you with some additional information on the regional spread of the continuing care cases which we are currently investigating. I attach a breakdown by Strategic Health Authority (SHA) of the cases in hand. You will see that all SHAs are included and that the complaints against each which we are currently dealing with range from one to 92. However, as I know my Deputy pointed out, it is diYcult to draw conclusions from this data. My oYce is demand led; the absence of complaints cannot be taken to suggest good practice, or vice versa. The number of complaints may, for example, simply reflect local publicity or an active advocacy service. Below, I cover four examples of good practice in diVerent bodies. You also sought examples of good practice in handling applications for full NHS continuing care funding. These are:

Greater Manchester SHA — strenuous eVorts to obtain all available evidence; — good level of relative/carer participation encouraged; — full list of panel members considering applications; and — detailed explanation for decisions.

Avon,Gloucestershire &Wiltshire SHA — clear, easy to understand process; — carers/relatives involved at all stages; — excellent leaflet and policy documents: available on their web-site; 3012251007 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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— continuing care leads at the SHA have firm grip on, and understanding of, purpose and procedures, and have taken full ownership of the entire process; and — very robust appeal process: prepared to overturn PCT decisions on the merits of each case.

North Norfolk PCT — full consideration of all time-frames for all patients.

South West Peninsula SHA — appeal panel invites carers/relatives to attend; and — detailed records of panel discussions kept. I would also like to take the opportunity to clarify one of Colin Houghton’s answers to the Committee. When asked if he thought there should be one assessment tool, he agreed. I would like to make it clear that he should have said that there should be a single set of assessment tools, as set out in my retrospective report on continuing care. I am sorry if this was not clear during the evidence session. Finally, there was an exchange about the reliability of information given to me by the Department of Health in late 2003 and early 2004. To avoid any confusion, I refer to the statement I made in my recent report (page 4, paragraph 5): “Although we had indicated in our report in February 2003 that ‘significant numbers of people and sums of money are likely to be involved’, the large scale of applications for retrospective review and restitution was unexpected. In view of this, the Department of Health extended the deadline for dealing with them to 31 March 2004. We passed on to the Department of Health early concerns that we had heard from NHS bodies about diYculties in meeting both the December and March deadlines. However, on both occasions the Department assured us that their information showed the targets would be met and we passed on these assurances to complainants, their representatives and Members of Parliament. It became evident that the Department’s information was unreliable. It was very disappointing that in September 2004 the Parliamentary Under Secretary of State for Community reported that only 57% of the retrospective reviews (6,644 out of 11,655) had been completed by the extended deadline of the end of March 2004. This prompted a flood of complaints to us—mainly from frail, elderly people who were themselves carers or from their relatives—about delays in receiving a decision.” March 2005

IN HAND CONTINUING CARE CASES

Avon, Gloucestershire and Wiltshire Strategic Health Authority 30 Bedfordshire and Hertfordshire Strategic Health Authority 13 Birmingham and The Black Country Strategic Health Authority 21 Cheshire and Merseyside Strategic Health Authority 92 County Durham and Tees Valley Strategic Health Authority 5 Cumbria and Lancashire Strategic Health Authority 42 Dorset and Somerset Strategic Health Authority 43 Essex Strategic Health Authority 27 Greater Manchester Strategic Health Authority 33 Hampshire and Isle of Wight Strategic Health Authority 9 Kent and Medway Strategic Health Authority 19 Leicestershire, Northampton and Rutland Strategic Health Authority 18 Norfolk, SuVolk and Cambridgeshire Strategic Health Authority 5 North and East Yorkshire and Northern Lincolnshire Strategic Health Authority 22 North Central London Strategic Health Authority 10 North East London Strategic Health Authority 21 North West London Strategic Health Authority 13 Northumberland, Tyne and Wear Strategic Health Authority 12 Shropshire and StaVordshire Strategic Health Authority 22 South East London Strategic Health Authority 9 South West London Strategic Health Authority 9 South West Peninsula Strategic Health Authority 39 South Yorkshire Strategic Health Authority 16 Surrey and Sussex Strategic Health Authority 29 Thames Valley Strategic Health Authority 13 Trent Strategic Health Authority 52 West Midlands South Strategic Health Authority 1 West Yorkshire Strategic Health Authority 21 3012251008 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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Correspondence between Ms Anne McDonald and the OYce of Parliamentary and Health Service Ombudsman (CC 23B)

CONTINUING CARE FUNDING AND REGISTERED NURSING CARE CONTRIBUTION I am writing to seek your clarification and comments on the issue of high band Registered Nursing Care Contribution (RNCC) and full NHS continuing care funding (NHS CC). As you are aware, from Melanie Henwood’s report and from the Ombudsman’s follow-up report on NHS funding for long-term care (HC 144, 16 December 2004), there has been considerable confusion across strategic health authorities and trusts as to the relationship, if any, between RNCC and NHS CC. This is not a theoretical issue. We have a large number of complaints where the patient has been found to fulfil the requirements for the high band of RNCC, but the complainants argue that NHS CC funding should have been granted. We are “parking” these complaints for a short period, rather than launching a series of investigations against trusts and health authorities, in the expectation that we can clarify matters with you and agree a way forward. Our view, confirmed by independent legal advice, is that NHS CC and RNCC are two completely separate funding systems. This is made clear by a number of statements contained in various directions concerning both continuing care and free nursing care. Circular HSC 2001/015: LAC (2001) 18 (“Continuing care, NHS and Local Councils’ Responsibilities”), paragraph 10 states: “10. Section 49 of the Health and Service Care Act 2001 will remove from local councils the responsibility for providing nursing care by a registered nurse. Directions will require the NHS to take responsibility for such care in the future, including those currently self-funding their care. Guidance on this will be issued over the summer, with the introduction of free nursing care from October 2001. None of this guidance will alter the NHS’ existing responsibility to provide a full package of NHS services where there is a primary health need.” This later Guidance, concerning the introduction of free nursing care (HSC 2001/017: LAC (2001) 26), contains a similar statement at paragraph 9: “9. The directions relate only to nursing care as defined in section 49 of the Health and Social Care Act 2001 [care by registered nurses]. They do not relate to any other kind of care. In other words, the obligations of the NHS in relation to other types of care (including other types of nursing care) remain.” This statement is again made in the “NHS Funded Nursing Care Practice Guide and Workbook”. Paragraph 1.7 states (in bold print): “1.7 These responsibilities [for continuing NHS health care] will remain unchanged; the requirement to fund the registered nursing care of people in care homes will not reduce the need to also make provision for continuing NHS health care.” The message should, therefore, be clear: the provision of free nursing care (RNCC) has no eVect on other rights to the provision of free care that a person may have. Given the respective benefits of NHS CC over RNCC, it is equally clear that a person in need of ongoing health care should first be assessed for NHS CC eligibility. If found eligible, the assessment process stops there and RNCC considerations are unnecessary. If, however, a person is not eligible for NHS CC, a separate assessment of their need for care by a registered nurse (the RNCC assessment) is normally warranted. I know from our informal discussions on this issue that we agree that this is the correct approach. However, from the complaints we have received, it is apparent that many trusts are carrying out the two assessments in reverse. They are first determining whether a patient is eligible for RNCC, and if so, at what band. They then assess NHS CC eligibility, disregarding those nursing needs that have led to the RNCC banding. Consideration of the entirety of an individual’s health needs is therefore absent when NHS CC is assessed. The result is that many people are not being properly considered for continuing care funding. Where we see this wrong approach, we are writing to the trust or strategic health authority and requesting a re-review, with the right approach. Again, I think you will have no diYculty with this, and indeed I think you have pointed strategic health authorities towards the right approach. A common expression of this mistaken prioritisation of the RNCC assessment over a NHS CC assessment derives from the wording of the Coughlan judgment. At paragraph 30 of the Coughlan judgment, the Court of Appeal expressed its view of the nursing care that could lawfully be provided by a local authority as part of its social care package: “(e) The distinction between those services which can and cannot be so provided is one of degree which in a borderline case will depend on a careful appraisal of the facts of the individual case. However, as a very general indication as to where the line is to be drawn, it can be said that if the nursing services are: — merely incidental or ancillary to the provision of the accommodation which a local authority is under a duty to provide . . . 3012251008 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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— of a nature which it can be expected that an authority whose primary responsibility is to provide social services can be expected to provide, then they can be provided [by local authorities as part of a social care package].” The rationale that is given to many complainants for refusal of full funding is some version of the following: “Because care that is being delivered by registered nurses is no longer being provided by local authorities (but funded by the NHS through RNCC), this care no longer goes into the equation as to whether the overall nursing provision is more than merely incidental or ancillary to the provision of accommodation.” In other words, a person’s needs for registered nursing care do not count towards eligibility for NHS CC funding as that aspect of care is already funded through RNCC. I would appreciate your agreement that that approach is also wrong. A further and most serious consequence of this mistaken approach is that it allows, and indeed encourages, individuals with high levels of health care need to be assessed at high band RNCC rather than as eligible for NHS CC funding. It seems to us, and is supported by our legal advice, that if a person’s needs for registered nursing care are deemed to be at high band RNCC level, it is diYcult not to say that that person should also be eligible for NHS CC funding, given the similarity of the wording. I explain this further below. The Department of Health Guidance HSC 2001/015 sets out, at Annex C, the key issues that health authorities should consider in establishing their eligibility criteria for NHS funded continuing care. The ones most relevant for these purposes are paragraphs 2–4: “2. The nature or complexity or intensity or unpredictability of the individual’s healthcare needs (and any combination of those needs) requires regular supervision by a member of an NHS multi- disciplinary team, such as the Consultant, palliative care, therapy or other NHS member of the team. 3. The individual’s needs require the routine use of specialist health care equipment under supervision of NHS staV. 4. The individual has a rapidly deteriorating or unstable mental, physical or mental health condition and requires regular supervision by a member of the NHS multi-disciplinary team, such as the Consultant, palliative care, therapy or other NHS member of the team.” Although the wording of Annex C paragraph 6 and paragraph 22 of the main guidance could be read to exclude nursing care need alone from NHSCC, these paragraphs sit most unhappily with the three paragraphs just quoted which would seem to include it. As you are aware, despite the inherent contradictions, these key issues have become the eVective eligibility criteria for strategic health authorities across the country. There is much confusion over whether intensity of health care need alone, ie without complexity or unpredictability and therefore capable of being met by nurses alone, can qualify a person for NHS CC. This seemingly stems from paragraphs 22 of HSC 2001/015 and 6 of Annex C where it is stated that a need for care from a registered nurse alone is not suYcient reason for receiving continuing NHS health care. Our interpretation of these paragraphs is simply that supervision by a registered nurse does not, on its own, mean that someone should receive NHS continuing care; their health needs still have to be suYciently complex, intense or unpredictable. These paragraphs are not saying that a need for nursing care alone, regardless of how intense, can never qualify a person for NHS CC. This follows from our understanding of the Coughlan judgment: it established that intensity of health care need alone can establish eligibility for NHS continuing care. This is reiterated in paragraph 2 of Annex C, quoted above, that lists “nature”, “complexity”, “intensity” and “unpredictability” as alternatives, not as cumulative factors, ie meeting only one is suYcient to qualify for NHS continuing care. It would, however, be helpful if you could confirm that this is also the Department of Health’s understanding. By contrast, the accompanying Guide and Workbook to HSC 2001/017: LAC (2001) 26 describes the needs for registered nursing care people must have to qualify for high band RNCC at paragraph 3.8:

“The High Band 3.8 People with high needs for registered nursing care will have complex needs that require frequent mechanical, technical and/or therapeutic interventions. They will need frequent intervention and re-assessment by a registered nurse throughout the 24-hour period, and their physical/mental health state will be unstable and/or unpredictable.” This definition does not allow for complexity, intensity and unpredictability of health care needs to be alternative types of qualifying need. Rather, a person must have “complex needs”, and their physical/mental health state must be “unstable and /or unpredictable” in order to receive high band RNCC. A person must therefore either have complex and unstable, or complex and unpredictable health care needs. This, in itself, appears to create a higher threshold of health care need than would qualify a person for NHS CC. 3012251008 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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In addition, however, a person will also need “frequent intervention and re-assessment by a registered nurse throughout the 24-hour period” (my emphasis). This again appears to be a higher threshold than for continuing care eligibility, where the healthcare needs must only be such that they require “regular supervision by a member of an NHS multi-disciplinary team”. Of course, a registered nurse could be a member of the NHS multi-disciplinary team. Consequently it is diYcult to see how a person with healthcare needs that properly place him or her at high band RNCC would have even reached the stage of an RNCC assessment had he or she been properly assessed for NHS CC. This is because the level of health care needs that warrant high band RNCC would seem to be, at the least, equivalent to those that should qualify a person for continuing care funding, if not higher. It would seem to us therefore that a person properly assessed for nursing needs and in receipt of high band RNCC, on the basis that the person has intense nursing needs and/or complex nursing needs, would qualify for NHS CC funding. It is our view that the threshold for high band RNCC was set at such a level that confusion with NHS CC was inevitable, and that injustices will continue to occur without urgent action to clarify matters. The current situation has worked to the disadvantage of many old and vulnerable people and their relatives who, as a result, have been wrongfully refused continuing care funding. Due to our concerns about the compatibility of high band RNCC with refusals of NHS CC, we placed on hold the further consideration of complaints where the aggrieved was in receipt of high band RNCC. Having now considered this matter further, and taken advice from Counsel, we ask that the Department provide urgent clarification as to the intention behind the words quoted above, and clarification as to how you require practitioners to distinguish between eligibility for high band RNCC and eligibility for NHS continuing care funding. Upon receiving that clarification, the Ombudsman may then seek further advice from Counsel as to the legality of that approach and the decisions made by trusts and strategic health authorities in complaints we are holding and decide how we should proceed on the complaints we have on this matter. This could be by launching a series of investigations against trusts and authorities, or, preferably, by us agreeing a way forward on the matter strategically, and resolving the complaints en bloc (for example by asking trusts and strategic health authorities to agree NHS CC for these meeting high band RNCC or to reassess patients for NHS CC using your new advice and guidance). I appreciate that you may need to take your own legal advice on this matter, but given the number of complaints that we are holding where potential maladministration rests on this issue, I should be grateful for an early response. I am happy to meet you and your colleagues to discuss this issue if you think that would be helpful. However, that should be with a view to moving swiftly to a statement from you giving your interpretation, clarification and guidance on practice on this issue.

Further supplementary memorandum by OYce of Parliamentary and Health Service Ombudsman (CC 23C) In her evidence to the Committee on 17 March 2005 Trish Longdon said that: “we were misled as to the timeliness of reviews”. I wrote subsequently, on 22 March 2005 to clarify the position by referring to the statement in our follow up report: “Although we had indicated in our report in February 2003 that ‘significant numbers of people and sums of money are likely to be involved’, the large scale of applications for retrospective review and restitution was unexpected. In view of this, the Department of Health extended the deadline for dealing with them to 31 March 2004. We passed on to the Department of Health early concerns that we had heard from NHS bodies about diYculties in meeting both the December and March deadlines. However, on both occasions the Department assured us that their information showed the targets would be met and we passed on these assurances to complainants, their representatives and Members of Parliament. It became evident that the Department’s information was unreliable. It was very disappointing that in September 2004 the Parliamentary Under Secretary of State for Community reported that only 57% of the retrospective reviews (6,644 out of 11,655) had been completed by the extended deadline of the end of March 2004. This prompted a flood of complaints to us—mainly from frail, elderly people who were themselves carers or from their relatives—about delays in receiving a decision.” The Committee has asked whether assurances were given by Ministers or oYcials. Specifically: — Sir Nigel Crisp wrote to me in April 2003 to say that the Department hoped that all current cases would have been resolved by the end of December 2003 and that this deadline might be subject to revision depending on the volume of work revealed. — Following further correspondence Sir Nigel wrote to me again in July 2003, saying that the timetable was being kept under review and that, if there were any changes to the timetable, he would let me know. 3012251009 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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— However, it was not until December 2003 that Sir Nigel wrote to me again, following a meeting of our respective oYcials, to say that the Department acknowledged that in some places it would not be possible to meet the deadline and the Department had therefore agreed to extend it to March 2004. The statement in my follow up report, quoted above, therefore, best expresses our concerns on this issue. April 2005

APPENDIX 1

Memorandum by Mr Paul Overton (CC 01) A national set of criteria and operational guidance is, I believe, essential. I have developed a degree of expertise in this matter, having helped establish and been a member of joint PCT/SSD CHC funding panels in this authority and previously (Croydon). What we currently have is, in eVect a post-code lottery which, should you read just two diVerent SHA policies and guidance, would be instantly clear. For example, the provision of CHC funding and care management to those with a terminal diagnosis is restricted to the last six weeks of life in the Avon, Gloucester and Wiltshire SHA; South West London’s criteria oVers the same funding from 12 weeks before the estimated date of death. Why the diVerence? How does one explain the lack of consistency to users, relatives and carers? There is no standard approach to assessment or decision-making, each SHA/PCT in eVect creating their own assessment tools and interpretation of the criteria. I know that this causes practical diYculties for those caring out assessments and decision-making in relation to those with complex health and social care needs. I will leave you to imagine how in diYcult it is in many instances to explain the outcome of the CHC determination users, their carers and their relatives. What is needed in my view is a national set of guidance which is robust and as unequivocal as possible; that clarity is given on the “middle way” of joint funded packages of care. February 2005

APPENDIX 2

Memorandum by Southampton City Council (CC 03) We welcome the opportunity to submit a brief memorandum to the Committee, based on experience across client groups within Southampton.

1. The Ministerial Statement on 9December 2004 1.1 We warmly welcome the commitment to the “development of a national consistent approach” 1.2 Organisational Growth and Complexity. Whilst the reduction in the number of SHAs has reduced the sets of eligibility criteria, there has been a significant move in the reverse direction with the increase in Local Authority Social Service Departments (following LGR) and the enormous increase in PCTs. Therefore, the number of health and social services organisations involved in interpreting, negotiating and implementing continuing care has increased and with it potential and actual inconsistencies: whilst there will be only one set of criteria in any one SHA, the interpretation and implementation of those criteria will vary between the diVerent PCTs and local authorities within that SHA. 1.3 Requirement for National Leadership. There is a need for stronger national leadership and guidance than heretofore, not only to reduce the “post code lottery” for the patient, but also to reduce the significant waste of resources in every local health and social services organisation trying to interpret and implement the diYcult and complex process of this national policy. 1.4 Omission of Eligibility Criteria. We are concerned that the statement specifically refers only to “assessment for fully funded NHS continuing care”. Whilst national guidance on assessment and process is important, and welcome, practitioners and patients need much greater clarity on what criteria are used in the assessments, ie there needs to be greater national direction and guidance on the criteria themselves (see later). 1.5 Omission of Shared Care. The statement refers only to “fully funded NHS continuing care” (commonly known as Category 1 care); however, criteria also exist for Category 2, “continuing health and social care” and this Category plays a significant part in the implementation of continuing care. It is vital 3012251011 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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that any work nationally also incorporates Category 2, shared care, especially as agencies are encouraged to adopt a holistic approach to patients and their needs, and a partnership/whole systems approach between agencies.

2. What Further Developments are Required to Support the Implementation of a National Framework 2.1 National Criteria. We strongly support the production of one national, standard set of criteria applicable to all SHAs to replace the 28 currently in existence There should be enough commonality in the existing SHA criteria to enable this to happen, accompanied by clear guidance and definition of terms used etc. 2.2 National Guidance. As a minimum there must be a national lead to give greater clarity, guidance and interpretation on the common terms and concepts used in the Department of Health and SHA criteria. This needs to incorporate case law, ombudsman decisions etc. 2.3 Definitions. For example, there needs to be clear, national and consistent definitions/explanations of the following terms: complexity, intensity, and unpredictability. 2.3 Boundaries between Health and Social Care. Many of the issues raised by continuing care are a result of the shift in boundaries between health and social care and changes in eligibility thresholds; in particular the expansion of general nursing tasks now carried out by carers, paid or unpaid. We need clear definitions/ clarification of the following: personal care; general (non registered) nursing care; registered nursing care. The current Section 49 (Health and Social Care Act) definition of nursing care is insuYcient as practical guidance. We need a clear definition/interpretation of “nursing” that diVerentiates between non-registered nursing tasks and registered nursing role/tasks and the relationship between the two. 2.4 What is Health Need? At its simplest level there is confusion about what is a “health need”: is it a need resulting from a health problem or is it only a need that requires the intervention of a qualified health professional? The implications of interpreting these in the diVerent ways are significant. 2.5 Clarification of Terms. There needs to be national clarification of what is meant by the terms “regular” and “supervision” commonly used in the criteria. 2.6 RNCC. There needs to be greater clarity about the RNCC in relation to continuing care applicability and the role of the Registered Nurse in the Nursing Homes as a health professional in relation to, for example, “supervision” as used in the criteria. 2.7 Shared Care. A significant element of continuing care involves assessment and consideration for Category 2, joint health and social care packages under the continuing care criteria. This encourages a holistic approach for the patient and a partnership/whole systems approach between health and local authorities. The promotion nationally of a framework to encourage this approach, including pooled budgets, would assist in more cost eVective, joint working, and fewer disputes between agencies. 2.8 DiVerent Care Groups. There needs to be more recognition of the diVerent needs of the various care groups: for example, in mental health, learning disability and children’s services. There has been a positive move from a health model of predominantly residential care to a domiciliary social care model; from care provided by health professionals to care provided by staV with a social care background and qualifications. Resources have not suYciently followed the change in responsibilities. Criteria are biased towards physical needs and do not take suYcient account of mental health problems and behavioural diYculties, which are likely to be of more significance in these care groups. 2.9 In addition, there is a significantly increased expectation that tasks which were traditionally undertaken by health staV will be undertaken by family carers, or, in their absence or inability, social care staV. 2.10 Assessment tools and processes. Within the local SHA we have worked together on joint assessment toolkits to aid decision-making. Overall the experience of these is positive and they are seen as essential in order to ensure some consistency, objectivity and equity for patients and practitioners alike. However, even across our one SHA, there is a significant variation on how, even whether, they are used. It would be very helpful to have a national assessment tool and guidance on process. Throughout the country there is probably enough material on assessment already which could be brought together into national assessment templates for each care group. If single assessment tools are not seen to be desirable, or possible, national guidance is needed on minimum standards/content of the assessment tools. These developments are necessary to aid transparency, consistency, and help avoid legal challenge 2.11 Key issues locally for the use of toolkits seem to be whether tasks that derive from health needs, are the responsibility of the NHS. If a toolkit assesses a client’s needs holistically and, as a result, proportions health, social care, and educational need, it is unclear whether agencies can contribute to tasks undertaken by another agency’s professionals. 2.12 Training. There is an overwhelming case for more training of staV. This is a priority even under the present regime of continuing care; it will be of even greater importance if the hoped for developments take place. Such training should be carried out jointly with health and social care staV and would benefit from national guidance and funding to support it. 3012251011 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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3. Children with Complex Needs 3.1 Much of the agenda for continuing care has been driven by, and focussed on funding issues for patients, in particular means testing and charging for social care services, versus free health care. By and large these drivers have not applied to children’s needs and services although children are encompassed within the continuing care criteria. Given this, we would specifically like to comment on children with complex needs (although some of these comments below are equally applicable to other care groups, particularly learning disability). 3.2 Children’s needs and services have been neglected in the debate about continuing care. 3.3 Although patient/client means testing is largely irrelevant in children’s services, the issues of inter- agency dispute, interpretation of terms etc are just as crucial. Therefore, the framework must encourage and support joint agency working. 3.4 Specifically, the place of Category 2 joint health and social care, with the addition of education, is even more important, resting as it does on the objective of a “whole child” approach, and the need and desire of most families to care for their children, however complex their needs, within the family setting. 3.5 The shift of boundaries from health to social care has been just as significant particularly given the move from a health to social care model; from health qualified staV to carers, paid or otherwise, qualified or not, family members or foster carers. These changes have not been accompanied by appropriate funding changes. 3.6 The desirable objective (and achievement) of supporting children with complex needs at home (avoiding residential care) is often dependent on parental capacity and willingness to undertake non- registered and intrusive nursing ie health tasks. 3.7 There is a just as great a need to clarify what is a “health need”; what is “nursing”; what is “regular” and what does “supervision” mean in practice. 3.8 There is a need for joint training as well as some means of validating the training undertaken. 3.9 The need for information sharing between agencies is paramount and requires the framework to support this: the children’s common assessment framework must underpin and link to any continuing care assessment tool. 3.10 A major issue relates to the transition of young people from children’s to adult continuing care resources and processes, where diVerent considerations and eligibility criteria may apply: this is particularly notable in the area of “vulnerable adults” where very limited service provision may be available. Developments should recognise how these issues impact on the expectations of both young people and their parents.

4. Summary and Conclusions — Whilst resources and infrastructures may vary across the country, a national health service ensures expectations of national standards of social care and continuing care. A far clearer national lead is paramount. — The developments outlined above would aid transparency, fairness and equity for patients. — All developments and proposals must conduce to the promotion of co-operation and joint working between health and social care agencies, and reduce diYculties between the agencies, which are aggravated by funding pressures. — Whilst the total available resources may not increase if the above developments take place, improved co-operation will lead to more eYcient use of the current resources of the agencies. February 2005

APPENDIX 3

Memorandum by the Progressive Supranuclear Palsy [PSP-Europe] Association (CC 06) 1. The Progressive Supranuclear Palsy [PSP-Europe] Association was established in April 1994. The three main objectives of the PSP Association are to: — promote and sponsor research worldwide into the cause, eVective treatment and eventual cure of PSP; — provide information and support for PSP aZicted families across Europe; and — engender awareness, particularly amongst relevant medical professionals, of PSP and of the Association, mainly within the UK. 3012251012 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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2. PSP is a little known neurodegenerative disease, involving the progressive death of neurons (nerve endings) in the basal ganglia and brain stem, just above the nuclei—hence supranuclear. The cause is not known and there is, as yet, no eVective treatment and no known cure. PSP aVects progressively a person’s vision, balance, mobility, speech and ability to swallow. It can also cause personality changes, incontinence and behavioural problems. Average life expectancy from onset is some seven years, the last two of which are often spent wheelchair or bed-bound, tube fed, on 24 hour care, unable to communicate with the world around, although with intellect largely intact. It mainly aVects those aged over 50, but PSP patients still in their 30s have joined the PSP Association. 3. Leading neurologists estimate that there could be up to 10,000 cases of PSP in the UK today. However, correct diagnosis, especially in the early stages of the condition, is diYcult and until recently many health professionals were unaware of the disease. Misdiagnosis and non-diagnosis is still common. PSP is at least as nasty as and recent research confirms at least as common, in the UK, as its far better known “cousin” Motor Neurone Disease. It is the disease from which the British born actor and comedian Dudley Moore suVered. 4. At some stage during the progression of the disease, and usually by the time a person is admitted to a care home, he or she will have become helpless. They will have to be put to bed and lifted from the bed, perhaps into a wheelchair, dressed, fed, toileted, bathed, turned regularly in bed and wheelchair to avoid sores and discomfort. As various bodily functions close down, complex and seemingly random symptoms will appear unpredictably. These often need to be dealt with by a NHS multi-disciplinary team informed by, and often under the guidance of, neurological expertise. Since there is no treatment and no cure for this disease, the requirement is for informed palliative care in its later stages. 5. The PSP Association has been increasingly concerned about Continuing Care criteria and their operation over recent years. We have received a large number of requests for help with understanding the situation with regard to NHS Continuing Care. In addition our members have reported, on a number of occasions, funding decisions that appeared unfair and inexplicable given the nature of PSP and the needs of people with the condition (see annex for two anonymised case studies). It is quite a common experience that funding is eventually agreed after relatives have sought an appeal and argued their case. 6. A particular problem for people with PSP and their families is the rapid deterioration in physical health that the condition usually causes. Decisions on funding for continuing care need to be made speedily and without the bureaucracy of appeals systems and reviews. Relatives are often left trying to sort out the case even after he person with PSP has died. 7. The PSP Association would like to see the following questions addressed by the Committee’s Inquiry in relation to the Minister’s statement on 9 December 2004: (a) How will the new proposed continuing care framework ensure that decisions can be made speedily? (b) How can the Minister ensure that consistent criteria can be APPLIED consistently across the country? (c) What plans are there to communicate clearly to people involved in seeking continuing care funding what the criteria are and how they are applied? (d) What is the timescale for establishing the new framework? February 2005

Annex

ILLUSTRATIVE CASE STUDY OF WOMAN WITH PSP WHO HAS NOT YET BEEN ACCEPTED FOR CONTINUING CARE FUNDING 1. About six years ago, my wife began to experience a loss of balance and had several serious falls, two of which led her into hospital. She was otherwise healthy and young for her age, with no significant age- related problems. It took about two years to get a diagnosis of PSP. By then, she used a wheelchair but could walk short distances with my support. Generally, I carried her from room to room. I had to turn her regularly at night and she developed a disease-associated bladder problem, so we rarely had more than three hours continuous sleep in over two years. The muscles controlling her eye movement failed; she was unable to scan and thus unable to read. She sometimes became confused, forgetful, irritable, depressed or agitated—all typical symptoms of the disease. 2. Towards the end of 2002 she suVered a disease-related event which led her into our local General Hospital and then two more hospitals. After three months she came home, but the NHS insisted that she was their responsibility and would release her into my care only when they were satisfied that an adequate care package was in place. By then, I had developed a spinal problem as a result of carrying her and, because I could no longer lift her, after a few weeks she had to go into a nursing home. 3. Her NHS neurological consultant said, about 14 months ago, that he doubted she would be alive in two years and not at all surprised if she were gone within one year. Her condition has deteriorated dramatically recently. She is skeletal thin and has gone from a ladies’ dress size 16 to a Size 8–10, decreasing. She is totally helpless and unable to do anything for herself. She has to be put to bed and lifted from bed into a wheelchair, dressed, fed, toileted, bed-bathed and have her nose blown when necessary. Because she 3012251013 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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cannot move from one buttock to the other unaided, she has to be turned regularly in bed and wheelchair. Although her intellect remains active and intelligent, she can neither read nor operate a radio or television set. She cannot see or speak very well and finds it diYcult to complete a sentence. 4. When she was first diagnosed, her NHS neurological consultant told me that there were no drugs that would save her or ameliorate her condition. He said that her treatment would be palliative and reactive. That is to say, the treatment would be managed to ease her discomfort and shield her from unavoidable harm. Since the progress of the disease is unpredictable and complex, symptoms of further functional failure would be treated as they arose by NHS multi-disciplinary specialists. That is what has since happened. 5. When not in bed, she is always in a wheelchair. She must be correctly positioned in the chair and repositioned frequently to avoid sores and discomfort. The chairs are produced by the local NHS Wheelchair Service; their specialists brief the care staV at the Home on the precise and essential procedures for positioning and restraining her. 6. The muscles in her throat are failing so she has progressive diYculty in swallowing and there is a danger of choking. This will probably soon lead to peg-feeding. She is hand fed at present; solids are cut up, liquids are thickened and fed through a straw. This deterioration in swallowing is monitored regularly by the NHS Speech Therapist from a local clinic, who advises staV at the Home on the correct food and drink and how it is to be given. 7. She developed a severe dermatological problem and was referred by her NHS neurological consultant to an NHS dermatology consultant at a local hospital. That lady prescribed certain medical and moisturising creams and unguents which are administered by the care staV. 8. To deal with her agitation, depression, mood swings, and the tremors caused by the palsy, her NHS neurological consultant recommended certain sedative drugs which were then prescribed by her NHS GP. 9. The local NHS Incontinence Unit treated her bladder problem. 10. She developed Type 2 Diabetes, which was treated initially by the local Diabetic Clinic and is now controlled by diet on the advice of her NHS GP. 11. She suVers progressive numbness and loss of use in her left arm, an eVect which is moving into her left leg and will eventually involve both arms and legs. It is a typical symptom of the Cortico Basal Degeneration (CBD) variety of the PSP from which she suVers. She has, from the beginning, been treated by NHS physiotherapists, both hospital and practice, and is now visited regularly by the NHS Community Physiotherapist from a local health centre. 12. As her eye problems developed, she was referred to an NHS consultant ophthalmologist. 13. My wife’s primary need is a health need. She is in a nursing home because she has a disease. Her treatment needs are medical and palliative. She has virtually no social or cosmetic needs. Her accommodation needs are trivial: a small room and a bed and a little food, the cost of which could probably be covered by her State Pension.

NOTES ON A WOMAN’S ACCOUNT OF HER HUSBAND’S CASE (AS REPORTED) TO PSP ASSOCIATION) 14. In 2000 her husband, then aged 72, was diagnosed with Parkinson’s disease (PD). In 2003, after many often horrific falls, usually backwards and with other PSP type symptoms, her husband took an overdose to commit suicide as he had had enough. He was admitted as a PD patient to a local hospital and remained there for nine months. His wife wanted to nurse him at home, but Social Services, she said, were unhelpful and pressured her into accepting that he should be transferred into a Care Home. 15. He suVered there, because his symptoms (typical of PSP); rigidity, staring eyes, falls, diYculty in swallowing etc were not symptoms with which they were familiar. His condition worsened. He did not want to be tube fed. His wife took him home. 16. A short while later, when he had recovered a bit, he cut his wrists in another attempt to “end it” and was then readmitted to the hospital. He was seen by the Registrar there who suspected he had PSP and not PD. He was then taken to a hospital with more neurological expertise and examined by a neurologist, who put on his notes that he also felt the man had PSP; but referred him to an eminent neurologist (who is about to retire) to make a deciding diagnosis (not yet made). 17. Meanwhile, the original hospital assessed him and turned him down for Continuing Care and wishes to discharge him back home or into care. The wife is appealing against this decision, because she felt the criteria were not interpreted fairly (they still have not confirmed that he has PSP, although all the evidence points to this). The fact that the hospital is some one million pounds overspent, makes her feel that he will be rejected on appeal, although there are the strongest grounds of complex neurological need. 3012251014 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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APPENDIX 4

Memorandum by the NHFA (CC 08)

The Written Ministerial Statement on NHS Continuing Care Issued by Dr Stephen Ladyman on 9December 2004 “The Parliamentary Under-Secretary of State for Health (Dr Stephen Ladyman): Today I am commissioning the development of a national consistent approach to assessment for fully funded national health service continuing care and announce the publication of the independent report on continuing care entitled “Continuing Health Care: Review, Revision and Restitution”. I would like to acknowledge the work during 2003–04 carried out in bringing together more than 95 health authority criteria into the legally compliant 28 strategic health authority (SHA) criteria which exist today. Having achieved this objective and significantly improved arrangements for assessing new cases, and having made good progress with the retrospective review of cases where people have been wrongly denied funding in the past, it is now practical to move forward and improve the system further. The Department will work with the SHAs to build on all the good work done so far. Learning from good practice, we will produce a national approach to continuing care to improve consistency and ease of understanding. We want to help to achieve these aims. This does not constitute a break from past practice. As I have said before all the current criteria are fair and legal. It will however make the process easier to understand for practitioners and patients alike.”

How the Changes will Build on the Work Already Undertaken by Strategic Health Authorities in Reviewing Criteria for NHS Continuing Care and Developing Policies — The assessment process for determination of eligibility to NHS continuing care needs to be clearly defined to identify responsibility for what is considered to be the “grey” areas between health and social care—see table below.

(iv) Where daily living tasks e.g. one carer with simple Complex require more than the training - one carer plus Health & assistance of one carer. equipment and training in Social its use - more than one Local Care carer. Authority

need for level of care Care supervision and supervision and monitoring monitoring which can be to prevent deterioration in delivered by lay person current condition (either who has acquired physical or emotional) expertise.

need for level of care supervision and monitoring Care, supervision and Own home, to prevent risk to self and monitoring by or under the Sheltered or Grey others or to prevent guidance of trained staff, Extra care Area deterioration in including qualified nursing current condition. staff. Residential care or nursing people who need specialist home. health care that could be Carers with a body of provided outside a hospital knowledge in a relevant setting, to maintain specialised area or optimum level of specialised equipment or Health functioning and quality of therapy or a specialised Authority life. environment. (v) Needs require more As in Group (iv) above plus Own home, Continuing specialised therapeutic or active [on call] clinical Sheltered or Health Complex medical care than those supervision and review Extra care, Authority Health Care covered in Groups (iv) or from a consultant or GP. nursing home, (v) hospital. (100%NHS)

— For those resident in nursing homes the point at which they are assessed for their level of Registered Nursing Care Contribution (RNCC) would also be an eVective time to identify eligibility to continuing care funding. Lead nurses conducting these assessments should be trained to identify such cases based on a uniform nationally adopted assessment process/tool. — As health changes so do needs therefore regular reviews of assessments in a timely manner need to be carried out as mandatory. — Some cases retrospectively considered to be eligible to fully funded NHS care were previously either banded as middle or high dependency in determining their RNCC. The definition of these bands needs to be examined and redefined to separate them from each other and eligibility to continuing care. 3012251014 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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— Self-funding care home residents must not be overlooked. NHFA care advice line is aware of cases that once identified as self-funding are often left to their own devices in seeking care, particularly on discharge from hospital. This can lead to inappropriate care being chosen either a nursing home where if assessed residential care funding would only be oVered or into care homes that are more expensive than local or health authorities would be prepared to pay for if the individuals resources fell below the LA means test limit or they became eligible for continuing care funding. — Multi-disciplinary assessments to include qualified medical staV are essential to determine all the patients care needs. Such initial assessments and regular reviews need to be mandatory. — Patients and their families need to be made aware of the consequences of choosing accommodation that may not be aVordable over the long-term and instructed on how to address this issue at the outset.

Whether the Review of Past Funding Decisions has Succeeded in Addressing the Needs of Patients Wrongly Denied NHS Funding for Their Long-term Care — NHFA experience indicates that many cases reviewed were done so because of requests from their families who were made aware of the possibility of continuing care funding through the media or other sources. To be certain that all possible cases have been reviewed families or representatives of all cases that may have been eligible since 1996 should be written to oVering guidance on how to determine whether care received was primarily health care as opposed to social care and, how to obtain a review if appropriate. — Local authority funded residents should also be included. Although much of their care costs may have been borne by the local authority many would have wrongly contributed their pensions/ welfare benefits which accruing over time would not be an insignificant financial loss. — Once assessed as being entitled to NHS continuing care consideration needs to be given as to where that care is delivered. Patients should be given the opportunity to top-up NHS funding to facilitate a move to preferred accommodation. — Many self-funding care home residents may already reside in accommodation which is more costly than the NHS would normally pay for and a subsequent entitlement to NHS funding may require a move to less expensive accommodation. Moving older people as this vulnerable stage of their lives can be extremely detrimental to their health and well-being and, in some cases could cause premature death.

What Further Developments are Required to Support the Implementation of a National Framework The introduction of a single assessment process/tool based on national criteria would assist in removing the existing postcode lottery to continuing care funding. Training programmes of assessors should be determined nationally and adopted by all SHAs. NHFA provides advice and information on obtaining and paying for care. Combining advice to illustrate the aVordability of chosen care together with the many other complex issues older people and their families should consider including local authority charging procedures, health authority responsibilities, DWP benefits and legal matters. The NHFA aims to enable older people receive and choose appropriate care according to their personal circumstances whilst also preserving their independence, dignity and right of choice. February 2005

APPENDIX 5

Memorandum by Enfield Disability Action (CC 10) EDA is a charitable company limited by guarantee. It is run by and for people with physical disabilities, sensory impairments, mental ill health, learning diYculties and life-threatening illnesses.

Synopsis of the Local Background to Continuing Care Criteria New criteria were put to the local Health and Social Care Board in May 2003. The Voluntary Sector could not agree them. It was unclear if Ms Coughlan would qualify for NHS care under the criteria. Requests for public consultation were rejected on the basis there was no significant change in the criteria from previous criteria (the original criteria.) The Board met in August 2003 and the issue was referred back to the SHA. In summer 2004 criteria were issued for public consultation. These contained explicit references to the scale of needs/disabilities test (the test). However, the consultation presentations showed public authorities were 3012251015 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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unaware of the significance of the test. The focus was on clinical input. The criteria (the final criteria) were agreed by SHA Board in December 2004. The explicit references to the test were removed relying instead on wording from the 2001 DoH guidance. The Ombudsman had already described that guidance as “opaque”.

The Written Ministerial Statement 9December 2004 The statement suggests a smooth operational outcome culminating in increasing awareness and correct application of criteria. This is diYcult to reconcile with the synopsis. The relevant public bodies were pressed to move toward the post-Coughlan era. The approach to the original criteria is illustrative.The original criteria apparently contained a serious error. They permitted funding on a percentage split basis eg a package could be split 80%/20% health and social care respectively. In such a case the individual would not qualify for continuing care and was charged for the social care element whereas the prime need was obviously for health care. Requests for copies of the criteria (and the dates they were used) have been made but no copies sent despite the fact the criteria are public documents.

“How the Changes Will Build on the Work Already Carried Out by SHAs....” The changes indicated are learning from good practice and the independent review to produce a national approach that is consistent and easy to understand. Locally a quantum leap has to be made. The final criteria borrow the language of the judgement but the mindset is pre-Coughlan, focusing on clinical input not the continuity or intensity (the amount) of care needed. Individuals are still being assessed as ineligible for continuing care who have a scale of needs at least equivalent to those of Ms Coughlan.

“Whether the Review of Past Funding Decisions has Succeeded....” It is doubtful if the review succeeded. If the mindset focuses on clinical input how could the implications of Couglan inform the review? The result is the particularly low number of cases identified for reimbursement, 14 out of 125 at July 2004.

“What Further Developments Are Required....” National criteria which are explicit regarding Couglan compliance must be established and comprehensive training provided in making continuing care assessments. If local defective criteria persist any training will be utterly useless and injustices endured by vulnerable people will continue and resources wasted in resolving unnecessary conflicts. To complement the national framework the viability of direct payments for individuals entitled to continuing care should be closely examined. February 2005

APPENDIX 6

Memorandum by the Royal College of Physicians of Edinburgh (CC 11) The Royal College of Physicians of Edinburgh is pleased to respond to the House of Commons Health Committee’s “New Inquiry—NHS Continuing Care”. Comments have been received from Fellows in active geriatric practice in England and so it should be noted that these comments relate only to continuing care services for medically ill elderly patients.

The Written Ministerial Statement on NHS Continuing Care The Ministerial Statement was brief and gave little indication of what further changes are intended in continuing health care provision and funding. We agree that disparities in the funding and provision of NHS continuing care remain throughout the country with diVerences between and within health authorities in their application of criteria for NHS care. These criteria are often diYcult for professionals to understand and apply, far less the general public. A national framework to improve consistency should be welcomed but we note the diYculties described in the accompanying report “Continuing health care—review, revision and restitution”. Particular attention should be paid to the findings that: — Disparities in historical provision of “in-house” NHS care in diVerent authorities and the eVect this has on the application of criteria for NHS or privately funded care. —DiYculties in gaining agreement between health and social care partners. — That central guidance was issued on the criteria for NHS care originally, but this led to the development of many similar but diVerent criteria around the country. 3012251016 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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How the Changes Will Build on Work Already Undertaken As noted above, no information has been given on what further changes are planned. The accompanying report concludes that rationalisation of criteria for NHS continuing care has been achieved following on from reorganisation of health authorities. It has, however, highlighted the diYculties inherent in this process. We have to question, therefore, whether fresh guidance will be suYcient to ensure a suYcient and equitable approach across the country. In addition to the consolidation of criteria, we would advise that: — Further work be undertaken to avoid duplication of assessments by health and social work departments. — There should be further examination of the rather arbitrary boundaries between residential, nursing and continuing health care to streamline the process of assessment and in particular reassessment. The idea that funding of all care needs should be by a single social care/health body should be reconsidered eg there are concerns that if current “health” spend is too low in a particular area that significant funds will have to be found and there seems to be no mechanism for funding to be diverted from local authority social work department budgets to health in this context. A single budget would relieve these worries and provide a degree of ring fencing in both sectors’ budgets. — We would also highlight that the present rate of health authorities’ support for nursing homes is inadequate and that requirements for “top up” fees which disadvantage the weakest and poorest are commonplace. — Where NHS care is provided in the private sector rather than by NHS units, common standards of care should apply. — Assessments should be led by a specialist multidisciplinary team led by geriatricians. There are still too many examples of patients being admitted to care without full assessment and identification of remediable illness and other issues. — Assessment periods are often relatively short, whereas recovery from illness in elderly patients is frequently prolonged and characterised by relapse. There is a clear need to reassess patients and have mechanisms for changing placements should patients’ conditions improve and no longer require NHS funded care. — The break up of historical NHS long stay services has fragmented and dispersed the service amongst a number of providers in diVerent health care situations. Some patients are now placed in relatively unsupervised areas of care and specialist services are thinly stretched. This results in an increased burden on primary care and an increased risk of usage of acute services for intercurrent illness previously managed in traditional long-term care settings.

Review of Past Funding Decisions The report “Continuing health care, review, revision and restitution” has documented thoroughly many of the pressures and diYculties of reviewing past funding decisions. We would echo the experience that the articulate and the intelligent are more likely to obtain “free” care through their advocacy and those who are most disadvantaged are least likely to benefit from the review system. There may well remain unidentified cases as a result. Consideration should be given to improving advocacy for such patients. The priority should, however, be to ensure that criteria are applied fairly in the future. The provision of free board and lodging in the NHS care institutions remains an anomaly and we note that in Scotland where there has been a more generous interpretation of free personal care the number of appeals has been much lower. The appeal system is vastly complex and the plethora of NHS and social services authorities who are involved in commissioning, providing and assessing patients going through the system seem to be designed simply to complicate the process. Although the review document highlights the local issues involved in the appeals process there is still no national information on the proportional spend on health or social care in diVerent health authority areas. Such information taken over large enough populations should help to identify rogue health authorities or social work departments who have applied criteria either too strictly or in too lax a fashion.

What Further Developments Are Required? We fully support the development of a national frame work which identifies best practice, raises standards and reduces inconsistency and inequity, and which results in a fairer, simpler and more intelligible system. We have alluded throughout our response to areas which we believe are key to this process: — Historical and geographical variations in care provision inevitably exist and diversity should not of itself be discouraged. — Individual patient assessments are key and should be comprehensive and specialist led. — Reassessments will be needed and must be sensitive to the care needs of the most vulnerable. 3012251016 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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— At a population level it should be possible to determine levels of spend on diVerent care groups and target improvements appropriately. — The “free” board and lodging in NHS provided care remains an anomaly. In Scotland a wider definition of free personal care seems to have satisfied those who have resources and the level of appeals against placements has been much lower. — Unification of health and social budgets and ring fencing could also simplify the funding process although there are clear institutional barriers to this. — The debate about what constitutes health and social care should continue. It is ironic that the diYculties which have arisen in recent years have been because of a move away from the philosophy of “cradle to grave” NHS care. If for example patients are unable to feed themselves because of chronic illness and require assistance (a social care need), and this assistance is not given, the lack of nutrition quickly becomes a “symptom” and results in further medical illness. Such symptoms may be just as relevant to the health of the individual as chest pain in ischaemic heart disease and bony pain in advanced cancer. The provision of properly resourced expert free care at the point of need should remain the ultimate goal of any civilised health care system. February 2005

APPENDIX 7

Memorandum by Hampshire County Council (CC 12)

1. Hampshire County Council We are the largest of the four local authorities within the geographical boundaries of the Hampshire and Isle Of Wight Strategic Health Authority (SHA). Hampshire County Council has co-terminus geographical areas with seven of the 10 Primary Care Trusts (PCTs) within the SHA.

2. Brief Local Historical Context The SHA produced its latest NHS Continuing Care Eligibility Criteria in October 2002. Over the following year, many practitioners reported (through operational management and the Council’s solicitors) that they were not being successful in getting PCTs to accept responsibility for patients who, in the practitioners view, clearly met the criteria for NHS Continuing Care. Additionally, our own solicitor’s legal view was that by funding the care of such patients, the Local Authority was acting ultra vires in that it did not have the statutory power to do fund people who had primarily health needs 2.1 For the past year, we have dedicated specific resources to the issue of NHS Continuing Care. This has included the commissioning of legal advice from a barrister regarding the extent and nature local authority responsibilities, the appointment of a Continuing Care Strategic Manager and the implementation of Continuing Care training programme for staV. 2.2 Based upon this legal advice, we issued a Continuing Care Resource Pack for our staV. This pack is attached as Annex A to this submission.1 The contents include; guidance for staV, legal advice with Q&A section, process flowcharts, standard letters for making applications and appeals and details of Health Ombudsman decisions. 2.3 Consistent themes have emerged in our experience of working with PCTs and these themes are also borne out in the DoH “Continuing Health Care; Review, Revision and Restitution” paper and the latest Health Ombudsman Report—both of which were issued in December 2004. These themes are: — The lack of information for patients (none of the seven PCTs with which we work have yet published a information leaflet on continuing care for patients or their families); — delays in decision making; — decision making not being transparent and fair; — decision making processes that are not being made in accordance with the law and Health Ombudsman decisions; — a poor record of communication with patients and their families regarding continuing care; — an inability to eVectively commission and contract services to meet needs of patients who meet NHS Continuing Care criteria; — variable arrangements for the monitoring and reviewing of NHS continuing care patients.

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2.4 The importance of budget deficits in the whole of the local health economy cannot be emphasised enough. All seven of the PCTs with which we work have projected overspends and are under severe pressure to balance their budgets. This means that each of the PCTs are implementing savings plans. The PCT community have identified Continuing Care as an area where savings can potentially be made. However, these recovery targets are not based upon evidence of the needs of the population.

3. Specific Joint Work to Resolve Local Issues We have initiated a series of meetings with the SHA, the seven PCTs, Hampshire County Council solicitors and the PCT’s legal advisors (Bevan Brittan). These meetings have considered a range of issues relating to local continuing care policy and practice. Good progress has been made and two joint legal agreements have now been adopted. The first legal agreement is attached as Annex B.2 This agreement covered the issues of assessments, discharge, placement, change of setting, terminal care, responsibility, RNCC and assessment tools. It is not yet possible to provide the Committee with Legal Agreement no 2 as it is in the final stage of consultation.

4. Ministerial Statement of 9December 2004 We acknowledge that “the development of a national consistent approach to assessment for fully funded NHS Continuing Care” is long overdue and we concur with this as a priority area of work for the DoH to undertake. We have already oVered to assist the DoH in any way that we can to progress this work. 4.1 We are concerned that that the statement only identifies a clear approach to “assessment”. The current operational issues regarding Continuing Care go way beyond the single issue of assessment. We ask that any new National Framework deals with all of the issues that we detail in this submission, especially those that are listed in sections 5, 6 and 7 of this submission.

5. What Further Developments Are Required to Support The Implementation of a National Framework?

5.1 A National Criteria It is clear that diVerent processes and arrangements exist in diVerent SHAs. Such inconsistencies also occur between PCTs within the same SHA. This has resulted in entitlement to and availability of Continuing Care being dependent upon where you live. The adoption of national criteria will improve this unsatisfactory situation.

5.2 Further clarity concerning “Responsible Commissioner” Existing guidance (issued by the DoH in November 2003) is clearly not robust enough. We are spending considerable time in trying to resolve Responsible Commissioner disputes between PCTs. This is particularly problematic when the two PCTs involved are not within the same SHA. We have experienced very long delays—in one case, in excess of two years—which can only result in distress to patients and their families. Responsible Commissioner guidance needs to be clearer with a greater emphasis on the speedy resolving of disputes between PCTs, in pursuit of the best interests of the patient.

5.3 Clarity of the significance of Health Ombudsman Decisions and Recommendations The PCTs with which we work (and their legal representatives) do not accept that Health Ombudsman decisions as precedent. Therefore, they do not agree with our view that where a patient has broadly similar needs to those Ombudsman cases which have been identified as meeting the continuing care criteria, we would expect similar outcomes. It would be very helpful if the New Framework made reference to past and future Health Ombudsman decisions and the relevant weight of such decisions should have as a guide to practice for both PCTs and Social Services Departments.

5.4 Clear distinction needs to be made between RNCC and Continuing Care The introduction of RNCC bandings for NHS contributions to nursing home placements has merely added to the confusion surrounding entitlement to NHS Continuing Care. Particularly where the description of high band RNCC is very similar to the description of Continuing Care. The Ombudsman has clearly stated in her December 2004 report that “some NHS bodies appear to regard entitlement for NHS continuing care funding as simply a “top band” above the higher band of RNCC funding. This may mean that they are not considering the totality of a patient’s healthcare needs before assessing eligibility for RNCC

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funding”. The national framework needs to ensure that Continuing Care is a distinctly separate issue to RNCC and that each is a separate assessment. Furthermore, PCTs need to reflect this in their decision making processes. Our agreement with the PCTs makes this clear and emphasises that Continuing Care entitlement must be looked at before an RNCC determination.

5.5 Definitions of Terms We would welcome national guidance on the following terms so that joint understanding can be reached between social care and health professionals involved in Continuing Care assessments; Complexity, intensity, unpredictability, regular supervision, what constitutes a “member of the NHS multi-disciplinary team”—does this include a social worker (as some MDTs do contain social workers) exists—does this include a registered nurse in a care home?

5.6 Clarity about “nursing care” Section 49 of the Health and Social care Act defines registered nursing. This is not helpful in practice, as many nursing tasks are carried out by staV or family members who are not registered nurses. The Health Ombudsman, in the Pointon case, stated that Mrs Pointon was providing her husband with a highly skilled level of care which was equal to, if not superior than, that he would have received in an in patient ward. Therefore, the Ombudsman found that the qualification of the person giving the care was not relevant but it was the nature of the task which was important. Hence, there is a need for further clarification and explanation of “nursing care” that goes beyond that detailed in section 49.

5.7 Clear definition of “Incidental and Ancillary” If the above issue concerning the definition of nursing can be satisfactorily resolved and explained, we then come to the need for identification of what might be an amount of such nursing care that is incidental and ancillary to the accommodation provided (and therefore the responsibility of the Local Authority and/ or patient to fund). Such guidance would help to define the converse—the amount of nursing care that exceeds being merely incidental and ancillary (and is therefore the responsibility of the NHS to fund). Our experience in Hampshire is that there is very little recognition or understanding of this qualifying category in Continuing Care decision making.

5.8 Dispute Resolution We hope that any new framework will result in better joint understandings and joint working arrangements between Health and Social care agencies. At present, dispute resolution procedures are very unsatisfactory and unclear which means that a great deal of time and resources are used in dispute resolution. This is not only not conducive to good joint working arrangements but will also can have very distressing impact upon patients and their families. Disputes need to be resolved quickly, in the best interests of the patient and in accordance with the law. We are discussing with our PCTS and the SHA how we can improve our process, including the use of the SHA Independent Review Panel as an adjudicator.

5.9 The need for recognition of the right of Patients with Learning Disabilities or Mental Health Problems to have fully funded NHS Continuing Care These patient groups are doubly disadvantaged in relation to patients that are either physically disabled or are over 65. This is because of the recent history of these care groups, where we saw NHS in patient units closed as patients were resettled into community accommodation. What we have witnessed over time, is that tasks that were previously undertaken by Registered Nurses have been increasingly taken on by highly skilled and experienced care staV or support workers. This point is inextricably linked to the above point regarding what is nursing care. The second reason for these client groups being disadvantaged is that none of the case law or Health Ombudsman’s decisions relate to these client groups; therefore, no comparisons can be directly or indirectly made. The eVect of the combination of the two above factors creates real diYculties for patients, families and practitioners in identifying where the threshold for NHS Continuing Care might lie. 3012251017 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

Health Committee: Evidence Ev 111

5.10 Reliable Assessment Tools There is a clear need for national assessment tools to be developed and implemented in order to assist those involved in Continuing Care assessments. Such national tools will minimise any potential for variations between SHAs and will mean consistency for patients countrywide. Furthermore, they will assist in providing evidence to demonstrate how decisions are arrived at (and will therefore be subject to scrutiny and challenge). Such tools should be implemented with scope for review and improvement over time.

5.11 Joint Training The need for joint training of social care staV, PCT staV and staV based in Hospital Trusts is demonstrably clear. It is badly needed presently (and we have reached a local agreement to jointly undertake this from April 2005) and is essential to the successful implementation of a national framework. Shared understanding will lead to better joint working, fewer disputes and timely decisions being made in the best interests of the patient.

6. Summary Our experience over the past two and a half years in attempting to implement the SHA Eligibility Criteria has highlighted a number of shortcomings with the present arrangements. We have welcomed the two reports that were issued in December by the DoH and the Health Ombudsman, as they confirm that many of the issues and problems we are experiencing in Hampshire are indeed widespread and require a national solution.

7. Recommendations We recommend that the Health Select Committee seriously consider the points we have raised in our submission. We ask that the Committee use its influence to finally resolve an area of policy that has been at issue since the inception of the NHS in 1948. We ask that the Committee support the need for a national criteria that is clear, consistent, fair and transparent and is patient centred. This can only happen if clear guidance and leadership emerges to deal with the following issues: — National Criteria That are clear, consistent, fair and are open to challenge. Such guidance will need to include the continuing care thresholds for patients who have a learning disability and for those patients who have a mental health problem. Any terms and phrases used in such national criteria would need to have clear guidance notes regarding the definitions of such terms. Similarly, satisfactory clarity must be given about the nature of “nursing care”. — Joint Training So that Continuing Care assessment are based upon common understanding between Health and Social Care professionals. This will and promote better joint working practices. — Reliable Assessment Tools Such tools are essential to ensure transparency, fairness and clarity regarding decision making. February 2005

APPENDIX 8

Memorandum by BUPA (CC 13)

Summary BUPA welcomes the Committee’s Inquiry into NHS continuing care and broadly advocates a national framework for NHS continuing care. We recommend that rather than develop a new tool for assessing continuing care the NHS adopts the internationally used and well-established Minimum Data Set. We also suggest that the various assessments should be consolidated into a single assessment. In addition, we propose that a single assessment be repeated in a structured manner for those eligible and ineligible at time of entry into care to ensure those with progressive conditions do not get forgotten. 3012251018 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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Introduction BUPA is a global health and care organisation with eight million members and over 40,000 employees in 192 countries. We are a provident association, which means that any profit we make is re-invested in better health and care services. BUPA’s interests include health insurance, hospitals, nursing and care homes, health assessments, occupational health and recruitment services. BUPA Care Services is the UK’s leading care home operator caring for over 16,000 residents in 258 care homes. The NHS or local authorities fund more than 70% of BUPA’s residents. We have around 5,000 dementia care beds in our care homes across the UK. A recent census of our care homes revealed that over 90% of BUPA’s care home residents were admitted as a result of defined medical conditions and associated disabilities and over 70% of admissions were related to dementia, stroke or Parkinson’s disease. BUPA is submitting this evidence on behalf of BUPA Care Services.

1. The Written Ministerial Statement on NHS Continuing Care Issued by Dr Stephen Ladyman on 9December 2004

BUPA broadly welcomes Dr Stephen Ladyman’s announcement of the development of a national approach to continuing care. BUPA has long advocated a national consistent approach to assessment for NHS continuing care. This is due to our concerns about the inconsistent and unsystematic way the current assessment criteria are used, which often mean many older people are unfairly denied their care entitlement.

2. How the Changes will Build on the Work Already Undertaken by Strategic Health Authorities in Reviewing Criteria for NHS Continuing Care and Developing Policies From BUPA’s experience Strategic Health Authorities do not proactively seek eligible cases and do not seem to routinely question whether individuals are eligible for fully funded care. In addition, decisions about eligibility are not currently publicly reported. BUPA advocates a consistent national approach to assessment. Rather than delay implementation further through the development of a new assessment tool, BUPA would support the use of the internationally used and well proven Minimum Data Set (MDS). At the same time as implementing a consistent national approach to assessment BUPA recommends a consolidation of the assessments for eligibility for NHS continuing care and NHS continuing support in the form of the “Registered Nursing Care Contribution to Care” (RNCC). The current system is both complex and confusing and so a single assessment would highlight to individuals their responsibilities for funding personal care. A clearer and consistent assessment process will not only benefit patients but also health care regulators by enabling them to determine the appropriateness of care being commissioned.

3. Whether the Review of Past Funding Decisions has Succeeded in Addressing the Needs of Patients Wrongly Denied NHS Funding for Their Long-term Care

Despite the Ombudsman’s involvement, there are cases where individuals have been denied funding due to their ineligibility at the time of entry into care but due to progressive diseases they may subsequently meet the criteria. Planned reassessment of those who are ineligible for fully funded care at the point of entry is rare. By comparison those who are eligible and are regularly reviewed to ensure they are still eligible. Since chronic diseases like Alzheimer’s are progressive, some patients who do not meet the eligibility criteria initially may do so later. BUPA therefore recommends that the single assessment should be repeated in a structured manner. This would avoid eligible people failing to receive the help to which they are entitled.

4. What Further Developments are Required to Support the Implementation of a National Framework?

BUPA encourages the Committee to support a statutory requirement for a standard single assessment measurement for all types of care. A programme of staV training and support must accompany the implementation of a national framework for continuing care. We also recommend that the process of assessment for eligibility be monitored in a structured manner by a regulator. February 2005 3012251019 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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APPENDIX 9

Memorandum by the NHS Confederation (CC 14)

Introduction 1. The NHS Confederation welcomes the inquiry as to the eVectiveness of the existing arrangements for the review of continuing care decisions following the guidance given by the Department of Health in 2001 and following the report “Continuing Health Care: Review, revision and restitution”. 2. The NHS Confederation is a membership body that represents over 93% of all statutory NHS organisations across the UK, including 90% of Primary Care Trusts (PCTs) and 100% of Strategic Health Authorities (SHAs). Our role is to provide a voice for the management of the NHS and represent the interests of NHS organisations. We are independent of the UK Government although, of course, we work closely with the Department of Health and the devolved administrations. 3. Our evidence sets out our general views, based on feedback from a cross section of members in the last month, on the current situation regarding the consistency of the continuing care review process. Where appropriate, we have also included more specific comments on the questions asked.

Overview 4. The NHS Confederation urges the committee to consider our views in the light of the other policy initiatives, chiefly those which move the emphasis of care from one of entitlement and institutionalisation to one based on the promotion of patient choice, empowerment and independence. 5. The NHS Confederation also stresses that continuing health care requires a continuum of provision and is not undertaken in isolation from social care, particularly where services are part of a “joint” package with social services, independent providers and voluntary sector colleagues. 6. Whilst some packages are delivered at high cost out of the geographical area in which the client has previously lived, there are equally complex cases provided in clients’ own homes by a range of partners. 7. The NHS Confederation believes that any national framework must enable clients along this entire spectrum of continuing care to have a package of care which has been developed with their full participation and for it to be put in place with full regard to their personal choices and preferences for its delivery.

The written ministerial statement on NHS continuing care issued by Dr Stephen Ladyman on 9 December 2004. 8. The Confederation welcomes the development of a national framework within which local assessment and review systems can be co-ordinated to ensure consistency of approach and outcome for patients and their carers. 9. We hope that our responses to questions three and four below will oVer suggested solutions to issues raised in the report “Continuing Health Care: Review, revision and restitution” as areas where further work is required to aid consistency, both of assessment and implementation.

How the changes will build on the work already undertaken by SHAs in reviewing criteria for NHS continuing care and developing policies. 10. The NHS Confederation wishes to emphasise the range and quality of the work already done by SHAs and PCTs in setting local criteria and systems which have enabled large numbers of continuing care decisions to be reviewed within tight timescales. Informal feedback from members shows, however, that this work is ongoing with a steady trickle of new review cases still being identified across England. We would urge that the new framework continues to build on this work and the learning from it.

Whether the review of past funding decisions has succeeded in addressing the needs of patients wrongly denied NHS funding for their long-term care. 11. Members, whom we have consulted in developing this evidence, have reported that the national guidance was helpful in providing a framework.

What further developments are required to support the implementation of a national framework? 12. The NHS Confederation believes that any assessment must be linked to the Single Assessment Process (SAP), developed locally between health and social care partners. Where patients are under 65 years of age, we believe that the multi-disciplinary assessment aVorded by SAP is still the most pragmatic and suitable assessment tool available. New assessment systems should not be necessary where this linkage is in place, particularly where it is supported by eVective cross agency information systems. 3012251019 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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13. The responsibility for clients with continuing health care needs sits with the PCT with which the individual is registered and is most likely to be the PCT in which the care is to be delivered. Social care provision is the responsibility of the placing Local Authority and remains with them even where the client is placed out of the area. There is the possibility, therefore, for confusion for clients and carers in their navigation of the system, dealing potentially with organisations within two diVerent geographical locations and with diVerent eligibility criteria, which the Confederation hopes will be addressed by the national framework. 14. This also has meant that some of the benefits of joint working and wider partnerships between health and social services colleagues have been more diYcult to realise. 15. Indeed for some PCTs there may be a perverse incentive for high cost cases to be placed away from home. We urge that this anomaly is addressed in any further development of the existing framework. 16. Whilst the continuing care eligibility criteria has been primarily used for older people, in some areas, revised criteria have been developed for use with people with mental health problems and a separate document for use with people with learning disabilities. 17. In learning disabilities, where this has been used with young people coming through into adult services, and for people ready for discharge from forensic in-patient services, it has increased dramatically the number qualifying for 100% health funding. This is particularly important as the funding will need to be for a lifetime of care and support. 18. It has already been suggested that diVerent criteria may be needed for patients with learning disabilities. This issue must be addressed by the framework in order to ensure equal access and the development of criteria which enable commissioning of packages which reflect individual client needs. 19. The NHS Confederation believes that any framework must address the present variability in assessment through re-enforcing the need to produce a balance of clinical judgment and criteria-based, multi-disciplinary assessment, in which the patient and main care givers are fully involved and which is of high clinical quality, emphasising the delivery of care in appropriate settings based on clinical need. 20. This system, whilst recognising that flexibility is required to ensure that care is personalised, must also be supported by a monitoring and audit process, potentially co-ordinated through the local Continuing Care Panel and enabling consistency to be monitored locally and on a regular basis. 21. Such systematic audit processes will need to be supported by training of auditors and the continuing professional education of assessing clinicians. The Confederation urges that this support process be resourced as part of the framework development. 22. The NHS Confederation believes that, in this way, a robust assessment and monitoring system can be put in place, based on national guidelines but enabling clinical judgment to be used to ensure that packages of care reflect local circumstances. This should also improve contestability of decisions and add national consistency of application of the framework. February 2005

APPENDIX 10

Memorandum by Association for Children with Life-threatening or Terminal Conditions and their Families (ACT) (CC 16)

1. ACT believes that the announcement of the development of a national framework for NHS continuing care could potentially overcome the inconsistencies in service provision and inequities of services received by children with life threatening/life limiting conditions and their families. 2. The Statement by Dr Stephen Ladyman, Parliamentary Under-Secretary of State for Health does not indicate that children and young people’s needs will be considered within this work and although there is potential for inclusion, this is not specifically stated. This suggests that children and young people will be excluded from the inquiry. 3. ACT asks the Health Select Committee to ensure that the individuals involved in the development of the national framework will include representatives from children’s and young people’s services. 4. ACT welcomes the introduction of the Children’s National Service Framework and is pleased that the work includes a section on palliative care, but for equity of service provision there is a need for children’s services to be considered alongside adult services not only in “stand-alone” documents. There still is no consistent national overview or strategy on children’s palliative care services. The National Service Framework for Children gives some direction to the development of children’s services, but the guidance is very broad and many Primary Care Trusts and Strategic Health Authorities do not fully support the case 3012251020 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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for developing integrated children’s palliative care services. DiVerent agencies are often competing for the small amount of funding that is available, which leads to a fragmentation of services. Children’s palliative care has a relatively small influence within each Strategic Health Authority, partly due to the fact that the numbers of children aVected are small. However the needs of these children and their families are complex and resources allocated are often insuYcient. 5. Palliative care for children and young people with life-limiting conditions is an active and total approach to care, embracing physical, emotional, social and spiritual elements. It focuses on quality of life for the child and support for the family and includes the management of distressing symptoms, provision of respite and care through death and bereavement. It is provided for children for whom curative treatment is no longer the main focus of care and may extend over many years. 6. Short term breaks (respite) within the home and out of the home are essential components of a palliative care package. Some families also need the support of a long-term respite facility. Many parents prefer to care for their child within the family home and to do this they need a range of essential support. There are a number of voluntary sector and NHS and Social Services agencies which provide support in the home, but often the provision is insuYcient to meet needs. One major diYculty with respite provision is that social services are unable to provide appropriate services when a child has complex medical or nursing needs and so the usual avenues for support are often closed to families caring for a child with a life-limiting illness. Many children with complex medical and nursing needs can receive funding from their PCT through Continuing Care, but there is no national criteria for accessing this funding—an issue which needs to be addressed. There needs to be a menu of options for respite, including children’s hospice services, and this menu would be best provided through a partnership between health, social and education services and voluntary agencies. 7. In general services for children with severe complex and life-limiting problems are very patchy. Services for children require flexibility and the children and families should be assessed at regular intervals to ensure that their changing needs are provided for. 8. ACT believes that all patients, irrespective of age, who receive palliative care should meet local criteria for fully funded NHS continuing care. 9. This evidence is submitted on a corporate basis. ACT would be very pleased to give oral evidence if required and would be able to supply a parent representative to give a “first hand” account of what it is like to be in receipt of palliative care services. As the only organisation which can represent children, their families and those working with them, ACT would also be happy to provide contact with a wide range of professionals working in this demanding area if this would be useful to the committee. February 2005

Notes The Association for children with Life-threatening or terminal Conditions and their Families (ACT) is a registered charity and was formed in 1993 as the first national organisation to represent and support all those living or working with children with life-limiting illnesses and to promote the needs of all children1 with a life-threatening or life-limiting condition. ACT has been at the forefront of developing children’s palliative care and continues to champion the needs of children and families and support professionals and will continue to work to fulfil this role for the foreseeable future. Although based in the UK, ACT continues to seek the development of children’s palliative care internationally. ACT’s mission is to influence, co-ordinate and promote the provision of the best possible care and support for children and their families, through: — promoting partnership between professionals and between families and professionals; — expanding membership to enhance its representative voice; — advocating for aVected children and families; — supporting families with information; — supporting professionals through information and education; — promoting knowledge and awareness; — providing a forum for the exchange and development of information between parents and professionals. ACT represents the children and young people aVected with a life threatening or life limiting condition, their parents and families and the professionals involved in the care of the children, young people and their families.

1 We have used the term “child” to mean any child or young person. 3012251021 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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APPENDIX 11

Memorandum by Solicitors for the Elderly (SFE) (CC 17) SFE is a UK association of lawyers who specialise in acting for the older and disabled client, their family and carers. The need for involvement of many lawyers throughout England in the area of NHS Continuing Care and its funding, is itself an indictment of the present system. If the eligibility criteria in place were fair and legal and if the process undertaken to establish eligibility was clear, transparent and, above all, communicated to those who need to understand, there would be little need for lawyers. Sadly we have not found this to be the case.

The Written Ministerial Statement on NHS Continuing Care Issued by Dr Stephen Ladyman on 9December 2004 As an organisation, many of whose members have long sought the logic of a National framework, the minister’s statement is very welcome. It follows years of confusion in this area and frustration and heartache for many patients, their families and representatives. This confusion continues to the present and will only be removed by a determined eVort on the part of the Government. We are very pleased to have an opportunity to address the Health Committee in writing, and in person if required. We take issue with the statement “all current criteria are fair and legal”. If it were correct then patients with primary health needs, which are more than ancillary or incidental to their need for accommodation, such as Pamela Coughlan would be able to obtain funding in any of the 28 Strategic Health Authorities (which manifestly they would not), and the Health Service Ombudsman would not be swamped with complaints.

How the Changes will Build on the Work Already Undertaken by Strategic Health Authorities in Reviewing Criteria for NHS Continuing Care and Developing Policies Some SHAs have worked hard to produce what they believe to be fair criteria and work tools. In other areas the guidance and directions from the Department of Health, (although we believe these to be inherently weak), and the excellent reports of the Health Service Ombudsman, have been largely retained by “the few” and not disseminated to “the many”. The direction to the new Strategic Health Authorities (SHAs) to have one set of eligibility criteria operating throughout their area did not necessarily produce a desirable result. For instance, in Shropshire and StaVordshire, a careful process begun by the then Shropshire Primary Care Trust, in which they consulted with all interested parties including care home providers and local lawyers, was brought to an abrupt halt and unacceptably restrictive criteria were introduced which brought consternation to all who had been involved in the earlier deliberations and have meant that thoughtful members of independent review panels have been horrified by the decisions which they have been forced to make, refusing patients, with primary health needs, the NHS Continuing Health care (CHC) funding to which they are clearly entitled. Providing National Criteria which are understandable and workable and which harmonise with registered nursing care by a registered nurse is the only way forward.

Whether the Review of Past Funding Decisions has Succeeded in Addressing the Needs of Patients Wrongly Denied NHS Funding for Their Long Term Care The failings of some SHAs and PCTs revolve around a lack of awareness and understanding of the case law, its application and how NHS Continuing Health care fits in with nursing care by a registered nurse. SFE members are constantly being reminded of the lack of awareness of NHS (CHC) funding amongst the “front rank” members of the medical and social care professions in hospital and in the community. Until GPs, practice nurses, hospital doctors and nurses, social workers and all related staV receive information about NHS CHC funding as an integral part of their training, the fact that, in England, if you are sick with primary health care needs, you remain the responsibility of the NHS, remains a closely guarded “secret” and it is sometimes hard to believe that this is not deliberate. Some illustrations of the ongoing problems are as follows: (i) A hospital social worker tells Mr A, a 28 year old man, that his mother Mrs A, who has a brain tumour, is terminally ill and now needs a place in a nursing home and will have to sell her house to fund her care. “There may be another way, but Mr A will need to see a solicitor about it”. (December 2003). 3012251021 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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(ii) A solicitor is approached by Mr B whose mother Mrs B is in hospital. Mr B thinks that her case has been to the “panel” but does not understand what this means as no-one has explained it. There is no written evidence of the panel’s decision and no advice about what review can be conducted if requested. (October 2004). (iii) An elderly patient, Miss C, moves from a residential to a nursing home because her nursing needs, which are complex, have become primary. The social worker is asked by the solicitor/attorney about NHS CHC funding. The social worker knows nothing about this and has not heard of the Coughlan case. After involvement of her solicitor, Miss C, who was rather extraordinarily banded in the medium band for “free” nursing care, is retrospectively given NHS CHC funding from the time she entered the nursing home. No mention is made of the later stages of her time at the residential home when her NEEDS changed. (November 2004). (iv) Mr D, who has severe dementia, has been in an EMI nursing home for two years. He has been consistently refused NHS CHC funding though he is easily the most “challenging” patient in the home. Eventually an Independent Review panel decides he will have funding from the end of the first year. His solicitor asks for the report from the panel and is told by the Director for Commissioning at the PCT that this is not possible. In response to a further request he says that the report is the property of the SHA and a written complaint must be made to the Chief Executive. The report is eventually produced which is very damning of the PCT. (December 2004). (v) Mrs E is terminally ill in hospital with bowel cancer. She is to receive a care package at home. The social worker in the community undertakes a community care assessment and writes a Care Plan. The patient’s husband, who himself has prostate cancer, is told that his wife’s case has been to the “panel” and that she has been refused NHS (CHC) Funding. No reasons are given either verbally or in writing and there has been no mention of a nursing assessment within the hospital. It is totally unclear what information the panel has been given upon which they have made such a decision and no indication has been given to Mr E of the possibility of complaint or review. (February 2005). One of the recommendations of the Health Service Ombudsman was that SHAs and PCTs should attempt to identify any patients in their area who may, wrongly, have been made to pay for their care, and to make appropriate recompense to them or their estate. This should have involved at least a two-fold approach. Firstly reviewing current patients in care homes or receiving care packages at home, and secondly, with respect to patients who have died, going through medical records and raising public awareness with publicity through the press and media. Local review procedures. Any reviews conducted would inevitably be assessing patients’ needs against the relevant local eligibility criteria. We believe that the criteria in many SHAs, are too restrictive and would, if tested by the Courts, be found to be unlawful in the light of Government guidance, the Coughlan decision and the Health Service Ombudsman’s recommendations. Logically therefore, many patients with primary health needs who were reviewed have been refused. SHAs have taken inconsistent approaches to the review process. Restitution to the estates of those patients who have been denied NHS Continuing Health Care Funding would inevitably be inadequate unless there was rigorous publicity, arguably at both local and national level. We are not aware of any such robust publicity campaign either from central government or local health bodies and, logically, this must mean that there are still estates which have been significantly smaller than they should have been because family members and executors of deceased patients remain ignorant, along with most of the members of the general public, of the entitlement for NHS CHC Funding.

What further developments are required to support the implementation of a national framework? It is vital that in developing new national criteria, community care lawyers with expertise in health and social care, must have an input to ensure that future patients are assessed against truly fair criteria. It makes no sense to produce criteria for England, which are open to immediate challenge. Though the 28 SHAs had legal advice, we believe that there was no monitoring to see how “good” such advice was, or, where such advice was given, whether it was followed. Indeed in one case we believe it definitely was not. National Criteria cannot stand alone and must be supported by: — A set of accredited assessment tools and good practice guidance to support the criteria so that each SHA and PCT is not required to “reinvent the wheel”. This should include clear case studies covering some of the major illnesses such as dementia, motor neurone disease and multiple sclerosis. — Publicity to the public generally. — Training for all health and social care professionals, both in hospital and in the community, to “demystify” this area and bring it into the acceptable remit of the NHS and ensure that the decision maker is accountable for the decision with clear reasons being provided in writing. 3012251021 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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— Changes to the Guidance on registered nursing care by a registered nurse, LAC (2001) 26, so there is no similar terminology used without a clear and meaningful definition. Presently under such guidance a person in the high band because of the definition should, to all intents and purposes, have primary health needs and should be fully funded by the NHS. — Changes to the case studies in the Nursing Care Handbook as the cases indicate that some people who should qualify for full NHS funding, are only to receive the high band. — Clarification of LAC (2003) 7 at paragraph 20, which supports the idea that there is another level of care between the higher band and being entitled to full NHS funded care. It states “In some cases, the assessment and RNCC process will identify individuals who have exceptional long-term needs for nursing care, both in amount and type, yet which do not meet local criteria for continuing health care. In these cases, the NHS has responsibility to arrange or fund the services the individual needs and should make arrangements on a case-by-case basis” The development of national criteria must clearly explain and define: — The case law. — What is ancillary and incidental. — What is a primary health care need. — What is specialist health care equipment. — When someone is terminally ill and likely to die in the near future. — What is complex, intense, unpredictable, and unstable so that it is distinguished clearly from definitions of nursing care provided by a registered nurse. We would recommend that the Health Committee consider some actual cases and see whether they would be able to determine if the person is: (i) Eligible for NHS CHC Funding, or (ii) Ineligible for NHS CHC Funding, but given the high band contribution, or (iii) Ineligible for NHS CHC Funding, but be considered, because of their stability and the predictability of their needs, to qualify only for the medium band a week. At the present time it is an absolute lottery as to how this is determined and SFE members would welcome a rigorous review of guidance in addition to all the other matters raised. February 2005

APPENDIX 12

Memorandum by Mr Andrew Shaw (CC 18) Over the last 14 months, I have acted as patient’s representative for my Mother, who was in a Cambridge Hospital for six months, after suVering a stroke at the beginning of last year (2004). When my Mother was being considered for discharge from hospital (May 2004), I applied, on her behalf, for NHS fully funded continuing health care (NHS CHC). Ten months later, my Mother’s case is still being considered, and is now with an Independent Review Panel. Our request for NHS CHC for my Mother has so far generated a large dossier of notes and correspondence, all of which have given me much insight into the workings of the NHS on the subject of Continuing Health Care. Thus, I read with great interest the Ministerial Statement on NHS continuing health care by Dr Stephen Ladyman, issued on 9 December 2004, and I oVer the following comments based on my experiences: — It is clear that many health care professionals are unaware of the DoH guidelines and legislation under the Delayed Discharges (Continuing Care) Directions 2004. — There is little understanding (by NHS health care professionals) of what constitutes a proper single point multi-discipline continuing care assessment, often confusing this with a Registered Nurse Care Contribution (RNCC) determination. (My Mother has yet to receive a proper continuing care assessment, despite several requests). — Although all SHAs’ eligibility criteria should meet government (Department of Health) guidance of 2001, and reflect the judgment made in the Coughlan case in 1999, it is clear that not all current criteria are fair and legal. If they were, then any patient with similar needs to Pamela Coughlan, would be receive NHS funded CHC from any of the 28 SHAs. — It is not suYcient for the health spokesman to claim that all current criteria are fair and legal, (even if they were). What is more important is the way in which the criteria are applied, ie they should be used to determine whether the patient’s primary needs are for health care, and not used just to determine the severity of the patient’s condition. It is clear from my experiences that the eligibility 3012251022 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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criteria of one SHA, at least, are applied too restrictively and inflexibly, and therefore, many patients (my Mother included) whose primary needs are for health care are being needlessly and unlawfully denied their right to NHS funding. — Proper review procedures (following appeal) are not observed; for example, the appeal panel chairman (in my Mother’s case) made an informal decision prior to and outside the panel’s meeting, ie without discussion. On another occasion, the appeal panel didn’t carry out a review, but produced their own version of a “continuing care assessment” based on inappropriate, irrelevant and out of date data. Furthermore, the appeal procedures are not carried out within the recommended time frame, ie14 days, but over many months. — Overall, the conduct of many health professionals with regard to the processes for requesting and obtaining NHS CHC suggests, at best, poor training and incompetence, and at worst, deliberate procrastination and secretiveness. — Whether a national framework will eliminate the long-standing problems of inconsistency and inequity, and make the Government’s policy more intelligible and fairer remains to be seen. — What is important is that there is a just and lawful approach to NHS CHC, as well as a consistent and fair one. February 2005

APPENDIX 13

Memorandum by The Continence Foundation (CC 20) The Continence Foundation submitted detailed evidence to the Royal Commission on Long-Term Care in 1998. However, since the current inquiry covers only those people who might be eligible for “continuing care”, we do not think it appropriate to repeat our evidence about the impact of incontinence in the wider population. What we would wish to remind the committee that the commonest factor leading to admission to nursing homes is incontinence5. Although we are not aware of any study showing that incontinence is most often present in people who are being considered for continuing care, it would be logical to assume that this is the case. We would, therefore, suggest that improving continence services both in the community and in care homes would reduce the pressure for people to be classified as needing continuing care. February 2005

APPENDIX 14

Memorandum by the Motor Neurone Disease Association (MND) (CC 22) 1. Few disorders are as devastating as MND. It progressively attacks the body, removing the ability to walk, talk or feed oneself, but the intellect and senses usually remain intact. There are estimated to be around 5,000 people living with MND in the UK. Half the number of people with MND die within 14 months of diagnosis. 2. Existing Department of Health Guidance on Continuing Care clearly indicates that MND is exactly the type of complex, degenerative condition that the scheme is designed for, yet currently, many people with MND are unable to obtain the continuing care to which they are entitled due to geographical variations in the interpretation and application of the eligibility rules. 3. Even when an application for continuing care is successful, the time taken for the whole process is far too long. 4. The Motor Neurone Disease (MND) Association strongly supports the Health Service Ombudsman’s call for the establishment of clear, national, minimum eligibility criteria which are understandable to health professionals and patients and carers alike. 5. There should also be a requirement for applications to be assessed to a strict timetable that takes into account the needs of people with rapidly progressive diseases. 6. Education and training should be made available to staV handling Continuing Care applications to ensure that they are familiar with the range of conditions they are likely to encounter.

5 Thom et al. (1997) “Medically recognised urinary incontinence and risks of hospitalisation, nursing home admission and mortality.” Age and Ageing 26, pp 367–374. 3012251024 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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7. The Motor Neurone Disease (MND) Association believes that continuing care should be available to everyone with MND needing it in a setting of their choice. 8. The MND Association is willing to give oral evidence to the inquiry.

2. Background 2.1 MND is a rapidly progressive neurological disease that kills three people every day in the UK. MND aVects the motor neurones (nerve cells) in the brain and spinal cord. As the motor neurones die, the muscles stop working. 2.2 It can aVect any adult at any time and leaves people unable to walk, talk, or feed themselves, but the intellect and senses usually remain unaVected. 2.3 There are currently more than 5,000 people living with MND in the UK, with a prevalence of around 7 per 100,000. 2.4 The cause of MND is unknown and there is no known cure. On average it takes 16 to 18 monthsfrom first symptoms to diagnose MND, and average life expectancy from diagnosis is just 14 months. 2.5 The MND Association is the only national organisation supporting people aVected by MND in England, Wales and Northern Ireland. Our mission is to ensure that people with MND can secure high- quality co-ordinated care and to promote research into causes and treatments. 2.6 The Association provides funding for 14 MND Care Centres across the UK providing co-ordinated care for people with the disease. The Association has published Standards of Care for MND and is currently developing guidelines for the management of the disease.

3. The Experiences of People with MND 3.1 The MND Association has a national network of Regional Care Advisers who provide advice and support to people with MND in their area. The Association also operates a telephone helpline and web- based support service that provides information to people with MND and their carers. We have knowledge of the experiences of people with MND in relation to Continuing Care from these sources. The overall picture is one of inconsistency, confusion, and delay.

3.2 Inconsistency 3.2.1 Within Greater Manchester alone, there are 12 diVerent authorities, all interpreting the criteria and implementation policy diVerently. The City of Manchester doesn’t give funding for care at all as they have a “continuing care” establishment. 3.2.2 People with MND have told us that often a Social Services-funded care package is more flexible than Continuing Care. Patients can also lose their existing care workers when care packages are transferred from Social Services to Continuing Care. This adds an additional level of unnecessary distress to people living with a terminal disease. 3.2.3 In some areas the qualifying threshold is so high it is just about impossible to achieve a high enough score to obtain Continuing Care funding, even when dead.

3.3 Delays 3.3.1 Delays in assessing claims are not just common; they appear to be the norm. Time is something that people with MND simply do not have. Half the people with MND die within 14 months of diagnosis. By the time they are in a position to be entitled to Continuing Care, they may have only a few months to live. They do not wish to spend the remaining time available to them battling with statutory service providers. 3.3.2 In one case, the Chief Executive of a PCT wrote to a person with MND informing him that he was not ill enough to be entitled to Continuing Care. The man had already died in a nursing home.

3.4 Confusion 3.4.1 We know of one lady who died just after being refused Continuing Care on the grounds that she didn’t have pressure sores or need daily visits from her GP. This was actually because of the quality of the care she was receiving in a very good nursing home. 3.4.2 There is also evidence to suggest that those people handling Continuing Care applications do not have a good enough understanding of the conditions they are likely to encounter. We are aware of cases where a request for an assessment has been questioned because the person “only has MND”. 3.4.3 Our Regional Care Advisers have also experienced apathy among Health and Social Care Professionals who are required to support applications. It appears that many are disillusioned with the amount of work that needs to be done to submit an application when such high proportions are rejected. 3012251024 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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4. MND Association Recommendations for Action 4.1 The MND Association welcomes Stephen Ladyman’s Ministerial statement of 9 December 2004 announcing the development of a national framework for Continuing Care. We regard it as long overdue. 4.2 We wholly support the six key recommendations made by the Health Service Ombudsman for England in her follow up report on NHS Funding for Long Term Care published on 16 December 2004. 4.3 However, we believe that a national framework for NHS Continuing Care will resolve the long- standing problems of inconsistency and inequality only if the rules are clearly drawn, are enforceable, and a national monitoring scheme is in place to ensure compliance. If there is excessive room for local interpretation of the guidelines, they will have failed. 4.4 There needs to be adequate funding in place to ensure that all those who meet the national criteria receive the money to which they are entitled. 4.5 In addition to establishing consistent eligibility criteria, we believe that for a national framework to succeed there must be a requirement for applications to be assessed to a strict timetable that takes into account the needs of people with rapidly progressive diseases. 4.6 Education and training should be made available to staV handling Continuing Care applications to ensure that they are familiar with the range of conditions they are likely to encounter. The MND Association would be happy to contribute to this process in relation to Motor Neurone Disease. February 2005

APPENDIX 15

Memorandum by the Parkinson’s Disease Society of the United Kingdom (CC 24)

1. The Parkinsons Disease Society 1.1 Parkinson’s Disease Society was established in 1969 and now has 30,000 members, 19,000 supporters and over 300 local branches and support groups throughout the UK. 1.2 The Society provides support, advice and information to people with Parkinson’s, their carers, families and friends, and information and professional development opportunities to health and social services professionals involved in their management and care. 1.3 Each year the Society spends more than £2 million on funding research into the cause, cure and prevention of Parkinson’s, and improvements in available treatments. The Society also develops models of good practice in service provision, such as Parkinson’s Disease Nurse Specialists community support, and campaigns for changes that will improve the lives of people aVected by Parkinson’s.

2. About Parkinson’s Disease 2.1 Parkinson’s Disease is a progressive neurological disorder. It aVects all activities of daily living including talking, walking, communication, swallowing and writing. It is estimated that 120,000 people in the UK have idiopathic Parkinson’s. That is one in 500 of the general population. Approximately 10,000 people are newly diagnosed with Parkinson’s each year in the UK. 2.2 Parkinson’s occurs as a result of a loss of cells that produce the neuro transmitter dopamine. Dopamine is one the chemical messengers that we have in the brain which enables people to perform coordinated movements. As yet it is not known why these cells die. 2.3 The three main symptoms are tremor, muscle rigidity and slowness of movement. However not everyone will experience all three. Other symptoms include a lack of facial expression, diYculties with balance, problems with an altered posture, tiredness, speech diYculties, pain and depression. Parkinson’s aVects people from any ethnic background and any age group. Most people are diagnosed over the age of 60, however younger people can also develop Parkinson’s. It is estimated that one in 20 people are diagnosed Parkinson’s under the age of 40.

3. Summary 3.1 The Parkinson’s Disease Society welcomes the inquiry into NHS continuing care as this area causes considerable concern for people with Parkinson’s disease and their families and carers. Too often we receive calls and letters outlining situations where through a lack of understanding about the impact of the disease people have been denied NHS funding for their long-term care. Historically it was diYcult to understand who was entitled to continuing NHS health care and the local eligibility criteria resulted in actual and potential injustice to some people with Parkinson’s disease and their carers who had to pay for their own care when the NHS should have paid for it. Applying for continuing care funding was on occasions a lottery. 3012251025 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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3.2 In December 2004 the Health Service Ombudsman published a report on the problems experienced by disabled and elderly people in accessing NHS funding for long term care. This revealed persistent problems at the heart of the continuing care framework and in the absence of clear and consistent national criteria for continuing care funding resulted in confusion and inequity in the way decisions were made about patients continuing health care needs.

4. Introduction 4.1 NHS continuing care is a package of care arranged and funded solely by the NHS for people who need it because of a disability, accident or illness, to address both physical and mental health needs. To be eligible for continuing NHS healthcare a person must have a complex medical condition that requires regular care and support, and/or a very specialised nursing support. 4.2 For people with Parkinson’s disease, the quality and quantity of health and social care services is of paramount importance. Parkinson’s disease is a chronic progressive neurological disease aVecting all aspects of daily living. There is as yet no cure. Treatment is predominately pharmacological and as such is associated with many misunderstood side eVects.

5. Dr Stephen Ladyman’s Ministerial Statement 5.1 The Society welcomes Dr. Stephen Ladyman’s statement on NHS continuing care. In the absence of revised national guidelines, however, the diYculties in interpretation and confusion over the distinction between continuing care and “free” nursing care remain. 5.2 The policy on who is entitled to continuing NHS healthcare is explained in local eligibility criteria. If someone is assessed as needing continuing NHS healthcare they do not have to pay any of the costs, instead the NHS pays the whole cost. The problem is that the decision on who qualifies for this funding varies across the country resulting in a postcode lottery because each strategic health authority (SHA) has its own local eligibility criteria. 5.3 The Parkinson’s Disease Society endorses the six recommendations from the Health Service Ombudsman report in December 2004, in particular urging the establishment of clear, national minimum eligibility criteria which are understood by health professionals, patients and carers alike, to end the postcode lottery for people with long-term conditions.

6. Criteria for NHS Continuing Care and Developing SHA-wide policies 6.1 The fundamental problem with the NHS continuing framework as it currently stands is that in most cases people in later stages of progressive neurological conditions are not recognised as entitled to full NHS continuing care. Consequently many of their support and care services which are provided by Social Services are chargeable via means testing. Similarly people going into residential or nursing home care on a respite or permanent basis will also pay for this via a means test. The inequality experienced by people with Parkinson’s disease is apparent when compared to someone with a “recognised” illness. 6.2 It appears that the care path that people enter, either primarily NHS, or through social care, heavily influences their access/eligibility to NHS provision including palliative care. In order to ensure equality, it is crucial that continuing health care is provided according to need and not disease label, age of the patient or their history of NHS involvement. Care for people with Parkinson’s disease should clearly be a continuing health care responsibility. We are delighted that the existing 95 health authority criteria have been condensed into the 28 Strategic Health Authority criteria. We urge that it is essential that the Strategic Health Authorities review their existing criteria to ensure that it is applied consistently and that the implementation guidance builds upon good practice.

7. Review of Past Funding Decisions to Readdress the Consequences Where Patients Were Wrongly Denied Funding 7.1 We welcome that the Department of Health have provided restitution to individuals who were wrongfully denied funding for their long-term care, however we have heard of situations where individuals incurred delays from NHS bodies in paying money owed to them, and where some havebeen re-assessed as being incorrectly denied money. 7.2 We would urge that the new framework is explicitly clear and that the supporting guidance leaves no room for error in the implementation of the criteria. Individuals must not be unfairly denied funding for an essential service that they require. 7.3 The Society welcomes that Strategic Health Authorities must review their eligibility criteria to ensure that they are lawful and consistent, and both current and past cases must be reviewed to ensure that individuals are reimbursed when they have been unfairly denied continuing care. 3012251025 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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8. Further Developments to Support the Implementation of a National Framework 8.1 We welcome the development of a national framework for assessing continuing care, but there still remains the challenge of implementation and interpretation of the criteria. We would recommend the development of assessment tools and good practice guidance to support the implementation of the criteria. 8.2 It is essential that the assessments consider the issues of stability or complexity or intensity of need from all the perspectives and over the full period, and not at a single point in time. 8.3 NHS bodies need further support, guidance and development from the DOH to expand local capacity and to ensure all new requests for continuing care are decided promptly and properly and according to a national framework. February 2005

APPENDIX 16

Memorandum by the Relatives and Residents Association (RRA) (CC 25)

Introduction This memorandum is submitted by the Relatives & Residents Association, a national charity established to promote the interests and welfare of older people in long-term care and to provide information and advice to their relatives who support them. The RRA operates a daily advice phone line, supports local groups of relatives and residents, works with staV in care homes to improve quality of life for residents, runs projects and comments on policy developments aVecting older people in relation to long term care.

EVIDENCE

1. The Ministerial Statement on NHS Continuing Care—9 December 2004 The RRA welcomes the statement by the Minister announcing that national framework setting out criteria for assessing eligibility for continuous care will be drawn up. It will go some way to iron out the already-acknowledged regional inconsistencies that many people have experienced in the past. However other problems remain. On the basis of experiences described by callers to the RRA advice line, there is a widespread lack of correct information about the complexities of long-term care. Particular concerns are: — People remain confused about the diVerence between continuing care and the highest band of registered nursing care. — There is a lack of clearly expressed information that people can understand about the eligibility criteria currently in use. — Once awarded fully-funded NHS care, they worry about the possibility of being denied NHS funding on subsequent reassessment of needs and about the unplanned financial consequences this might have (leading to fears that patients or families may be faced with unplanned financial burdens, retrospective responsibility for payment of fees and/or care home relocation/eviction). — Health and social services staV continue to provide wrong information to relatives and residents about eligibility for continuing care and/or highest band registered nursing care. — Although social services departments are responsible for financial assessments which must be done separately from needs assessment, some hospital discharge teams, wrongly, are taking financial circumstances into account at the same time as making an assessment of needs. — There is a burning sense of injustice about the financial burdens experienced by those who narrowly miss eligibility for continuing care.

2. How the Changes Will Build on the Work Already Undertaken by SHAsinReviewing Criteria for NHS Continuing Care and Developing Policies The RRA hopes that the introduction of national eligibility criteria will provide an opportunity for local authorities, local care providers and local health organisations to improve the quality of baseline needs assessments, care management procedures and record-keeping. However, national guidance (though not national eligibility criteria) has existed for some time and yet this has not prevented the inconsistencies and inequities that have arisen. It is also a matter for concern that the completion of the SHA reviews has been impeded by poor quality data at local level. This reflects a fundamental lack of regard for the older people whose needs were being assessed. The RRA hopes that all relevant agencies, including the Commission for Social Care Inspection, the Healthcare Commission and the OYce of the Ombudsman, will take note of these evident failings and take steps to make, or call for, radical improvements. 3012251026 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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3. Whether the Review of Past Funding Decisions has Succeeded in Addressing the Needs of Patients Wrongly Denied NHS Funding for Their Long-term Care Reports from the Ombudsman reveal the scale of the injustice that thousands of older people have suVered. Many of these individuals have died and have not had their wrongs righted. In other cases, the consequences of the initial assessment decisions have been so far-reaching that they can never be reversed even if the older person is still alive. Individuals have been placed in inappropriate care-settings and denied access to the sort of health care necessary to meet their needs and at cost to their longer-term health and welfare. Houses have been sold and capital has been spent. As well as the financial losses involved, emotional and other psychological attachments have been broken. Sometimes family members have been made more vulnerable as a consequence. Furthermore, the Ombudsman has so far only been looking at past decisions; the fear is that wrong decisions are continuing to be made and yet the possibility of discovering them is negligible. The Healthcare Commission complaints system is overloaded and complaints about continuing care decisions are simply not being investigated—yet these are cases which need to be investigated urgently. Future health care, social and living arrangements as well as financial circumstances rest on the assessment decision and where a wrong decision has been made it needs reversing as quickly as possible. Worse still, the complainant may be old and unlikely to live for the length of time it takes to investigate the complaint. As with past cases, the injustices will never be resolved for those individuals.

4. What Further Developments Are Required to Support the Implementation of a National Framework The following are required: — Robust training, repeated and updated regularly, in applying the new criteria for all those health and social care staV involved in assessment. — Clear guidance on recording the assessment decision-making process and outcome to provide an audit trail should complaints be made. — Copies of the assessment written in clear jargon-free language to be provided to users and carers. — Guidance and training for Healthcare Commission reviewers to ensure they assess NHS performance on implementing the new national framework. — Guidance and training for CSCI inspectors in ensuring that they assess social services departments’ performance on implementing the new national framework. — Guidance and training for CSCI inspectors in ensuring that care homes fulfil their role in monitoring changing health care needs. — Active liaison between all agencies involved in all stages of assessment and review, including the OYce of the Ombudsman. — Production of information about the national framework that is accurate, comprehensive and written in lay terms and is made widely accessible to the general public. — Evaluation of the implementation of the national framework. February 2005

APPENDIX 17

Memorandum by Help the Aged (CC 28)

Summary Help the Aged’s central recommendation to the Committee is that the Government’s activity to develop a new national framework for NHS Continuing Care should work towards the development of a single set of national eligibility criteria for NHS Continuing Care, supported by a single process for assessing eligibility. There must be reliable and comprehensive information available to patients and professionals to provide clear guidance on assessing needs and the funding of care, encompassing the Single Assessment Process for Older People, the Registered Nursing Care Contribution process, and NHS Continuing Care. In this submission, Help the Aged restricts its comments to the specific issue of NHS Continuing Care. However, it is not possible to separate the issues relating to NHS Continuing Care from our position concerning free personal care, which remains unchanged. We believe that if the Government committed to providing free care on the basis of need, then some of the diYculties relating to Continuing Care could be significantly alleviated as the debate about which agency is responsible for diVerent aspects of care receded. We would encourage the Health Select Committee to revisit the wider questions relating to paying for care, and to the division between health and social care, in a future inquiry. 3012251027 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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Our recommendations can be summarised as follows: — The national framework for NHS Continuing Care must address older people’s access to reliable information and advice. — There should be a single set of national eligibility criteria for NHS Continuing Care, supported by a consistent approach to the assessment of need and the tools to establish eligibility against the criteria. — The national framework for NHS Continuing Care should also address the relationship with the RNCC determination. — The national framework must address the assessment of eligibility, not just the criteria itself. — The process of requesting a review must be simplified. — Older people and their families need access to better quality information on their potential entitlement for NHS Continuing Care funding. — Attention should be given to those individuals who live in their own homes or in residential care whose needs may, over time, develop to meet the criteria for NHS Continuing Care. — The panels set up to make decisions about cases need to operate in an open and transparent way, and there should be clarity about the role that individual patients and their families can play in the work of the panels relating to their own case. — Strategic Health Authorities should be encouraged to take a proactive approach to identifying those older people who may already be, or who may in the near future, become eligible for NHS Continuing Care. — The situation of residents of care homes who are supported by the local authority should be examined as part of the Government’s work around the national framework. — The Government should address the position of self funding residents and those living in independent sector care homes in relation to the current non-application of the Human Rights Act. — The RNCC bandings must be consistent with the new framework for NHS Continuing Care. — Consideration should be given to how the system for NHS Continuing Care can be reformed so that it no longer rewards dependency and penalises independence. — Patients who are eligible for NHS Continuing Care must have real choice in where and how their care is provided. — Individuals should not be required to “top up” the NHS contribution towards their NHS Continuing Care costs in order to exercise some choices about their care. — All frontline health and social care staV should receive training on NHS Continuing Care, and should understand their role. — Stronger links must be made between the Single Assessment Process for Older People and determination of eligibility for NHS Continuing Care. — Patients and their families should have access to independent advice and support where needed to ensure that they receive what they are entitled to.

1. Introduction 1.1 Help the Aged’s vision is of a future where older people are highly valued, have lives that are richer and voices that are heard. Working with older people, we champion their needs so that they can better their lives. Through research, campaigning and fundraising we develop solutions, drive activities and inspire others to do the same. Our strategy is to attack and remove the major barriers to active and fulfilled later lives, and to concentrate our eVorts on those older people most at risk of disadvantage or social exclusion. Our four urgent priorities are combating poverty; reducing isolation; defeating ageism; and promoting quality in care. 1.2 Help the Aged does this by providing a range of direct services in the UK to help older people live active and independent lives, funding vital research into the illnesses and social context of ageing, and funding international activities. 1.3 Help the Aged welcomes the Health Select Committee Inquiry into NHS Continuing Care, which has been an issue of great concern to some of the most vulnerable older people, and their families, for several years. Equal access to care and support is a cornerstone of the National Health Service. Yet access to NHS Continuing Care and the funding that goes with it appears to be anything but equitable. 1.4 Help the Aged has welcomed the steps taken by the Alzheimer’s Society in producing the information booklet, When does the NHS pay for care? Guidance on eligibility for continuing NHS health care funding in England and how to appeal if it is not awarded, which goes some way to addressing the widespread confusion and uncertainty about what individuals with complex healthcare needs are entitled to, and how individuals should go about securing that entitlement. The availability of and access to reliable and accurate information is a major concern in relation to access to NHS Continuing Care funding. 3012251027 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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2. The Written Ministerial Statement on NHS Continuing Care Issued by Dr Stephen Ladyman on 9December 2004 2.1 Help the Aged has cautiously welcomed the statement by the Minister made on the 9 December 2004. In our view, this statement indicated a subtle yet significant change in the approach being taken by the Government in relation to NHS Continuing Care, and a recognition that the existence of 28 diVerent criteria with diVerent systems for assessing eligibility against those criteria is unnecessarily confusing for patients and practitioners. Help the Aged has for some time stated our belief that there should be a single set of eligibility criteria for the whole country, supported by an eVective system for assessing eligibility against the criteria. The Minister’s decision to announce the commissioning of a national approach to the assessment for fully funded NHS Continuing Care is therefore, in our view, a significant, if only initial, step in the right direction. 2.2 We have also welcomed the Minister’s recognition of the importance of making the process “easier to understand for practitioners and patients alike.” There is considerable uncertainty and confusion among older people and their families about what their rights and entitlements to NHS Continuing Care might be. Help the Aged believes that improving older people’s access to reliable information and advice concerning NHS Continuing Care is an essential part of the solution to such confusion. 2.3 In our view, the case for a single set of eligibility criteria to be used by all Strategic Health Authorities is compelling. Such an approach would help to avoid a repeat of past mistakes in the steps taken by the NHS to meet its statutory obligations to provide care and support to those with complex health needs. However, a single set of eligibility criteria is only one part of the solution to the challenges posed by NHS Continuing Care, albeit a crucial one. 2.4 The Minister’s statement indicates the Government’s view that the 28 current sets of eligibility criteria are compliant with the law. Help the Aged cannot comment on whether this is the case. However, we are concerned that even if the criteria themselves are compliant with the law, the systems in place to assess whether an individual meets the criteria vary widely across Strategic Health Authorities. There is certainly anecdotal evidence to suggest that the tools being used in some locations raise the threshold for eligibility even beyond that set out by the criteria themselves. Help the Aged is concerned that the assessment process itself is being used inappropriately as a mechanism to “gate-keep” access to NHS Continuing Care funding. 2.5 Help the Aged is also concerned that the Minister does not appear to have made explicit the connection between the determination of Registered Nursing Care Contribution (RNCC) for residents of care homes providing nursing care and the assessment for NHS Continuing Care funding. Older people and their families are often confused about the relationship between a decision about their eligibility for NHS Continuing Care, and the determination of the appropriate level of nursing care funding to meet their assessed needs. We return to this point in greater detail below. 2.6 In summary, Help the Aged recommends: — The national framework for NHS Continuing Care must address older people’s access to reliable information and advice. — There should be a single set of national eligibility criteria for NHS Continuing Care, supported by a consistent approach to the assessment of need and the tools to establish eligibility against the criteria. — The national framework for NHS Continuing Care should also address the relationship with the RNCC determination.

3. How the Changes Will Build Upon the Work Already Undertaken by Strategic Health Authorities in Reviewing Criteria for NHS Continuing Care and Developing Policies 3.1 Help the Aged acknowledges the steps being taken by Strategic Health Authorities in light of recent attention to the issue from the Government, the Health Service Ombudsman and the media. We also acknowledge the work that has already been done by Strategic Health Authorities to review their criteria and to ensure that they are, to the best of their knowledge, compliant with the legal requirements. 3.2 The streamlining of the local criteria in operation as a consequence of Shifting the Balance of Power from 95 to 28 (reflecting the number of Strategic Health Authorities) was also a welcome move in alleviating the confusion caused by the existence of so many diVerent sets of criteria. 3.3 However, we believe that in many instances, Strategic Health Authorities have concentrated their activities on the local criteria in isolation from the mechanisms with which eligibility against the criteria is assessed. It is therefore vital that the new national framework for NHS Continuing Care also addresses the process of assessment against the criteria, and not just the criteria themselves. 3.4 It appears that many Strategic Health Authorities have responded to requests to re-examine cases brought to their attention by older people or their families, rather than taking a proactive approach to identifying those people who may have been unfairly meeting the costs of their own care. Many older people and their families are often uncertain about whether they have been assessed against local NHS Continuing 3012251027 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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Care criteria, and indeed what the outcome might have been. Others, by contrast, find themselves in receipt of NHS Continuing Care without a need to request it themselves. Such a contrast in access to an assessment against the criteria is, in our view, unacceptable. 3.5 We have been concerned for some time about the complexity of the system for patients and their families who request a review of their care against the local criteria. The process can seem daunting, and the time and energy required can deter some people from pursuing their potential entitlement. It is not uncommon for the first hurdle to be establishing what the local criteria might be, and how to go about requesting a review. Individuals are often unclear of what their rights are, and often find it diYcult to access information on the local process. The need to negotiate a path through such a complex system, of course, is often coming at a time of great stress to the individual and their family. 3.6 The intervention of the Health Service Ombudsman in recent years on this issue has been very welcome, and has provided individuals with a source of additional advice and support. In Help the Aged’s view, it is vital to improve access to information and advice and to increase the transparency at a local level around eligibility for NHS Continuing Care. Better communication and openness would go a long way towards removing some of the mystery concerning eligibility, and reducing the pressure on individuals trying to establish whether they are entitled to NHS Continuing Care. 3.7 Help the Aged has also welcomed the steps being taken by the NHS to improve the mechanisms by which new cases are assessed against local criteria, the majority of whom are in acute hospital settings. However, we remain concerned about those individuals who are less visible to the system, such as those in their own homes or in residential care whose conditions may worsen over time to the point at which they may become eligible for NHS Continuing Care. In these circumstances, the individual’s chances of being picked up by the system depends almost entirely on those NHS professionals who provide their care, such as general practitioners, among whom the level of awareness about NHS Continuing Care is much lower than those care professionals who are perhaps dealing with such cases on a more regular basis (such as those working in care homes providing nursing care, or in hospital settings). 3.8 Help the Aged is also concerned about the composition of, and decisions made by, panels set up to review cases and to reach a decision about eligibility. We share the concerns that in some instances, these panels appear to be overturning the advice and recommendations of healthcare professionals, including nurses. There is also considerable inconsistency in whether individual patients and/or their families can attend such panels or contribute towards them in any way. In our view, there must be a national approach to the operation of such panels as a matter of urgency. 3.9 In summary, Help the Aged recommends: — The national framework must address the assessment of eligibility, not just the criteria itself. — The process of requesting a review must be simplified. — Older people and their families need access to better quality information on their potential entitlement for NHS Continuing Care funding. — Attention should be given to those individuals who live in their own homes or in residential care whose needs may, over time, develop to meet the criteria for NHS Continuing Care. — The panels set up to make decisions about cases need to operate in an open and transparent way, and there should be clarity about the role that individual patients and their families can play in the work of the panels relating to their own case.

4. Whether the Review of Past Funding Decisions Has Succeeded in Addressing the Needs of Patients Wrongly Denied NHS Funding for Their Long Term Care 4.1 Help the Aged acknowledges that the retrospective review of past funding decisions has alleviated the circumstances of those who have subsequently been found to have been wrongly denied NHS funding for their care, and we recognise the scale of the challenge facing Strategic Health Authorities. However, some areas have taken a more proactive approach to the review process than others. 4.2 We remain concerned that many of the reviews were initiated by individuals or their families approaching the Strategic Health Authority to request a review of their eligibility, rather than as a result of the actions of the Authorities in proactively identifying cases. This suggests that there may be large numbers of individuals and cases who are either unaware of their potential entitlement, or who have otherwise been “put oV” from requesting a review. 4.3 The position of care home residents already supported by the local authority is also in need of further attention. Help the Aged shares the concern expressed by the Nursing Home Fees Agency and others about the individuals who may have unfairly contributed their pensions or benefits towards the costs of care which should have been provided by the NHS. The review process has, to date, concentrated on those individuals who have been financing the costs of their own care (ie “self funders”). 3012251027 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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4.4 Self funding residents of care homes providing nursing care, the majority of which are in the independent sector, are also excluded from the protections aVorded to others through the Human Rights Act. Help the Aged has highlighted these issues elsewhere,6 but believes that in the context of NHS Continuing Care, it further underlines the importance of a resolution to the non-applicability of the Human Rights Act to independent sector care homes. 4.5 A decision about an individual’s eligibility for NHS Continuing Care is often only taken at a point of crisis, such as admission to and discharge from hospital. The mechanisms by which a person’s slow and progressive decline can be closely monitored and measured against the local criteria is much less clearly defined. Help the Aged is concerned that many people may be going unnoticed by the NHS despite becoming eligible for NHS Continuing Care as a result of such a decline, particularly among those older people who may be living in either their own homes, or in residential care. In our view, it is therefore essential for there to be close connections between the implementation of the Single Assessment Process for Older People and eligibility for NHS Continuing Care. 4.6 In summary, Help the Aged recommends: — Strategic Health Authorities should be encouraged to take a proactive approach to identifying those older people who may already be, or who may in the near future, become eligible for NHS Continuing Care. — The situation of residents of care homes who are supported by the local authority should be examined as part of the Government’s work around the national framework. — The Government should address the position of self funding residents and those living in independent sector care homes in relation to the current non-application of the Human Rights Act.

5. What Further Developments Are Required to Support the Implementation of a National Framework 5.1 Help the Aged believes that it is essential for the Department of Health’s work on the national framework to take account of the connection between the RNCC determination and the assessment for eligibility for NHS funded Continuing Care. In particular, the Government should re-examine the RNCC bandings to ensure that they are consistent with the new national framework for Continuing Care, and that patients and professionals are clear about the inter-relationship between the two processes. In particular, the relationship between the highest band of nursing care funding and eligibility for NHS Continuing Care is the cause of much confusion among older people and their families, and indeed among some professionals. Some of the cases which were subsequently awarded NHS Continuing Care funding were initially identified as being only eligible for the middle or high band of funded nursing care. 5.2 We are also concerned that the current system rewards dependency, and fails to incentivise recovery or rehabilitation. There is no incentive for individuals, care providers or professionals to improve a person’s overall health and wellbeing, or indeed to leave a hospital bed, as the individual would stand to lose an entitlement to NHS funding. In Help the Aged’s view, it is only by delivering free personal care that this anomaly could adequately be addressed. 5.3 Similarly, there is no incentive on the part of care home providers to request a review of an individual resident’s eligibility against local NHS Continuing Care criteria. Care home providers are a vital part of the system for ensuring that appropriate referrals to an assessment against NHS Continuing Care criteria are made, yet are currently underutilised. In many instances, the level of fees paid by the NHS is much lower than the market rate for a place in a care home providing nursing. A resident who moves from being a self funder to being eligible for NHS Continuing Care may be faced with the prospect of having to move to less expensive accommodation. Moving such vulnerable and frail patients in such a way increases the risk of further damaging their health and wellbeing. 5.4 Help the Aged is also concerned that individuals who are eligible for NHS Continuing Care often do not have the same benefits of choice in where and how their care will be delivered. The Government is committed to extending principles of choice to the health care system, and yet there is a real danger that such choice may exclude those with continuing healthcare needs. We are deeply concerned about the prospect of individuals being expected to “top up” fees which are over and above what the NHS would pay in a care home. Such a situation would simply replicate the existing inequities that aVect large numbers of local authority funded residents in care homes. 5.5 The Health Service Ombudsman has highlighted the issue of training for health and social care staV in recognising the signals that an individual may now be eligible for NHS Continuing Care. Help the Aged supports this recommendation, and believes that comprehensive training must be available to all staV working with older people in institutional settings (such as hospitals and care homes) and in the community (such as social care workers, GPs and district nurses).

6 Harding, T. & Gould, J. (2003) Memorandum on older people and human rights. London: Help the Aged. 3012251027 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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5.6 Help the Aged believes that it is vital to clarify the connection between the Single Assessment Process for older people and assessment of eligibility against NHS Continuing Care criteria. The Single Assessment Process must ensure that (a) an individual’s needs are recognised and assessed, (b) that an appropriate package of care is developed that responds to all the needs of the person (not just their medical needs), and (c) that the care is funded appropriately. The NHS and local councils should be encouraged to strengthen the connections between the two processes, as a means to improving the mechanisms by which changes in a person’s condition can be regularly reviewed and monitored, and can where necessary trigger the automatic entitlement to NHS Continuing Care. 5.7 We also believe that individuals and their families should have access to better information, advice and support around their potential eligibility for NHS Continuing Care, as a means to remove the barriers which currently exclude people from the system. Where necessary, this may involve the need for independent advocacy to ensure that a person is able to participate fully in the process, and to ensure that an individual receives what they are entitled to. In some local areas, such services are provided by the voluntary sector, and provide a vital resource in ensuring that older people and their families have access to information and support to obtain their entitlements. This is particularly important in circumstances in which the individual may not have the capacity to pursue their own case. 5.8 In summary, Help the Aged recommends: — The RNCC bandings must be consistent with the new framework for NHS Continuing Care. — Consideration should be given to how the system for NHS Continuing Care can be reformed so that it no longer rewards dependency and penalises independence. — Patients who are eligible for NHS Continuing Care must have real choice in where and how their care is provided. — Individuals should not be required to “top up” the NHS contribution towards their NHS Continuing Care costs in order to exercise some choices about their care. — All frontline health and social care staV should receive training on NHS Continuing Care, and should understand their role. — Stronger links must be made between the Single Assessment Process for Older People and determination of eligibility for NHS Continuing Care. — Patients and their families should have access to independent advice and support where needed to ensure that they receive what they are entitled to. February 2005

APPENDIX 18

Memorandum by Help the Hospices (CC 31)

1. Introduction

Help the Hospices—the national charity for the hospice movement—welcomes the Health Select Committee’s inquiry into Continuing Care. In this submission, we provide a brief introduction to the hospice movement and go on to address the issues raised by the Committee in the terms of reference, putting forward proposals for the Committee’s consideration. The focus of our response to this inquiry is on the issues that Help the Hospices would like the Government to address in developing a national framework for fully funded NHS Continuing Care. Help the Hospices supports hospices in the UK through grant-aid; education; training; information and advice. We also act as the national voice for the 188 adults’ and children’s hospices run by local charities (known as “independent” hospices). These services provide 72%7 of inpatient hospice care in the UK along with a significant proportion of those services provided in day centres and in patients’ homes. This submission has been put together following consultation with independent hospices and is informed by our ongoing discussions with hospice staV, trustees and volunteers. Help the Hospices represents independent hospices across the UK, but our proposals in this submission relate to England as this is the scope of the Health Committee’s inquiry.

7 Taken from figures given in the Hospice Directory 2004, published by hospice information. 3012251031 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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2. Response to Terms of Reference

What further developments are required to support the implementation of a national framework? 2.1 Strict Life Time Expectancies Help the Hospices has concerns that the fully funded NHS Continuing Care system is not working as it should. Help the Hospices main concern is Strategic Health Authorities Criteria for Continuing Care stating strict life time expectancies. Restricted time limits are inappropriate for people nearing the end of life because prognosis and assessment is very diYcult. National Guidance makes clear that application of time limits is not appropriate. Section 18 from the Department of Health guidance circular HSC 2001/015: LAC (2001) 18 “Continuing Care: NHS and Local Councils’ responsibilities, regarding end stage terminal illness states that the setting of care should not be the sole determinant of eligibility and that patients who require palliative care and whose prognosis is that they are likely to die in the near future should be able to choose to remain in NHS funded accommodation or to a return home with appropriate support. This includes hospice and hospital care, Nursing Home care or care in one’s own home. Patients may also require episodes of palliative care to deal with complex situations. The number of episodes required will be unpredictable and applications of time limits for this care are not appropriate. The Regulatory Impact Unit announced in making a diVerence, Reducing Burdens in hospitals—July 2002 that Strategic Health Authorities would be aligning continuing care in October 2002 to meet national guidelines. In April 2004 Help the Hospices wrote to all 27 Strategic Health Authorities requesting a copy of their continuing care criteria. We received 18 responses. The criteria sent from six Strategic Health Authorities stated restricted life time expectancies. The timescales mentioned ranged from the next few days to 12 weeks. Details of time scales can be found in Annex A. One set of criteria, which stated restricted life time expectancies stated “to die in the near future, whilst not being prescriptive near future will be around four to eight weeks”. Another set of criteria stated “A person in the final stages of a terminal illness and is likely to die in the near future. Explanation: A person who qualifies under this condition will have been assessed by the doctor responsible for their care and will have been given a prognosis that they are likely to die within eight weeks”. We are concerned that by saying that an absolute time scale is not appropriate, but then stating restricted life time expectancy, the time scale stated will be put in to practice locally. The timescales identified in the criteria make for very inconsistent local practices. As a Social Work Manager from an independent Hospice said to Help the Hospices “Any co-ordination would be great. We work across various PCT’s all with diVerent criteria!!” This means that hospices working across several Strategic Health Authorities are working with very diVerent guidelines and criteria.

Help the Hospices recommends in developing a national framework for continuing care, the Government should ensure that Strategic Health Authorities remove restricted life time expectancies from their criteria. 2.2 The need to consider specific issues aVecting those at the end of life. Help the Hospices held a workshop on continuing care in October 2003. Since this time hospices have been feeding in to us issues they are experiencing locally in accessing continuing care. One issue brought to our attention was the local PCT running out of continuing care funding. One hospice colleague told Help the Hospices that “the local PCT had run out of funding for continuing care and patients were routinely now being transferred to local community hospitals and the Local Authority was funding care packages which were not really their responsibility to help out”. Further problems hospice colleagues are encountering include, lack of carer availability, lack of Nursing Home bed availability, lack of equipment availability, lack of provision for young people, skills of workforce lacking, issues around the quality of care available due to a national staYng crisis both in the community and nursing homes. Particular problems have been reported when trying to access continuing care for patients in the community. Problems include slow service and lack of equipment. Speed of assessment, decision-making, funding authorisation and service provision is too cumbersome and slow to meet the needs of people near the end of their lives. Government believes that people should be able to die in the place of their choice. However these reoccurring problems often prevent people nearing the end of life from doing just that. At the workshop Help the Hospices held on Continuing Care in October 2003 staV from independent hospices told us that patients often died before assessment took place or services were provided. Speed of decision-making needs improving. Patients miss their short “window of opportunity” to be moved to their preferred destination to die. Help the Hospices recommends that any national framework for fully funded NHS continuing care needs to consider the specific needs of people nearing the end of life. February 2005 3012251031 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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Annex A

CONTINUING CARE SUMMARY Following a discussion on Delayed Discharges at the IHRC VSSG meeting in April Help the Hospices wrote to all 27 Strategic Health Authorities requesting a copy of their continuing care criteria. Draft criteria in 2002 had stated restricted life time expectancies. National guidance states that this should not be in place. The Regulatory Impact Unit announced in Making a diVerence, Reducing burden in hospitals—July 2002, that Strategic Health Authorities would be aligning continuing care in October 2002. To date Help the Hospices have received 18 responses. Attached is a summary of the information we have received.

Cheshire and Merseyside Page 4—Eligibility Criteria—The person is in the final stages of a terminal illness, whereby medical opinion identifies that the patient is on a progressive state of decline and life expectancy is likely to be only days, weeks or months.

South Yorkshire Page 7—Where following a multidisciplinary assessment the individual is identified as having advanced active progressive life-threatening disease: their prognosis is expected to be death in days to weeks rather than weeks to months.

Shropshire and StaVordshire No time scale mentioned.

Bedford and Hertfordshire Page 9—criterion 3—End stage Terminal illness—Patient falls in to this criterion if they are in a progressive state of decline, for example, with a life expectancy of less than three months.

North East London Page 4—The individual is in the final stages of a diagnosed terminal illness and is likely to die in the near future.

Leicestershire, Northamptonshire and Rutland Section 2—page 7 of 15—The individual is in the final stages of a terminal illness and is likely to die in the near future.

West Midlands South Section 2—Eligibility Criteria—Where an individual is in the final stages of a terminal illness and likely to die in the near future. Section 3—Putting Policy into practice—Palliative care—page 8 A terminally ill patient may meet the eligibility test in two ways (a) If they are “in the final stages of a terminal illness and likely to die in the near future”. There is no clear definition of what consists a final stage of a terminal illness for the purposes of eligibility for this criterion, but in practice, a time period of between four to six weeks will be taken as a yardstick for this test.

Essex Eligibility criteria—Page 14 3. The definition of being terminally ill is if someone is expected to die within three months. Whilst this aVords a measure of judgement, if the person has an illness as a result of which there is less than a 50% chance of surviving beyond three months, it should be said that the person is expected to die within three months. 7. The three-month prognosis should not be applied too rigidly. It may be that a person who it was thought would die within three months and is placed in a Health setting actually does live longer. In that case, the Health service will continue to accept responsibility so long as death is expected to occur in the short term. 3012251031 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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Dorset and Somerset

Eligibility criteria The individual is in the final stages of a terminal illness and is likely to die in the near future

North and East Yorkshire & Northern Lincolnshire

Page 12—Someone in the very final stages of a terminal illness and is very likely to die in the near future... As a rough guide someone in the very final stages of a terminal illness and very likely to die in the near future is considered where it can be measured in days/weeks rather than months and the prognosis should be confirmed by the patient’s clinical lead.

County Durham and Tees Valley

Eligibility—The individual is in the final stages of a diagnosed terminal illness and is likely to die in the near future.

Greater Manchester

Eligibility—The service user is experiencing the end of life of a terminal illness and is not expected to live for a long time. “end of a terminal illness” Stated by a specialist or a multidisciplinary team to be very close to death. It is not possible or appropriate to be prescriptive about a time scale for this.

Hampshire and Isle of Wight

Eligibility criteria—The individual is in the final stages of a terminal illness and is likely to die in the near future, whilst not being prescriptive “near future” will be around 4–8 weeks.

Northumberland, Tyne and Wear

No time limits stated.

North Central London

Eligibility criteria—The individual is in the final stages of a terminal illness and is likely to die within the next 12 weeks. This should not, however, be applied restrictively and individual circumstances must always be considered. (Taken from revised criteria going out for consultation shortly)

Trent

Eligibility criteria—Require terminal care, which is the care oVered to individuals in the last few days or weeks of life. Because of its special nature it is categorised in a diVerent way as a separate level of eligibility criteria. Individuals who have a medical condition that is know to be life limiting, that is causing a physical deterioration on a daily or weekly basis, such that it is likely that they will die within the next month, require terminal care. Their condition is assessed as being in a progressive state of decline, is in the end stage of a terminal illness and is likely to die in the next few days or weeks. 3012251031 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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Dorset and Somerset Page 29—Continuing care for terminally ill people in a setting will be funded by the NHS where a person is in the final stages of a terminal illness and is likely to die in the near future.

Avon, Gloucestershire and Wiltshire Page 4—A person in the final stages of a terminal illness and is likely to die in the near future. Explanation: A person who qualifies under this condition will have been assessed by the doctor responsible for their care and will have been given a prognosis that they are likely to die within eight weeks.

APPENDIX 19

Memorandum by Mackintosh Duncan Solicitors (CC 32) We are a firm of solicitors specialising in the fields of health care, community care, incapacity and mental health law. We represent service users and their carers in enabling them to access the services to which they are entitled and require by virtue of illness, disability or any other reason. We were the instructing solicitors in the case of R v North and East Devon Health Authority, which resulted in the Court of Appeal judgment in July 1999. Since that time we have advised on numerous cases concerning NHS continuing care issues.

Summary We have seen and contributed to the submission from The Law Society and endorse the points made in that submission. It is our view that the recent announcement of Stephen Ladyman of a national framework for NHS funded continuing care will not resolve the current crisis. Any framework which is open to interpretation and based upon the Department’s current understanding of its legal responsibilities will lead to more confusion and injustice. Another framework will do nothing to address the core problems if its content is incorrect and misleading. If the Registered Nurse Care Contribution is retained, a national framework will do nothing to correct the perception that has been created that only those people whose needs exceed the high band are eligible for continuing NHS health care. The current position has been caused by the refusal of the Government to accept and implement the judgment of the Court of Appeal in the Coughlan case. Mr Ladyman’s announcement was accompanied by a comment that previous eligibility criteria applied by health authorities had been lawful. As confirmed by the study into criteria in 1999 undertaken by the Royal College of Nursing, when 90% of criteria analysed were said to be outwith the Coughlan judgment. It is our experience that criteria applied now (with the implementation of the RNCC tool—see below) are more draconian than prior to the judgment of the Court of Appeal and shift purchasing responsibilities unlawfully onto social services. The judgment of the Court of Appeal in the Coughlan case clearly establishes that where a person’s primary need is for health care, and that is why they are placed in nursing home accommodation, the NHS is responsible for the full cost of the package. Contrary to the picture painted by the Government, social services authorities may only purchase nursing services in strictly limited situations, in accordance with the judgment. Whilst much of the debatehas concentrated on nursing home placements, it must also be remembered that eligibility for NHS funded care is not relevant to the location in which that care is provided. Those people cared for in their own homes whose primary need is for health care may well be eligible for NHS funded care. The boundary between health and social care is a matter of law and not a policy issue. Until and unless Parliament provides otherwise, health services must be provided free at the point of delivery. However, the current system works to achieve the opposite—charging those who are most ill for the provision of services for which they have already paid. The introduction of the system of “free nursing” under the RNCC tool (which defines nursing care as being the exclusive remit of registered nurses) has been the most significant step taken by the Department in avoiding its legal responsibility for the provision of NHS funded continuing care. Practitioners and statutory bodies have accepted the RNCC tool as replacing continuing care, with only those whose needs are above the highest band of RNCC qualifying for NHS funded continuing care. The Department of Health has failed to take a lead in assisting health authorities, NHS Trusts and PCTs as to the correct legal approach they should take with regard to continuing care, despite being urged to do so by the Health Service Commissioner. The outcome has been confusion on the part of the statutory authorities, unnecessary expense in undertaking reviews of eligibility, and distressing/unsatisfactory outcomes for patients and their relatives. 3012251032 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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We have seen many sets of eligibility criteria currently being operated. In our view, none of those criteria are in accordance with the Coughlan judgment. In many cases, people would be eligible only if they were near death. and seen by our members are not in accordance with the Coughlan judgment. There continues to be a mistaken belief that chronic health care for patients in a stable condition is no longer the responsibility of the NHS. This was the very error which led to the Coughlan case being brought. We have severe concerns as to whether the proposed framework will do anything to remedy the existing problems in view of the history and the unwillingness of the Government to grapple with the problem and accept responsibility for past mistakes. We endorse the approach taken by the Law Society and consider that a national framework will only be of assistance if the following conditions are met: (a) the RNCC system is abolished; (b) the framework is one set of national eligibility criterion with a standard assessment method to be applied by all Strategic Health Authorities, PCTs and NHS Trusts in conjunction with local authority social services departments so that individuals whose primary need is a health need will receive fully funded care no matter where or in what setting they live; (c) the framework/criteria do not make any distinction between general or specialist nursing care, as both are nursing care arising from healthcare (as opposed to social care) needs; (d) the framework/criteria emphasise that funding decisions should not be determined by the predictability of a condition, the qualification of the professional undertaking the care or the nursing discipline concerned—the crux is the health of the patient and whether these are the primary need, as well as the “ancillary/incidental test” set out by the Court of Appeal; (e) the framework/criteria properly address the health needs of people with mental health conditions, including dementia and learning disabilities; and (f) that the Government takes proactive steps to ensure compliance.

Eligibility Criteria for NHS Funded Continuing Care One of the most important consequences of the Coughlan judgment was the quashing of the eligibility criteria for health services applied in North and East Devon (South and West Devon also had similar criteria). However few details were given by the Court in the judgment of the criticisms of the actual criteria under scrutiny in the case. The criteria: (a) diVerentiated between general nursing and specialist nursing care—which was found to be “elusive”, and “unhelpful” by the Court; (b) distinguished between nursing disciplines for the purposes of deeming eligibility—eg Stoma care or tissue viability nurses were deemed to be “specialist” (ie NHS funded) and district nurses, community psychiatric nurses were deemed to be “general” (ie social services funded). This was rejected by the Court of Appeal; and (c) distinguished between “specialist” and “general” nursing on the basis of a list of tasks—catheter care, wound care, bladder washouts, artificial feeding etc were said to be “general” nursing care and therefore social services’ funding responsibility within a nursing home. The underlying diVerence between “general” nursing and “specialist” nursing as a mechanism for determining funding responsibilities still remains, despite the criticisms of the Court of Appeal. This is a real barrier to understanding the correct legal responsibilities for the purchase of long term health care. Our experience of reviewing eligibility criteria currently being applied is that the criteria have become more sophisticated and complex, with care domains and scoring systems. They mask the actual consequence of their application, which is that the same incorrect assumptions about general and specialist care remain. In particular, the following factors are invariably quoted as being relevant (list not exhaustive): (a) predictability of care (the assumption is that predictable care is not usually health care); (b) regularity of need for nursing care (this is usually access to a “registered” nurse, and if only infrequently over a 24 hour period then the assumption is that the care tends towards social services’ purchasing responsibilities); (c) equating expectation of registration standards of a nursing home with purchasing responsibilities (eg where the criteria state that a “normal” nursing home will have certain standards of staYng and equipment, then this is usually deemed to be the social services norm for purchasing, with any additional staYng being the responsibility of the NHS); and (d) regularity of review by a consultant (the assumption is that infrequent review cases will be a social services responsibility). 3012251032 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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Pamela Coughlan Ms Coughlan’s condition and needs were said by the Court of Appeal to fall wholly within the funding responsibilities of the NHS. However, her particular needs are considerably less than the majority of residents in nursing homes. Therefore, applying the RNCC tool, Ms Coughlan would not meet the medium or high band of RNCC, let alone the (higher) threshold of fully funded NHS care. Given the comments of the Court of Appeal regarding her individual needs, we consider that this has been overlooked by health authorities in developing their criteria. Any national framework/criteria must operate so that if Ms Coughlan were to present herself in any area of the country, she would be eligible for fully funded NHS continuing care.

National Criteria The obligation of the Secretary of State is to provide a National Health Service under the NHS Act 1977 (as consolidated). Whilst this is a target duty, qualified by a range of factors, it should not allow for variations in the right of access to health services. Needs can be met in diVerent ways across the country, but this does not permit a diVerent right of access to health services. The Court of Appeal’s judgment in Coughlan confirmed that the boundary between health care under the NHS Act (the “Health Act”) and social care under the National Assistance Act 1948 (the “Social Act”) was a matter of law and legal definition. It decided that the Health Authority in the case had unlawfully transferred responsibility for health care services to local authority social services departments. The Health Authority had crossed the line. The consequence of this part of the judgment is that it is not a matter of agreement between a health authority and a local authority where the boundary between health and social care should lie. This is in fact a legal question, and social services are not permitted in law to purchase/provide health care services beyond the very limited circumstances set out in the judgment. Nevertheless, we know from local authorities that they have felt under great pressure from their health partners to agree to criteria which plainly involve the purchase by social services of high level health care services. The failure of the Department of Health to issue national criteria had led to 28 Strategic Health Authorities developing widely diVerent criteria dependent on geographical location and also the approach taken by diVerent local authorities. This is truly a “prescribing by post code” situation, but in relation not only to medication, but some of the most crucial of health services, namely those required by the chronically ill and vulnerable. True it is to say that 28 diVerent SHAs are better than the 100 previous Health Authorities, but this does not correct the problem. Moreover, diVerent NHS Trusts and PCTs have developed assessment tools for the application of the criteria. This has further complicated the situation as although superficially Health Authorities are applying the same criteria throughout all PCTs in their area, in practice diVerent assessment tools are being used which result in diVerent outcomes. In summary, therefore, the criteria assessment system is extremely complex, and not understood by practitioners, service users and carers alike. It is arbitrary, dependent on location, and a whole range of factors which are not aligned to the Coughlan test for continuing care. We are of the view that a national set of criteria is the only way in which the existing complexity and unnecessary suVering and cost can be avoided in future.

RNCC We support the comments made by The Law Society regarding the detrimental eVect of the introduction of the RNCC tool. The RNCC system created a further complex layer of administrative diYculties and misled the public and providers of services into assuming that it replaces the Coughlan judgment regarding NHS funded continuing care. The RNCC is the creation of the Department of Health, not Parliament and the three bands are arbitrary to the extent that the Department of Health had an almost entirely free hand in determining the eligibility criteria for each band of support. We support the view that those persons falling within the medium and high bands of the RNCC tool are properly the legal responsibility of the NHS, as opposed to social services. On any sensible analysis, the thresholds for the medium and high bands exceed the “ancillary and incidental” test set out by the Court of Appeal. In our view, the creation and development of the RNCC tool has proved to be the most significant reason why health bodies have failed to properly appreciate their full NHS continuing care responsibilities. It has replaced consideration of whether a person’s primary need is for health care with an assumption that the only nursing for which a person cannot be forced to pay (ie registered nursing) is health care. In our view this has distorted the true legal responsibilities of the NHS as provided by the Court of Appeal and led to widespread inequalities and injustice. 3012251032 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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Mental Health and Learning Disabilities We have been assisting many people with mental health diYculties and/or learning disabilities in relation to continuing care issues. Our experience is that it is most diYcult, if not impossible, to obtain fully funded NHS care for a person with mental health diYculties or learning disabilities unless they have the most extreme challenging behaviour, or their mental disabilities are accompanied by physical health needs. There seems to be an assumption that mental health nursing or learning disabilities nursing is “non medical” due to the fact that it involves high levels of supervision, as opposed to physical invasive treatments.

Impact on Local Authority Social Services Departments We are particularly concerned at the impact that the failures to fund continuing care has had upon local authorities’ social services departments’ abilities to continue to fund community care services. Obviously, if excessive (and unlawful) expenditure is taking place by social services in respect of health services, it means that it is more diYcult for them to fund basic community care services. This has a knock on eVect upon the most vulnerable sections of society, and means that certain client groups (eg older people) will be less supported in the community. Thus a Catch 22 situation is created which works against rehabilitation and support of people in the community. February 2005

APPENDIX 20

Memorandum of Evidence from Continuing Care Conference (CCC) (CC 33)

1. Introduction:About CCC 1.1 CCC welcomes the Committee’s Inquiry into NHS Continuing Care and is pleased to have the opportunity to submit written evidence to the Inquiry. 1.2 CCC is a broad-based, independent coalition of commercial, charitable and public service organisations that have a common interest in improving the care of older people in the UK based on an equitable and sustainable structure of funding. CCC has published research on the prevention of dependency in later life, and genetic tests and long-term care. 1.3 CCC has been acting as an advocate for managed change since it was established in 1992, as the Continuing Care Conference. There have been several welcome developments in policy but substantial gaps remain. As public expectations and patterns of demand continue to alter on the back of demographic changes and technological and medical advances, so CCC will continue to challenge the status quo and promote realisable alternative options.

2. Written Ministerial Statement,9December 2004 2.1 CCC broadly welcomes the Written Ministerial Statement by the Parliamentary Under-Secretary of State for Health (Dr Stephen Ladyman) of 9 December 2004. A national consistent approach to assessment for fully funded national health service continuing care is long overdue; its lack has been a source of great unfairness and exclusion for older people. 2.2 Whilst all the current criteria may be fair and legal, there is little or no evidence or structured reporting that they are being used in a systematic manner. 2.3 Most of the work by Strategic Health Authorities (SHAs) has been ensuring that Primary Care Trusts (PCTs) undertake reviews of disputed claims for eligibility to fully funded care.

3. How the Changes Will Build on the Work Already Undertaken by Strategic Health Authorities in Reviewing Criteria for NHS Continuing Care and Developing Policies 3.1 It is not evident to CCC members that Health Authorities proactively seek eligible cases. Their endeavours have been focussed on people who have claimed and initially been rejected. CCC does not believe it is presently routine for SHAs to question whether individuals are eligible for fully funded care. Therefore such assessments are largely a consequence of a specific request or of sporadic awareness. 3.2 One of CCC’s members reports, based on the evidence of many cases coming through the member’s advice service, that assessments for continuing care appear often to arise through a consultant’s ad hoc recommendation, rather than any systematic signposting and that, in some cases, the decision seems to be based on views about the older person’s ability to self-fund. 3012251033 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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3.3 CCC also has concerns about an apparent lack of audit trails and public reporting regarding eligibility considerations and decision making. 3.4 CCC continues to seek a national consistent approach to assessment as a means for improving the present confusion and unfairness. 3.5 CCC has expressed serious concern that developing new tools will further delay the remedy of present iniquities and uncertainties. It should now be possible to select an instrument that will provide reliable assessments. The extensive international experience should be added to the pathfinder work of health and social care bodies in the UK. CCC considers that the internationally-used Minimum Data Set (MDS) is fit for the purpose and well established; furthermore, it could facilitate the joining up of health and social care with and through the national programme for information technology. 3.6 It is wasteful, illogical and overly complex to maintain the separation of assessment for eligibility for fully funded NHS continuing care and the assessment processes undertaken by PCTs to determine levels of NHS continuing support in the form of the “Registered Nursing Care Contribution to Care” (RNCC). 3.7 Although we appreciate that the wider policy consideration does not come within the remit of the Committee’s present Inquiry, we would urge the Committee to consider the benefits of a single assessment, and the inevitable consequence of not pursuing such a policy—which is that people confronting care will continue to undergo several assessments to determine diVering entitlements. This could be remedied by a single assessment that determined varying levels of health support including fully funded care. Such an assessment should encompass the complexity and unpredictability of the health condition and not just its present intensity/ severity. This approach would also bring clarity to individual responsibilities for funding personal care, enabling people to plan for their future and make choices, whether that be through insurance mechanisms or supplemental payments from savings. 3.8 CCC draws specific attention to the lack of clarity in distinction between the higher band of dependency determination for RNCC payment and for fully funded NHS care. 3.9 Regulation and audit of care would be greatly enhanced through clear assessment processes with commissioners, regulators and policy makers being able to track trends and outcomes through the collation of data which would generate information about activity and outcomes.

4. Whether the Review of Past Funding Decisions has Succeeded in Addressing the Needs of Patients Wrongly Denied NHS Funding for Their Long Term Care 4.1 CCC is well aware of cases that had been denied funding and that have been reviewed as a consequence of the Health Service Ombudsman’s intervention and subsequent reviews. In addition, CCC is concerned about a fundamental injustice to, and consequent exclusion from funding of, people who were ineligible at the time of entry into care but who, through progressive disability, now meet the criteria. People needing care are typically assessed at a single point in time. If found to be eligible for fully funded care they are commonly reviewed to ensure continued eligibility. However, if a person is ineligible for fully funded care at the point of entry, planned reassessment is exceptional rather than planned-for. The majority of older people needing care do so as a consequence of disability arising from chronic progressive illness, and can be reasonably predicted to meet eligibility criteria at some point between initial assessment and death. To illustrate this point we describe two typical case scenarios: — An individual may have a devastating event, such as a stroke, that leads to an irredeemable dependency that justifies NHS funded long-term care. — An individual may have Alzheimer’s disease that does not meet eligibility criteria but requires continuous care for personal safety and well being. As this latter individual’s disease progresses and their condition gradually deteriorates they will cross the eligibility threshold unseen. 4.2 Reassessment at prescribed intervals must form part of a policy of assessment. CCC calls for assessment to be repeated in a structured manner to ensure that eligible people are able to receive services according to their changing needs. 4.3 The prevailing dependency of people in Care Homes in England would strongly support the notion that many people have been, and continue to be, excluded from this health service provision. CCC asks that the Committee consider this in the context of the NSF for older people as well as the basic promise of the NHS. As a further example, one of CCC’s members reports their anecdotal experience from a Care Home of 28 beds. On reviewing the service users, the proprietor encouraged three residents/former residents and their families to apply for retrospective review of their funding decisions (or lack of initial assessment). The review related only to residents at the home at 2 April 2001. Of the three: — One (deceased) has had a favourable decision made in her favour with repayment to family to follow. — One relative has not disclosed whether they will take up the suggestion that their father could be eligible—he was not keen to seek redress, largely because his father had died and he expressed the view that the “NHS is in enough trouble at present and could not aVord it!” 3012251033 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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— Another (mother still living) has had a decision turned down locally, the matter remains unresolved.

5. What Further Developments are Required to Support the Implementation of a National Framework 5.1 CCC encourages the Committee to support a statutory requirement for a standard assessment measurement. 5.2 CCC observes that assessment and commissioning of the health service component of care is vested in PCTs but that the regulation of care provision is the responsibility of the Commission for Social Care Inspection (CSCI) and that, to date, the Healthcare Commission has not been active in scrutinising assessment practices. This anomaly should be seen in the context of the burden of cases referred to the Health Service Ombudsman. CCC recommends that consideration be given to the proposal that eligibility practices and consequences are monitored, and required to be monitored, in a structured manner by one or other of the regulators or through a joint venture. 5.3 The development of a national approach will require a programme of training and support for staV carrying out the assessments to ensure competency and public confidence. February 2005

APPENDIX 21

Memorandum by The Law Society (CC 35) The Law Society is the professional body for solicitors in England and Wales. The Society regulates and represents the solicitors’ profession, and has a public interest role in working for reform of the law. We welcome the announcement of the inquiry into the long standing problems in relation to NHS funded continuing care and the opportunity for submitting this paper to the Select Committee.

Summary The Law Society is concerned that the recent announcement by Stephen Ladyman that a National Framework (“the Framework”) is to be developed, fails to address the fundamental problems in the NHS continuing care system. Specifically the Framework will not address the core problems in relation to NHS continuing care if its content is incorrect and not inline with the Coughlan judgment. Also, if the Registered Nurse Care Contribution (RNCC) assessment tool is retained, the Framework will do nothing to correct the perception that only people whose needs exceed the high band are eligible for NHS health care. According to the Coughlan judgment, the boundary between health and social care is not one of policy, but of law. Legally, there has been no material change in the scope of the NHS continuing health care responsibilities since inception and no amendment to the primary statutory obligation (albeit that the duty is now to be found in the consolidated 1977 NHS Act). However over the past decades, changes in the provision of long term chronic health care services following the development of community care has created confusion in relation to funding responsibilities and blurred the practical boundary between health and social care. The Law Society is concerned that health care has been redefined as social care without any primary legislation or debate, with the eVect being that the state may seek payment for chronic and long term health services. We also believe that successive Governments have actively contributed to this confusion by issuing incorrect circular guidance and failing to ensure that Health Authorities’ eligibility criteria and assessment methods comply with the judgment of the Court of Appeal in the Coughlan case. This has resulted in many vulnerable people and their families being forced to pay for health care which should be the responsibility of the NHS and free at the point of delivery. The judgment in Coughlan clearly establishes that where a person’s primary need is for health care, and that is why they are placed in nursing home accommodation, the NHS is responsible for the full cost of the package. Contrary to Government guidance, social services authorities may only purchase nursing care in strictly limited situations, in accordance with the judgment. Whilst much of the debate has concentrated on nursing home placements, it must be recognised that eligibility for NHS funded care is not relevant to the location in which that care is provided. Those people cared for in their own homes whose primary need is for health care may also be eligible for NHS funded care. 3012251034 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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The Law Society further believes that the creation and development of the RNCC tool has proved to be the most significant reason why health bodies have failed to properly appreciate their full NHS continuing care responsibilities. It has replaced consideration of whether a person’s primary need is for health care with an assumption that the only nursing for which a person cannot be forced to pay is registered nursing. We believe that this has distorted the true legal responsibilities of the NHS as set out by the Court of Appeal and led to widespread inequalities and injustice. The Law Society believes that the eligibility criteria currently being operated are incompatible with the Coughlan judgment. We are concerned that the criteria would result in people being eligible for NHS funded care only if they fall within the “palliative care” category and are aware of cases where people are being forced to pay for services which are clearly health services, such as kidney dialysis, artificial feeding, catheter care, wound care and bladder washouts. This is based on the mistaken belief that chronic health care for patients in a stable condition is no longer the responsibility of the NHS. The Law Society believes that a national framework will only be of assistance if the following conditions are met: — The RNCC system is abolished. — The Framework is one set of national eligibility criterion with a standard assessment method to be applied by all Strategic Health Authorities, PCTs and NHS Trusts in conjunction with local authority social services departments so that individuals whose primary need is a health need will receive fully funded care no matter where or in what setting they live. — The Framework should not make any distinction between general or specialist nursing care, as both are nursing care arising from healthcare as opposed to social care needs. — The Framework should clearly state that funding decisions should not place undue reliance upon the predictability of a condition but should be based on whether the primary need of the patient is healthcare, as well as the “ancillary/incidental” test set out in Coughlan. — The Framework must properly address the health needs of people with mental health conditions. — The Government should take proactive steps to ensure compliance.

Background History Until the programme of closure of long stay hospital wards and the development of care in the community, the division between health and social care responsibilities was relatively clear. Patients in a long stay hospital ward were the funding responsibility of the NHS. Primary care services in the community, such as nursing care, were not chargeable as they too were the responsibility of the NHS. Services provided by social services were means tested. The advent of community care in the 1970–90s crucially changed the location of the care provision for the chronically ill. NHS facilities were removed for patients with continuing care needs, so that increasingly the chronically ill were cared in non hospital settings.8 The implementation of the NHS and Community Care Act 1990 (NHSCCA) in April 1993 gave local authority social services departments the responsibility for being the “gatekeepers” of access to services (including nursing home care). Access to a residential care home or a nursing home in the community was via an assessment of need under s.47 NHSCCA, where the lead assessing body was the local authority. This led to a widely held misconception that as social services departments had become responsible for assessing need and arranging placements in nursing homes, the funding responsibilities for nursing home placements had correspondingly moved from the NHS to local authorities. This was, and remains, incorrect and is a major barrier to a proper understanding of the respective funding responsibilities of the NHS and local authority social services departments by practitioners in health and social care.

The Leeds Complaint The first major challenge to this originated as a Health Service Commissioner’s complaint concerning a patient who had been discharged from a neuro-surgical ward and whose wife had been forced to pay for his continuing care in a private nursing home.9 The Health Service Commissioner considered that even though the patient’s “condition had reached the stage where active treatment was no longer required . . . he was still in need of substantial nursing care, which could not be provided at home and which would continue to be needed for the rest of his life” and concluded that the exclusion by the health authority of responsibility in such cases was maladministration.10

8 Harding, Meredith and Wistow “note that between 1983 and 1993 there was a 30% (17,000) reduction in the number of long term geriatric and psychogeriatric NHS beds and the House of Commons Health Committee (2002) noted that between 1988 and 2001 there had been a loss of 50,600 such beds”. 9 Health Service Commissioner Second Report for Session 1993–94; Case No E62/93–94 (HMSO). 10 Sir William Reid (the then Commissioner) asserted “this patient was a highly dependent patient in hospital . . . and yet, when he no longer needed care in an acute ward but manifestly still needed what the National Health Service is there to provide, [the NHS bodies] regarded themselves as having no scope for continuing to discharge their responsibilities to him”. 3012251034 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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The Commissioner also took the exceptional step of having the report separately published11 and in response, the government undertook to issue guidance, indicating: If in the light of the guidance, some health authorities are found to have reduced their capacity to secure continuing care too far—as clearly happened in the case dealt with by the Health Service Commissioner— then they will have to take action to close the gap.12

The 1995 guidance—NHS Responsibilities for Meeting NHS Continuing Care Needs In 1994 the Department of Health consulted on the proposed guidance but this draft was the subject of intense criticism.13 The final 1995 guidance14 attempted to distinguish between “general” and “specialist” nursing and health care, a distinction which is of crucial importance in understanding the way in which it has been interpreted. However, the 2002–03 Health Service Commissioner’s Report revealed15 that the 1995 guidance was misapplied by many health authorities. The Report also indicates that the Department of Health took little positive action to require health authorities to redraft their continuing care eligibility criteria.16

The Coughlan Judgment The Coughlan17 case concerned a woman who had been left severely disabled following a road traYc accident several years previously. She required general nursing care and was living in a purpose built long stay hospital (in an individual flat). The dispute when the Health Authority decided to close the hospital, stating that as a result of a “change in the law” arising from the 1995 guidance the NHS was no longer responsible for chronic nursing care and was only responsible for specialist or acute healthcare for people with unpredictable needs. The Court of Appeal judgment confirmed that: (a) Where a person’s primary need was for health care (in a nursing home setting, which was the context in that case) the NHS was responsible for the full cost of the placement. (b) The distinction between “specialist” and “general” nursing or health care in the 1995 guidance was “elusive” and “idiosyncratic”. However, as mere guidance could not alter the statutory responsibilities of the NHS there was no need to quash the guidance as being unlawful, although it was “unhelpful”. (c) It had been incorrect to define a person’s eligibility for NHS funded care on the basis of the discipline of the nurse undertaking the task or the experience of the health care worker. The real issue was the condition of the person concerned. (d) The starting point is the NHS Act 1977 and only if the NHS is not responsible (ie the person’s need is not primarily for health care), may consideration be given to whether social services may be responsible for purchasing any nursing services under the National Assistance Act 1948. (e) Social services could only purchase nursing care in very limited circumstances (and pass the cost to the service user) for patients whose health care needs are: (i) merely incidental or ancillary to the provision of the accommodation which a local authority is under a duty to provide to the category of persons to whom section 21 refers; and (ii) of a nature which it can be expected that an authority whose primary responsibility is to provide social services can be expected to provide, then they can be provided under section 21. (f) Whether nursing was “merely incidental or ancillary” to the provision of the accommodation was a question of level and type of nursing care required—the “quality and quantity” test. (g) The Court considered that Ms Coughlan’s condition and that of the other two long stay residents fell wholly within the responsibility of the NHS (ie that despite the chronic and stable nature of their condition, social services were not permitted in law to purchase their care.)

11 Normally only an abbreviated selection of his reports is published twice yearly. 12 Virginia Bottomley, Secretary of State for Health, 4.11.94. 13 See for instance L. Clements (1994) “Shifting sands: the draft NHS continuing care guidance” in Community Care Journal 29.9.94 p 24–25. 14 LAC (95)5/HSG (95)8 “NHS Responsibilities for Meeting Continuing Health Care Needs”. 15 Second Report for Session 2002–03 NHS funding for long term care; Stationery OYce. HC 399. 16 (as she observes at para 21) “My enquiries so far have revealed one letter (in case E.814/00–01) sent out from a regional oYce of the Department of Health to health authorities following the 1999 guidance, which could justifiably have been read as a mandate to do the bare minimum”. 17 R v North and East Devon Health Authority ex p Coughlan [2000] 2 WLR 622: [2000] 3 All ER 850. 3012251034 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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The 1999 Guidance Following the Coughlan judgment, the Department of Health issued follow up guidance in HSC 1999/180; LAC (1999)30. This guidance stated that it was “interim guidance” and asked health and local authorities to “satisfy themselves that their continuing” care policies were in line with the judgment. It also gave a clear indication that further guidance would be issued “later this year” (at para 2) and many health authorities postponed any significant review of their plans until the promised guidance had been published. In the meantime, patients with similar and greater needs than Ms Coughlan continued to be charged for their health care services.18

The Response to the Royal Commission on Long Term Care The Government’s response to the 1999 Royal Commission report on long term care19 was long awaited but did not accord with the judgment of the Court of Appeal. Instead of the anticipated reversal of the previous position which had led to the Coughlan case and the development of standard national eligibility criteria to ensure equality of access to health services, the Government accepted the minority view of the Commission, which recommended that only certain nursing care should be funded by the National Health Service and that “general” nursing and personal care would be chargeable.

S49 Health and Social Care Act 2001, the 2001 Guidance and “Free Nursing Care For All” In July 2000, the Government produced its new National Health Service Plan and confirmed that “nursing care in nursing homes will be fully funded by the NHS”. Work started on the new Health and Social Care Bill to enable pooling of budgets, partnership working and changes to funding for nursing care in nursing homes. S49 Health and Social Care Act 2001 defines the nursing care which cannot be purchased by local authority social services departments.20 The eVect of s49 was to prohibit the purchase of high level “registered nursing care” by social services authorities but it went no further. The Law Society believes that the implementation of s49 together with the introduction of the Registered Nursing Care Contribution (RNCC) assessment tool regarding “free nursing care” are not compatible with the Coughlan judgment. On 1 October 2001 the Government announced “Free Nursing Care for All” stating: “From today people currently living in nursing homes and paying for their own registered nursing care will received free NHS funded nursing care . . . The nursing care provided will be divided into three bands—£35, £70 and £110 per week. Based on current information it is anticipated that only 10% of people will fall into the £35 band and the remainder will be divided equally between the two higher bands. If following the assessment people have needs above the highest band, they will receive the care they need.”21 As noted above, the Government felt unable to accept the full recommendations of the 1999 Royal Commission on long term care report and opted instead to fund only the registered nursing care costs of residents in nursing homes.22 In England, Primary Care Trusts were charged with responsibility for deciding the extent of this obligation, and the Department of Health issued guidance23 to explain how this should be achieved. The guidance set out three bands of nursing care, while in contrast the Welsh Assembly opted for a much simpler approach stating that that every resident would receive the same contribution from the health authority, originally £100 per week. The guidance set out the Registered Nursing Care Contribution (RNCC) assessment tool and three bands for free nursing care24 (high, medium and low). The Law Society is concerned that the creation of the RNCC and the eligibility criteria were not subject to Parliamentary scrutiny.

18 A report by the Royal College of Nursing in 1999 (“Rationing by Stealth”) asserted that the continuing care policies of over 90% of health authorities were as deficient as those of the health authority in the Coughlan case. 19 With respect to old age: The Royal Commission on Long-Term Care Cm 4192, London: The Stationery OYce. 20 S49 “Exclusion of nursing care from community care services” sets out the following: (1) Nothing in the enactments relating to the provision of community care services shall authorise or require a local authority, in or in connection with the provision of any services, to— (a) provide for any person, or (b) arrange for any person to be provided with, nursing care by a registered nurse. (2) In this section “nursing care by a registered nurse” means any services provided by a registered nurse and involving— (a) the provision of care, or (b) the planning, supervision or delegation of the provision of care, other than any services which, having regard to their nature and the circumstances in which they are provided, do not need to be provided by a registered nurse.

21 DoH Press release reference 2001/0455. 22 Announced in The NHS Plan at paragraph 15.181 (Department of Health, July 2000.) and enacted as s49 Health and Social Care Act, 2001. 23 HSC 2001/17: LAC (2001)26. 24 These are detailed in “NHS Funded Nursing Care Practice Guide & Workbook” Department of Health, August 2001 see www.doh.gov.uk/jointunit/freenursingcare. 3012251035 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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We believe that the high level of support (ie the “high” band) has been set well above the level defined by the Court of Appeal and this has caused considerable confusion amongst health authorities and trusts. Para 3.8 of the guidance describes the “high band” as follows:

3.8 People with high needs for registered nursing care will have complex needs that require frequent mechanical, technical and/or therapeutic interventions. They will need frequent intervention and re-assessment by a registered nurse throughout a 24 hour period, and their physical/mental health state will be unstable and/or unpredictable.

We are concerned that this “high band” only triggers a PCT contribution liability of £110 per week (when introduced). This will have a knock on eVect for people who are placed in either the medium or low bands who despite having relatively high level health needs will not be provided with suYcient contributions to fund their health care.

It should be noted that neither the patient who was the subject of the Leeds NHS Ombudsman complaint nor Ms Coughlan meet these criteria. Indeed the Nurses Work Book which nurses use in determining the band a person should be placed, gives an example of a person who should be entitled to the high band, which bears great similarity to the condition of a nursing home resident considered in the Health Service Commissioner’s report of February 2003 who, as a result of several strokes, had no speech or comprehension; was unable to swallow and required feeding by PEG tube.25 The authority had rejected her claim for continuing care funding and the Ombudsman found.

“It is clear from the information I have seen about Mrs N’s condition that she was extremely dependent and required a high level of physical care: like Miss Coughlan, she was almost completely immobile; and she was doubly incontinent. I have seen no evidence that she had breathing diYculties as Miss Coughlan had; but she required PEG feeding, which Miss Coughlan did not. She was unable to communicate verbally. I cannot see that any authority could reasonably conclude that her need for nursing care was merely incidental or ancillary to the provision of accommodation or of a nature one could expect Social Services to provide (paragraph 15). It seems clear to me that she, like Miss Coughlan, needed services of a wholly diVerent kind. If the Health Authority had had a reasonable policy, and applied it appropriately, they would have provided NHS care for Mrs N. They failed to provide a service which it was their function to provide. I uphold the complaint.”

The Law Society believes that patients in the high band of registered nursing care cannot lawfully have their care purchased by the local authority. The primary need of such patients is for health care, and according to the Coughlan judgment, the NHS is legally responsible for funding such a care package.

In addition, it is likely that most (if not all) patients assessed as falling within the “medium band” will also be entitled to continuing care. Para 3.9 describes the medium band in the following terms:

3.9 People whose needs for registered nursing care are judged to be in the medium banding may have multiple care needs. They will require the intervention of a registered nurse on at least a daily basis, and may need access to a nurse at any time. However, their condition (including physical, behavioural and psychosocial needs) is stable and predictable, and likely to remain so if treatment and care regimes continue.

It is again of some concern that both Ms Coughlan and the patient who was the subject of the Leeds NHS Ombudsman complaint would have diYculty qualifying for this band.

The Law Society was disappointed that the 2001 continuing care guidance was issued without proper consultation in line with Cabinet OYce guidelines. We also disagree with its conclusion that the Coughlan judgment merely confirmed the status quo and that little action was required following the judgment. The guidance has been roundly criticised by the Health Service Commissioner, who argued (at Para 38) that its defects have caused “injustice and hardship” to those (almost certainly numbering several thousand) who have been compelled to pay for nursing care; nursing care that should have been provided free by the NHS.

We also believe that the creation and development of the RNCC tool has proved to be the most significant reason why health bodies have failed to properly appreciate their full NHS continuing care responsibilities. It has replaced consideration of whether a person’s primary need is for health care with an assumption that the only nursing for which a person cannot be forced to pay is registered nursing. The Law Society believes that this misrepresents the legal responsibilities of the NHS as provided by the Court of Appeal.

25 Wigan and Bolton Health Authority and Bolton Hospitals NHS Trust Case No E.420/00–01. 3012251035 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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The Health Service Commissioner In February 2003, the Health Service Commissioner published a Special Report “NHS Funding for the Long Term Care of Elderly and Disabled People—HC399” as a result of serious concerns that Strategic Health Authorities were continuing to devise and apply eligibility criteria which were too restrictive. Importantly, the Report recommended that the Department of Health should take concerted action to minimise variations in eligibility criteria and produce national guidance: “The Department of Health should review the national guidance on eligibility for continuing NHS health care, making it much clearer in new guidance the situations when the NHS must provide funding and those where it is left to the discretion of NHS bodies locally. This guidance may need to include detailed definitions of terms used and case examples of patterns of need likely to mean NHS funding should be provided.” The Ombudsman’s recommendation states that the Department should “support and monitor the performance of authorities and primary care trusts in this work . . . (including) . . . assessing whether, from 1996 to date, criteria being used were in line with the law and guidance. Where they were not, the Department . . . need to co-ordinate eVort to remedy any financial injustice to patients aVected.” Further the Ombudsman recommended that the Department “be more proactive in checking that criteria used in the future follow the guidance.” Following publication of this Report, the Department of Health asked Strategic Health Authorities (SHAs) to identify those people who may have been wrongly denied funding and to conduct reassessments, which were to have been completed by the end of December 2003. Most complaints received by the Commissioner were referred back to the SHAs for reassessment according to this process. According to the Commissioner’s annual report for 2003–04, the volume of applications for reassessment was far greater than anticipated and the Department of Health extended the deadline for dealing with them to March 2004. However, by that time only 57% of the retrospective reviews had been undertaken (6,713 out of 11,724), which the Commissioner described as “disappointing” given the large numbers of people aVected. The Commissioner also criticised the lack of support given by the Department of Health to SHAs and Primary Care Trusts (PCTs) in undertaking the reviews. The Department estimated that £180 million would be the cost of recompense to 31 March 2004 and the Health Minister Stephen Ladyman confirmed in the House of Commons that 770 cases had resulted in compensation being payable.26 On 27 February 2004, the Continuing Care (National Health Service Responsibilities) Directions 2004 came into force, applying to all SHAs and PCTs in England. They include a definition of continuing care as: “care provided over an extended period of time to a person aged 18 or over to meet physical or mental health needs which have arisen as a result of disability, illness or accident” The Directions provide that by 30 April 2004 each SHA must have developed a single set of eligibility criteria to be applied by all PCTs within the area. Before establishing or revising the criteria the SHA must take such steps as are reasonable to obtain the agreement of the PCTs and all local authorities in the relevant area. These Directions, along with the Delayed Discharge Directions, place a qualified obligation on the PCT to undertake an assessment of the person’s eligibility for NHS funded continuing care “where it appears there may be a need for such services” prior to the issue of an assessment notice regarding delayed discharge. Further publicity was generated by the Ombudsman’s report into the Pointon27 case, which concerned the refusal of a PCT to provide continuing care funding in a patient’s own home as opposed to a nursing home or hospital. This case involved a man with Alzheimer’s Disease who required continuing care and considered the application of the criteria by way of an assessment tool which focused on physical care rather than the person’s psychological condition. A recommendation was made that “SHAs should review their eligibility criteria to ensure that the criteria for funding at home, and the recognition of patients’ psychological as well as physical needs, are clearly defined.” The Law Society is concerned by the diVerent approach to NHS funded continuing care regarding mental, as opposed to physical health care, and that little action appears to have been taken to implement the recommendation made in Pointon. We believe that people suVering from mental distress, particularly with dementia which may be controlled within a nursing home environment or in their own home, are discriminated against as far as eligibility for continuing care is concerned. It is more diYcult for such persons to establish that their primary need is for health, as opposed to social care, than residents whose treatments involve physical health care interventions.

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The most recent report of the Health Service Commissioner28 was published shortly after the announcement from Stephen Ladyman in December 2004 and again describes a continuing picture of chaos, complex procedures, delays, and injustice among those seeking to establish their eligibility for continuing care.

The Announcement of the National Framework for NHS Funded Continuing Care The Law Society is concerned that the recent announcement by Stephen Ladyman in December 2004 that a national framework is to be developed, does not address the fundamental issues. The fundamental problem is that the Government has not implemented the judgment in the Coughlan case. We are particularly concerned that the conditions described in the RNCC bands bear no resemblance to the thresholds for entitlement to NHS funded continuing care as laid down by the Court of Appeal. Unless the legal position is properly understood and consistently applied, the problems will continue and any framework which is based on anything less than the Coughlan judgment, will create further inequality. The Law Society believes that if the RNCC system of “free nursing care” is retained, a national framework will do nothing to correct the perception created by the RNCC system that only those people whose needs exceed the high band are eligible for NHS fully funded care. We believe that people in the high and medium band are legally eligible for NHS funded continuing care. It must be remembered that admissions to nursing homes are governed by strict criteria applied by local authority social services departments following an assessment of need. Only those patients who cannot be cared for elsewhere are admitted to nursing homes (unless the social services department is not involved, which is unusual). The establishment of a framework will not resolve the issue of inconsistencies between SHAs while diVerent eligibility criteria for diVerent SHA areas are permitted. The NHS is a national service and therefore a person with a particular condition should be able to approach any SHA in the country and have the same right to health services. Allowing diVerent areas to develop their own criteria leads to inequality on a postcode basis and allowing diVerent PCTs and NHS Trusts to develop their own “assessment tools” will continue the diVerential treatment of people in diVerent areas of the country. February 2005

APPENDIX 22

Memorandum by Ms Marion Shoard (CC 36) This evidence is submitted by Marion Shoard. I have experience of the Continuing Care system through my mother, who lived in a Continuing Care establishment in east Kent for four-and-three-quarters years until her death in January 2005. My knowledge of the Continuing Care system also arises from the research I carried out for my 640-page book published in 2004 A Survival Guide to Later Life (Constable and Robinson). I welcome the statement by the Minister announcing that a national framework setting out criteria for assessing eligibility for Continuing Care will be drawn up. I am particularly concerned about the eligibility criteria as far as people with dementia are concerned, and firmly believe that they should be consistent across England but also reflect the prime purpose of Continuing Care provision—to support people with very great heath care needs.

Eligibility Criteria In 2004 my mother’s health trust, Canterbury and Coastal Primary Care Trust, announced that it was going to reassess her for her Continuing Care. I assumed that the criteria that it would use would reflect the Department of Health’s guidance on the purpose of Continuing Care, in other words, Annex C of circular HSC 2001/015: LAC (2001) 17, Continuing Care: NHS and Local Councils’ Responsibilities, which sets out the “key issues to consider when establishing continuing NHS health care eligibility criteria”. However, I found that the PCT and its overseeing Strategic Health Authority had developed sets of Continuing Care criteria which diVer markedly from the purpose of Continuing Care as set out in HSC 2001/015: LAC (2001) 17, Annex C. Apart from people who are in the final stages of a terminal illness or likely to die in the near future, Annex C says that Continuing Care should be provided because “The nature or complexity or intensity or unpredictability of the individual’s health care needs (and any combination of these needs) requires regular supervision by a member of the NHS multidisciplinary team, such as the consultant, palliative care, therapy or other NHS member of the team”. However, both my late mother’s Strategic Health Authority (Kent and Medway) and her primary care trust (Canterbury and Coastal) put a great deal of emphasis on those whose symptoms happen to involve disruptive, aggressive or non-compliant behaviour. Thus in its “Mental Health

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Criteria”, the Kent and Medway Strategic Health Authority states that a person must meet at least one criterion in each of three categories, A, B and C. Three of the five criteria in A relate to disruptive, aggressive or non-compliant behaviour, as do two of the three under B and two of the four in C. For example, category B says that the person must either pose “A serious risk to themselves or others, or serious self-neglect, as a consequence of severe and enduring mental illness or personality disorder”, or exhibit “challenging behaviour, defined as behaviour of such intensity, frequency or duration that the physical safety of the person is likely to be placed in jeopardy, or behaviour which is likely to seriously limit or deny access to and use of ordinary facilities”, or to have “serious physical frailty”. Yet patients who lash out, or are disruptive, unpleasant, aggressive or utter profanities will not necessarily be those with the greatest health care needs. They may well be those whom health and social services authorities find most diYcult to place in private care homes, but that is a very diVerent matter from the objectives for Continuing Care as set out in Annex C of circular HSC 2001/015: LAC (2001) 17. This emphasis on people who are diYcult to handle rather than simply seriously ill is carried through in the eligibility framework drawn up by the Canterbury and Coastal Primary Care Trust. In a diagram headed “Areas of Need/Degree of Severity/Intensity/Stability”, the oYcials assessing people for eligibility for Continuing Care are invited to tick a box in one of a number of categories. Several of these categories are restricted to aggressive, disruptive, unpleasant or challenging behaviour—“challenging behaviour/activity” and “evidenced aggression” and “risk to self or others”—so that those who do not exhibit such symptoms would score nil in these areas. But the emphasis on disruptive people also bears fruit in the sub-divisions within several of the other categories. Thus in the category “personal care”, the spectrum of choices oVered, in five divisions, does not span the intensity or extent of a person’s personal care needs arising from illness or disability: rather it spans the extent to which the patient when receiving help, whether it is a little or a great deal, is resistant or compliant. The same obtains for another category, “feeding”: what is measured is not the degree of assistance needed but whether the patient accepts help or objects to receiving help. My mother was not at all disruptive, aggressive or non-compliant, but had massive health care needs arising from Alzheimer’s disease. Had she lived, she may well have lost her bed in favour of a person who was less poorly but disruptive. Had my mother managed to hang on to her bed, she would have faced another hurdle which also finds no place in HSC 2001/015: LAC (2001) 17—reassessment every three months. Three-monthly reassessment may perhaps be appropriate for patients who are recovering from some physical illness or trauma. Dementia does not fall into this category. A person with dementia is assessed as needing Continuing Care on account of the nature, complexity, intensity or unpredictability of their mental health needs is likely to be very poorly indeed. They are not going to recover. The diVerences in suVering from dementia arise from diVerences between patients, not substantial changes over time in the impact of the condition on the individual. My own mother, for example, was in a state of more or less continuous anxiety and distress for six years; I did not witness any diminution in her health care needs at all. But the Continuing Care facility where she lived for the last four-and-three-quarters years of her life became her “home”: even if she could not name the institution or the people who looked after her, in some sense she became familiar with that physical space and the particular human voices, routines of care and method of caring she experienced there. Had her Continuing Care been withdrawn after reassessment, she would have lost her “home”. Or, perhaps she might have been granted Continuing Care for three months, then been refused it and moved out of her facility, then at some later stage moved back in again. It is hard to think of any state of aVairs more likely to increase the suVering of the people involved and of their families than the uncertainty aVorded by three-monthly reassessments. It is widely accepted that moving any person with dementia often makes their condition worse. There is also substantial research evidence to show that relocating any institutionalized elderly people to a new residence can have a dramatic eVect on their mental health and life expectancy. The policy thus seems to me cruel in the extreme but also unrealistic because it is bound to become swamped in lengthy and expensive appeals. I do not disagree that people receiving Continuing Care should undergo reassessment, but the period between reassessments needs to be carefully thought out in relation to the type of patient involved. I urge the committee to recommend that the government’s new national framework on Continuing Care should make it absolutely clear that the purposes of Continuing Care are those set out in circular HSC 2001/ 015: LAC (2001) 17. I do not believe that Kent and Medway is an isolated case. Thus the eligibility criteria of Bedfordshire and Hertfordshire Strategic Health Authority, for example, include provision for three- monthly reassessments and devote one of their three categories of candidates for Continuing Care to people exhibiting “Highly Challenging Behaviour”. I also urge the committee to consider aspects of Continuing Care other than eligibility in putting forward their recommendations to government. These are as follows:

Choice I believe that if a person is granted Continuing Care and that care is to be received in an institution—a Continuing Care facility run by a health trust or a care home with which the trust has a contract—then the person to receive care, or their representative if they lack mental capacity, should be consulted about where the person is to be placed. When my mother was first awarded Continuing Care in 2000, I was simply 3012251036 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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informed of the name and address of the facility where that care would be delivered: I was not given any information about the range of possible venues, still less any choice over which of these would be my mother’s future home. This denial of choice flies in the face of the government’s current focus on the provision of choice in health care. I cannot see why a person granted Continuing Care cannot be oVered choice of location in the same way that, if a person is to go into a care home and social services is to pay the fees because the person’s own financial resources fall below the £20,000 threshold, then it must allow the person involved a choice of home, as set out in the Direction of Choice circular (Department of Health (1992), The National Assistance Act (Choice of Accommodation) Directions, Local Authority Circular (2) 27). This denial of choice in the location where Continuing Care will be taken also reflects a failure to acknowledge that the places where people receive Continuing Care become their homes. Many elderly people receiving Continuing Care have dementia and, if such people receive suYcient food and liquid and an equable temperature, they can live for many years, as did many of the residents of my mother’s Continuing Care facility. However, NHS Continuing Care units (unless they fall within a nursing care home) are treated as “health” rather than “social” care and as a result often lack the attention paid in good care homes to the provision of activities such as gardening, crafts, dance, games and short outings which can make the lives of residents more interesting and rewarding: in their absence, every day is an almost exact replica of the day before. Attention to such matters would also make Continuing Care establishments more interesting and attractive for visitors. Encouraging visiting by family and friends is particularly important in the field of dementia. People with dementia benefit greatly from one-to-one reassurance. Even in Continuing Care establishments, staV are unlikely to have suYcient time to engage in this contact for as long as is desirable; relatives and friends may have much more time at their disposal. Furthermore, they can provide a vital link with the past for a person with dementia and in this way help to reduce or at least mitigate the disorientation caused by progressive loss of memory, language and cognitive powers. NHS Continuing Care units have been told in a letter from the Department of Health that they should take note of the national minimum standards for care homes and themselves review their services to ensure that they meet them. In a letter concerning the Care Standards Act 2000: National Minimum Standards— Care Homes for Older People, CI (2001) 4, March 2001, the Chief Inspector, Social Services Inspectorate of the Department of Health stated: “Local authorities and independent providers of care homes and any NHS trusts which provide residential care homes should take note of these standards and review their services so that they are prepared to meet these standards when they are implemented”. The committee may care to consider whether this instruction should be included in new national guidance on Continuing Care, whether it forms part of a new national framework or comes in some other form. They may care to bear in mind that NHS Continuing Care units do not receive inspections or even visits from the Commission for Social Care and Inspection in the way that care homes do. Such visits to Continuing Care facilities as may be made by the Commission for Health Improvement as part of its rolling programme of inspecting health trusts involve a diVerent approach from the inspection of care homes. CHI oYcials are unlikely to pay much attention to the extent to which such facilities provide acceptable “home” environments, unlike the announced and unannounced CSCI inspections of care homes in which inspectors examine not only the physical care of residents, but also their emotional care and whether they are given the opportunity to lead interesting lives. Furthermore, the CSCI can require instant change if it is concerned about what it discovers. The CHI has no similar powers of enforcement. Some people receive Continuing Care in their own or a relative’s home. They are also denied choice in a diVerent area. While people receiving community care services through social services have the option of managing their services themselves under the Direct Payments System, (and indeed social services departments are now legally required to oVer the Direct Payments option), people receiving Continuing Care at home are told by health authorities that it is not possible to receive that care through Direct Payments. The Direct Payments system allows the user choice over who provides a service, the nature of that service and how and when it is provided; I believe that people with Continuing Care (or their representatives if they lack mental capacity) should have this choice just like those whose needs are less intense. This state of aVairs has significant repercussions. People who receive Continuing Care at home often have a fitter person, such as a partner, living with them who acts as their de facto carer as they are on hand for 24 hours a day, including the many, often extended periods, such as night-time, when care workers and district nurses are absent. Yet in one case I know well this de facto carer is not classed as a “carer” as he would be if the cared-for person (his wife) received community care services administered by social services. As a result, he is not entitled to carers’ financial benefits like Carer’s Allowance and the Carer Premium. De facto carers like this elderly man may well not receive a carer’s assessment as they would were community care services involved. Finally, and perhaps most importantly, the pretence that visiting care workers and nurses can provide all the care that is needed to deliver Continuing Care at home means that these de facto carers are likely to receive little, if any, training. They deserve proper training, both in the care of the cared- for person and in the steps they can take to ensure that caring does not jeopardise their own health. A fortnight’s training would seem to me to be a minimum. February 2005 3012251037 Page Type [O] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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APPENDIX 23

Memorandum by the Royal College of Physicians (CC 37) The Royal College of Physicians is grateful for the opportunity to submit evidence for the above Inquiry. On this occasion we do not wish to submit any evidence of our own. However, we have seen the evidence submitted to the Committee by the British Geriatrics Society and are writing to endorse their comments, particularly their recommendations. February 2005

APPENDIX 24

Memorandum by the Commission for Social Care Inspection (CSCI) (CC 38)

1. The Commission for Social Care Inspection (CSCI) 1.1 The Commission for Social Care Inspection [CSCI] was set up in April 2004. Its main purpose is to provide a clear, independent assessment of the state of social care services in England. CSCI brings together into one body the social care components of the work of the National Care Standards Commission, the Social Services Inspectorate [SSI] and the SSI/Audit Commission Joint Review Team. As such, CSCI combines inspection, review, performance and regulatory functions across the range of social care services in the public and independent sectors. 1.2 CSCI exists both to promote improvement in the quality of social care and to ensure public money is being well spent. It works alongside councils and service providers, supporting and informing eVorts to deliver better outcomes for people who need and rely on services to enhance their lives. CSCI aims to acknowledge good practice but will also use its intervention powers where it finds unacceptable standards.

2. The Written Ministerial Statement on NHS Continuing Care Issued by Dr Stephen Ladyman on 9December 2004 2.1 The Commission for Social Care Inspection (CSCI) believes that a national eligibility framework for the receipt of continuing care consistently applied, is essential. 2.2 However, having a national framework is not, in itself, a guarantee that people will experience greater consistency in the way their individual circumstances are dealt with. 2.3 A national framework may not result in criteria being consistently applied, since health and social care systems need to take account of local circumstances. We aware thst in some palces even where councils and their NHS partners have entered into a formal partnership agreement under S.31 Health Act 1999, they are sometimes unable to resolve funding disputes. 2.4 Evidence collected by the Social Services Inspectorate (SSI) whose functions CSCI inherited in 2004 indicates that, despite the 1999 Coughlan judgment, there is need for better understanding of the arrangements for continuing care between health and social services. 2.5 The lack of a co-ordinated approach impacts adversely on outcomes for service users, especially in regards for people leaving hospital with significant health problems. 2.6 In CSCI’s “Leaving Hospital—the price of delays” report over a third of the case sample could not recall the details of any information given to them while in hospital. These diYculties are compounded for patients developing dementia or who have particular language and cultural needs.

3. How the Changes will Build on the Work Already Undertaken by Strategic Health Authorities in Reviewing Criteria for NHS Continuing Care and Developing Policies 3.1 As an NHS area of activity, CSCI does not have a specific remit to assess performance in relation to continuing care. However, information about how disputes over eligibility criteria and provision of inappropriate services aVect people who use services can be brought to our attention through our service inspection and performance assessment functions and through special studies. We also monitor development of local health and social care partnership arrangements. 3.2 The duty of partnership between CSCI and the Healthcare Commission set out in the Health and Social Care (Community Health and Standards) Act 2003 gives us the opportunity to assess the impact on individuals who move through social care and health systems. It will enable us to get a better overall picture, therefore, of how far local partnerships are appropriately taking account of local needs to promote the well being of local people. 3012251038 Page Type [E] 27-04-05 23:21:51 Pag Table: COENEW PPSysB Unit: PAG1

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3.3 We expect that, by looking across systems rather than focusing just on organisational performance, our joint inspection activity with the Healthcare Commission and Audit Commission on Older People’s services will ensure issues in relation to continuing care will be able to be identified more easily. 3.4 CSCI also regulates some NHS continuing care services—eg care homes with nursing and domiciliary care services and so is uniquely placed to pick up information about how this is working.

4. What Further Developments are Required to Support the Implementation of a National Framework 4.1 CSCI believes that drawing upon people’s experience is key to understanding how well complex systems are working to address their needs. This is particularly important for people who use both health and social care services as they are often in circumstances which makes it diYcult to ensure their interests are represented. People with social care needs may experience multiple forms of disadvantage and face barriers to inclusion—including access to health and social care services. To promote good health and well being for people who use social care, therefore, requires a broad perspective to understand their experience in the context of the whole system. 4.2 There are a number of challenges and dilemmas to be faced to ensure that the perspective of people using health and social care services is adequately represented in assessments and that information about these are fully accessible to the wider public. 4.3 Concerns about continuing care are not solely in relation to application of eligibility criteria. In our Leaving Hospital study issues emerged about quality and consistency of assessment—particularly multi- disciplinary assessment—appropriateness of provision and supply to meet changing needs. For example, in one of the sites, 15% (3/10) of the people in our case sample were discharged from hospital into continuing care. All three were from black and minority ethnic groups; one was assessed as requiring EMI care. It is important that social care and health systems plan appropriately and commission services to meet changing demographic needs. 4.4 In some councils around a third of people requiring social services support on discharge are making life changing decisions from their hospital bed about where they were going to live in future. 4.5 It is important to note that continuing care in not just about institutional care and that a range of services like domiciliary care services should be available to these people. Care and support needs to be holistic and in line with users’ preferences. “I remember being told they had done all they could for me and it was best for me to go in a nursing home. They said it was for me to decide but with the drugs I was on I was in no fit state to do so.” — A patient discharged to a nursing home, who, prior to hospital admission, lived in sheltered accommodation. “They tried to talk me into a home but I was having none of it.” — The view of one older person. 4.6 It is also important that the health needs of the 30% of people who are self-funders are met and that if these needs change people are not shunted between health and social care services. 4.7 Attention needs to encompass carers and supporters who themselves may present challenges to services eg carers who have a learning disability. 4.8 Pressures to free up acute beds should not, in turn, pressurise older people into making long-term decisions about where they live. People are at their most vulnerable in hospital, information to guide decision making is not easily absorbed, and the potential for improvement can change markedly. Mentally confused people and people with complex needs were found to be most at risk. 4.9 Evidence from CSCI’s Leaving Hospital report into delayed discharges indicates that joint working between health and social care can be achieved and that the divisiveness that some feared does not seem to have materialised. Managers across successful services talked in terms of “our problem” as opposed to “your problem”. February 2005

ISBN 0-215-02460-5

Printed in the United Kingdom by The Stationery OYce Limited 9 780215 024602 5/2005 301225 19585