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Policy Update July/ August 08 For Carers Leads England

National government

The new National Carers Strategy We circulated a full briefing of the National Strategy to this group. This can be found at: www.carers.org/professionals/adult-carers/articles/national-carers-strategy-2008,3531,PR.html. Ministers Ivan Lewis and Anne McGuire have stressed the importance of carers’ services in implementing the strategy. Their evidence to the Select Committee can be seen in the Appendix below. The various funding commitments in the strategy will be released by April 2009 with PCT allocations for carers breaks released shortly. There has been a great deal of disappointment about the lack of immediate help for carers living on Carers Allowance, with some carers’ websites calling for a march on Downing Street.

Putting People First and the review of FACS and adult care and support See www.careandsupport.direct.gov.uk to join in the debate on the future of adult care and support. Regional events are taking place in the autumn. The consultation will close in November and the Green Paper itself will be out early 2009. At a recent DH event David Behan, Director General for Social Care, made a plea for local research/ evaluation of social care services and interventions, no matter how small, to inform the debate on what works. We are always keen to see and pass on local evaluations of carer interventions!

The Trust held a roundtable discussion on Putting People First without putting carers second. Ivan Lewis and key figures from the DH and sector were present. Our report of that name, produced jointly with Crossroads Caring for Carers, is now being developed alongside a commissioners’ perspective on Putting People First and carers and is in partnership with ADASS, LGA, I&DeA and NHS Confed. In the autumn we will be presenting on this to the DH’s personalisation team, led by John Bolton.

Alex Fox, The Trust’s Director of Policy and Communications, recently spoke at leading think tank ippr’s round table on personal budgets with the Secretary of State for Work and Pensions, James Purnell. The presentation on taking a whole family approach to personal budgets can be found at www.ippr.org/events/index.asp?id=3203

The Trust is represented on the DH stakeholder group for the Fair Access to Care review. We met the Head of Social Care Policy at DH with Crossroads Caring for Carers in order to discuss its impacts on carers. We would welcome your views.

National Dementia Strategy review The three themes of this review are: raising awareness; early diagnosis and intervention; and improving the quality of care. The draft Strategy is relatively strong on carer involvement and support although it needs better integration with the Carers Strategy’s goals. This can be found on the website until 11 September 2008 at www.dh.gov.uk/en/Consultations/Liveconsultations/DH_085570 or alternatively email [email protected].

All-Party Parliamentary Group on Social Care - report from workforce inquiry. The Trust gave evidence to this inquiry on the need to recognise carers as a hidden, under-supported work force, vital to delivering personalised social care. For more information, see www.scie.org.uk/networks/files/appg/workforce.pdf

NHS Continuing Care Increasing numbers of people with complex long-term health conditions, who have previously received adult

Alex Fox Director of Policy and Communications [email protected] Page 1 / 11/05/2018 www.carers.org Policy Update July/ August 08 For Carers Leads England

social care, now receive free NHS Continuing Care. This is partly due to the implementation of the National Framework for Continuing Care with standard national eligibility criteria. Some people will be assessed as being eligible for a package of continuing care jointly funded by health and social services. Councils retain the responsibility to support carers when the person cared for moves to Continuing Care, but these changes have caused confusion in some areas. There is a Trust guidance document available on this.

Direct payments rules change and personal budgets If enacted, the Health and Social Care Bill (clause 138) will make it easier for third parties, including carers and voluntary sector organisations, to receive Direct Payments on behalf of service users who are unable to consent to receiving direct payments, as defined by the existing rules in Section 57 of the Health and Social Care Act 2001. Under the Bill, most deputies appointed for service users under the Mental Capacity Act 2005 will automatically be eligible to receive payments. In most other cases, transfer of Direct Payments to third parties will have to be approved by councils. Regulations could require family members to be consulted before a person is approved. There may also be CRB check requirements. The Bill applies to England and Wales but the timescales for implementation may vary between the two nations.

The Department of Health has said that, “by April 1 next year, everybody who is in receipt of a social care package knows the amount of money being spent on them by the local authority social care department and knows they have a choice to re-look at how that money is being spent and whether it could be spent differently."

Carers and health services/ NHS The Trust’s good practice guide for GPs, in partnership with the Royal College of GPs, is with the designers for an autumn roll-out. Thanks for all your contributions of good practice and comments. Meanwhile, the BMA has produced new guidelines for health professionals on supporting carers at www.bma.org.uk/ap.nsf/Content/Workingwithcarers. The BMJ learning website also contains a module called Supporting Carers, referencing material developed by The Princess Royal Trust for Carers. Access for BMJ subscribers only is via http://learning.bmj.com. Local government

LAAs Various sources suggest that supporting carers (National Indicator 135) has been adopted as a Local Area Agreement target by a majority of English local authorities, which is encouraging. We are working with CSCI and others on the consultation on the draft Performance Assessment Framework (closing date 8 August). We are interested in finding out if carers are being involved in developing local Joint Strategic Needs Assessments.

Ombudsman ruling against Trafford Council The Journal of Community Care Law reports that the Local Government Ombudsman (LGO) found Trafford Council had been guilty of maladministration because, when the planned period of short term residential care for a severely disabled woman ended, it ceased the funding without making alternative arrangements. “Daisy” had been assessed as having critical needs under FACS. An alternative placement was rejected by her parents but no further offers were made, and so her parents were forced to bring her home to live with them. Some of the findings of maladministration were:

• Failure in transition planning – “no serious attempt” was made to find an alternative placement for Daisy. • Parents were unfairly blamed as unreasonably refusing alternative placements – there was no evidence of this.

• The organisation running the transitional placement said that Daisy could remain but the council rejected this as unsuitable, despite later suggesting she stay there for respite. This inconsistency was maladministration. • No assessment of home care needs once Daisy was living at home with her parents. Her original assessment was directed towards her needs in a completely different residential care environment. • No carers assessment – Daisy’s parents were clearly struggling to look after her at home and approached the council for assistance. The council should have taken the initiative and carried out a Carers’ Assessment. The LGO went on to recommended one of the largest ever awards of compensation for maladministration, but Trafford Council took the unusual step of refusing to implement the LGO’s compensation recommendation and offered much less. The LGO has published a further report criticising the council on this. Service development

Finding your local carers statistics From time to time, we are asked, “How do I find out how many carers (sometimes of a particular age group) there are in my authority/ region etc?” The census figures for carers in each area are at: www.nomisweb.co.uk/Default.asp. To get the figures for carers in your local authority area:

1. Choose Advanced Query in the box on the right hand side. 2. Choose “census of population” then “2001 census standard tables” from the folders list. 3. From the menu on the left hand side of the next page, click “choose analysis”. 4. Select “complete standard tables”. 5. Use the menu on the next page to choose the required geography (by local authority, country, etc.) and the required table (e.g. SO25 Carers by age and health). 6. Then “download data” – it arrives as an Excel spreadsheet

First Stop The First Stop advice service for older people and their carers will be launched on 27 August,with marketing starting in the South East and London. It is a web- and phone-based service from Counsel and Care, Elderly Accommodation Counsel, Help the Aged and NHFA Care Fees Advice, offering advice on care and support options, housing, finance and rights. www.firststopcareadvice.org.uk.

Working with Care Homes We have had some contact with two representative bodies of care home providers and will be feeding in a carers’ perspective to a group looking at improving the quality of care home provision. It has been suggested that where care homes are purchasing training for their workers, they may be able to offer training to carers and that government should explore making it easier for care homes to offer respite care packages for people who, in the future, are likely to need a permanent place, to ease transition, although this would be controversial. Do you have any examples of working with care homes, or a particular interest in keeping in touch with this strand of work?

Carers and housing Carers Support North Wiltshire works with Westlea Housing Association to cross reference their databases. They found that over 45% of carers on the Carers Centre database resided in an association property and of those over 40% were parent carers. As a result, the housing association has provided £16,500 per annum for three years to develop a Volunteer Co-ordinator/Activities worker to help sustain tenancies and support

carers. For more information, please contact Lindsay Poulsom (Joint CEO) Carers Support North Wilts at [email protected] or 01249 444110.

The Supporting People grant programme funds housing-related support services to help 1.2 million vulnerable people maintain or improve their ability to live independently, such as helping an older person stay in their own home. The key focus of the programme is on getting the right services and outcomes for vulnerable people. The broad types of need focused on are: people for whom housing related support underpins health and social care services; people who need a small amount of support to remain independent; and people experiencing or at risk of social exclusion. Carers are a group that could be supported through this programme, but are not widely linked into local schemes. For more information, see www.communities.gov.uk/housing/housingmanagementcare/supportingpeople/

Stroke services funding Building on the new National Stroke Strategy (Trust Guidance available), every local authority in England will be encouraged to appoint a dedicated Stroke Care Coordinator to support stroke survivors and their carers, with funding of £77 million over the next three years to develop innovative new approaches to delivering stroke services and support areas of poor performance. Every Strategic Health Authority will receive £2.4 million over three years for acute services, whilst local authorities will get a ring-fenced grant averaging £100,000 per annum which could fund:  A stroke care coordinator, especially where local authorities do not currently have a specialist, social care focussed, approach to supporting people and their carers affected by stroke.  Counselling and emotional support.  Support to get back to work, for example through a vocational rehabilitation scheme.

Highlighted approaches such as early supported discharge and moving rehabilitation into a community setting could be delivered by partnerships of carers’ services and stroke services/ health providers.

Practice Based Commissioning The DH’s annual survey of Practice Based Commissioning (PBC) has shown that PBC continues to become more widespread, with 57% of practices now having agreed a commissioning plan with their PCT. There has been a rise in the proportion of practices reporting that they now engage with their local population, suggesting increased opportunities for communities and the third sector to influence commissioning.

Demonstrating the benefits of identifying and referring carers to the NHS Carers in Hertfordshire undertook some in-depth research with carers in one GP practice in their area. They compared outcomes for a sample of carers who had been referred to the Carers’ Centre for information and support with those who had not been referred. Carers who were referred were:

 Twice as likely to feel well-informed about rights and services.  Twice as likely to know what to do in a crisis.  Five times as likely to have had a benefits check.  More likely to have had a break in the last year.  More likely to use alternative care services.  More confident about accessing leisure, education or work.

For more information and a full copy of the report, contact Sue Reeve, Carers in Hertfordshire 01992 586969 www.carersinherts.org.uk/pdf%20files/Publications/GPCarers_Sep05.pdf .

The Harrogate, Craven and Airedale Carers Resource has also produced compelling figures in its comprehensive Primary Care report. Carers put emotional support and personalised information at the top of

their list of needs and there was a huge difference in numbers of carers accessing specialist support between carers registered at GP practices working with the Carers Resource, and those registered at practices who are not.

Evaluation of Carers Support Workers in GP Surgeries Torbay Council commissioned Manchester PSSRU to evaluate the use of Carers Support Workers in GP Surgeries in 2002. General Health Questionnaires (GHQ) were used with 68 randomly selected carers. There was a highly significant reduction in distress amongst the carers during the time they received the service from the Carers Support Workers. Despite over half of carers saying that they were in good health, overall GHQ scores at referral/ commencement were high, indicating the presence of a variety of psychiatric symptoms. In fact, in terms of a traditionally used cut off score on the GHQ-12 (1/2) to identify cases of psychiatric disorder in primary care, 94% of the carers could be identified as having psychiatric disorders at Time 1. After receipt of the Carers Support Workers, the proportion of carers who could be identified as symptomatic cases reduced by 21%. In particular, the proportion of carers experiencing problems with concentration and sleeplessness reduced substantially. The majority (70%) found the Carers’ Support worker to be ‘very helpful’. In addition, the majority of carers perceived the service as making a difference to their situation. Fifty six per cent were of the opinion that the Carers Support Workers ‘very much’ made a difference, whilst 31% felt that they made ‘a little difference. For more information, please contact James Drummond, Torbay Care Trust at [email protected]

Surgery Link in Gloucester ‘Surgery Link’ provides trained team members to visit Surgeries once every 4-6 weeks, raising awareness of carer services among health professionals, and increasing referrals. Currently the team has links with 56 surgeries around the county. Enthusiasm for contact about carer issues varies with many nurses, practice staff and receptionists ahead of their GPs on this issue. The service includes regular personal delivery of business card style flyers, carer noticeboards and A4 folders of information to practice managers and visits to speak to practice teams. Most surgeries nominate a team member, often a nurse, as their carers’ lead. One surgery operates a carers’ group in partnership with a nearby care home that can support cared for people whilst the carers meet. A nominated receptionist in one surgery phones all carers aged 65+ on a monthly basis. Carers outreach workers approached patients waiting for ‘flu jabs with information in some surgeries and some have monthly carer clinics with both practice and Carers’ Centre staff present.

For more information, contact Roger Hare, Carers Gloucestershire at [email protected].

Parliamentary and lobbying

Carers to get protection at work following landmark European Court of Justice case The European Court of Justice ruled on the case of parent carer Sharon Coleman. The laws protecting disabled people against discrimination not only apply to the person themselves, but also to their carer. Our response is on www.carers.org and there is detailed information on www.carersuk.org

Accessible Toilets Thousands of people with profound and multiple learning disabilities and their carers cannot use standard accessible toilets. Changing Places toilets have enough space for disabled people and their carers, a height adjustable changing bench and a hoist, allowing families to spend days out in town centres and other places that other families take for granted. A number of local authorities now have this facility, which costs around £8,000 above the costs of an ordinary accessible toilet. For more information, see www.changing-places.org

Subscribe for free This ebulletin gets sent every two months to members of our Local Authority / PCT Carers Leads Network. To join, send a blank email to [email protected].

There is a similar group for young carers leads: [email protected]

Contact details for policy issues: Alex Fox, Director of Policy and Communications, [email protected] 0113 2688817

Appendix: Ivan Lewis (Carers Minister) and Anne McGuire (Pensions Minister) giving evidence to the Work and Pensions Select Committee on June 18th.

Chairman: The Committee, as you know, visited Australia, and we were very impressed with their Commonwealth Carer Respite Centres. We have also seen a Carers' Centre here in the UK. They do seem to do a brilliant job of pulling everything together. Is there any intention of developing that sort of thing more widely?

Mr Lewis: We obviously have a number of Carers' Centres in this country. The Princess Royal Trust for Carers has done an excellent job. We know that in many local communities, a combination of the voluntary sector and local authorities have developed Carers' Centres. The reality is that carers do value and welcome having somewhere they can go, where they can be themselves, where they can have space, and where they can talk about whatever they want to talk about. It might be about themselves, it might be about their caring situation, it might be about some of the anxieties and stresses involved in being a carer. One recently opened in my own borough. I went to open it during Carers Week last week. We should not forget what we have done to facilitate those Carers' Centres. There is a danger, when you talk about a new strategy, of forgetting all that you have done in the past eight or nine years. We have put unprecedented levels of money into them, through the annual Carers' Grant to every single local authority. A lot of local authorities, I am glad to say, have entered into partnerships with the voluntary sector and have developed Carers' Centres. Carers' Centres have evolved from that, as well as from the tremendous work that the Princess Royal Trust for Carers has done, often in partnership with local authorities, but not exclusively. The Department of Health has a budget called section 64, which it spends with the voluntary sector, and I am doing a fundamental review of that at the moment. It is about £20 million a year […. ] We are very seriously considering making projects offering emotional support to carers (that is, Carers' Centres) as one of the priorities for that grant aid in the future. We have not made a definite decision on it but we are looking at that the moment.

Q161 Chairman: We went to the Princess Royal Trust for Carers at Harrogate. It is absolutely brilliant.

Mr Lewis: It is probably one of the best in the country.

Q162 Chairman: It is not a drop-in centre; it provides tremendous hands-on support. You will see in the report some heart-rending stories from the child carers. They do not want, if you like, the namby-pamby, "Come in here and have a cup of coffee," and an arm around the shoulder, but real, practical advice.

Mr Lewis: The one in Bury is going to be as good as the one in Harrogate, I promise.

Q163 Chairman: But it is in Lancashire. It cannot be!

Mrs McGuire: In Sunderland they have a very similar approach. They work in partnership with a range of organisations. I was up there recently. As a carers' organisation working with JobCentre Plus, they see employment support as being crucial to the support they offer their members or those who just want to come in. I heard some fantastic tales of people who initially came in for that element of "soft support" but then had opportunities opened up to them, particularly in the employment field. Again, that was done very much in partnership with the local JobCentre Plus, and, indeed, I think we have used an example from Sunderland in the strategy.

Mr Lewis: It is a good illustration of listening. The woman who runs the Harrogate Centre is a very impressive person indeed. She was at a roundtable meeting with the Princess Royal and a number of other people, and she gave me some very hard data on what the centre did and what mattered to carers, based on their contact with carers. The interesting thing, Chairman, is that top of the list when asking carers what mattered was emotional support. Up until that point, I have to say, emotional support had not featured that heavily in the strategy we were developing. Her presentation and her hard, if you like, intelligence, did influence the

fact that the strategy does have quite a significant strand on emotional support. Anne is absolutely right, before carers will move on to talk about "a life of our own alongside caring" - whether it be employment, social and leisure networks, childcare, whatever - having that space to open up is absolutely crucial and all the evidence supports that.

Chairman: This is not in any way a special plea, but the one of the issues highlighted by both Carers' Centres, but it was very stark at Harrogate, was that they get funding from three PCTs, the county council, the usual Lottery bid. There are about seven different streams of funding, 80 per cent of which expires before the end of the year. There is hope of getting it renewed, but it is that core funding that allows the basic operation, and everything else should be a bonus.

See: www.publications.parliament.uk/pa/cm/cmworpen.htm#evid for full transcript.

Alex Fox Director of Policy and Communications [email protected] Page 8 / 11/05/2018 www.carers.org