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Norfolk Health Overview and Scrutiny Committee Date: Thursday 13 October 2011 Time: 10.00am Venue: Edwards Room, County Hall, Norwich
Persons attending the meeting are requested to turn off mobile phones. Members of the public or interested parties who have indicated before the meeting that they wish to speak will, at the discretion of the Chairman, be given five minutes at the microphone. Others may ask to speak and this again is at the discretion of the Chairman.
Membership MAIN MEMBER SUBSTITUTE MEMBER REPRESENTING Mr J Bracey Mr P Balcombe Broadland District Council Mr D Bradford Ms J Storie Norwich City Council Mr M Carttiss Mr T Garrod / Ms D Irving / Norfolk County Council Miss J Virgo Mrs J Chamberlin Mr T Garrod / Ms D Irving / Norfolk County Council Miss J Virgo Michael Chenery of Mr T Garrod / Ms D Irving / Norfolk County Council Horsburgh Miss J Virgo Mr S Dorrington Mr T Garrod / Ms D Irving / Norfolk County Council Miss J Virgo Mr R Bearman Mr S Little Norfolk County Council Mr D Harrison Mr J Joyce Norfolk County Council Lady Fisher Mr R Kybird Breckland District Council Dr N Legg Mr C Foulger South Norfolk District Council Mrs A Claussen- Mr B Jarvis North Norfolk District Council Reynolds Mr J Perry-Warnes Mr T Garrod / Ms D Irving / Norfolk County Council Miss J Virgo Mr G Sandell Mr J Collop King’s Lynn and West Norfolk Borough Council Mrs S Weymouth Mrs P E Page Great Yarmouth Borough Council Mr A J Wright Mr T Garrod / Ms D Irving / Norfolk County Council Miss J Virgo For further details and general enquiries about this Agenda please contact the Committee Administrator: Tim Shaw on 01603 222948 or email [email protected] 1. To receive apologies and details of any substitute members attending
2. Glossary of Terms and Abbreviations
Terms and abbreviations used in the agenda papers. (Page )
3. Minutes
To confirm the minutes of the meeting of the Norfolk (Page ) Health Overview and Scrutiny Committee held on 7 July 2011.
4. Members to Declare any Interests
Please indicate whether the interest is a personal one only or one which is prejudicial. A declaration of a personal interest should indicate the nature of the interest and the agenda item to which it relates. In the case of a personal interest, the member may speak and vote on the matter. Please note that if you are exempt from declaring a personal interest because it arises solely from your position on a body to which you were nominated by the County Council or a body exercising functions of a public nature (e.g. another local authority), you need only declare your interest if and when you intend to speak on a matter.
If a prejudicial interest is declared, the member should withdraw from the room whilst the matter is discussed unless members of the public are allowed to make representations, give evidence or answer questions about the matter, in which case you may attend the meeting for that purpose. You must immediately leave the room when you have finished or the meeting decides you have finished, if earlier. These declarations apply to all those members present, whether the member is part of the meeting, attending to speak as a local member on an item or simply observing the meeting from the public seating area.
5. To receive any items of business which the Chairman decides should be considered as a matter of urgency
6. Chairman’s announcements
7. 10:10 – Services for Adults with Autism 10:55 An update from NHS Norfolk, Community Services and (Page ) the Learning Difficulties service on progress with commissioning services for adults with autism in line with national guidance on implementation of the Autism Strategy.
8. 10:55 – Children’s Autism Services 11:20 Report of the task and finish group. (Page )
11:20 – Break at the Chairman’s discretion 11:30
9. 11:30 – Hospital Discharge Processes 12:20 An update from Norfolk LINk on the acute hospitals and (Page ) Community Services’ progress with implementing LINk recommendations accepted on 25 November 2010.
10. 12:20 – Forward Work Programme 12:30 To consider and agree the forward work programme. (Page )
Chris Walton Head of Democratic Services
County Hall Martineau Lane Norwich NR1 2DH
Date Agenda Published: 2011
Main Committee Members have a formal link with the following local NHS Trusts:
Mr A Wright – NHS Norfolk (PCT) Mr G Sandell and Mr A Wright – Queen Elizabeth Hospital, King’s Lynn NHS Foundation Trust Mr J Bracey – Norfolk and Waveney Mental Health NHS Foundation Trust. Mrs S Weymouth – NHS Great Yarmouth and Waveney (PCT). Dr N Legg – Norfolk and Norwich University Hospital NHS Foundation Trust Mr M Carttiss and Mrs S Weymouth – James Paget University Hospital NHS Foundation Trust
Mrs J Chamberlin – Norfolk Community Health and Care NHS Trust
NORFOLK HEALTH OVERVIEW AND SCRUTINY COMMITTEE PROGRAMME OF FUTURE MEETINGS
24 November 2011 1 March 2012 19 January 2012 12 April 2012
If you need this Agenda in large print, audio, Braille, alternative format or in a different language please contact Tim Shaw on 0344 800 8020 or Textphone 0344 800 8011 and we will do our best to help.
NORFOLK HEALTH OVERVIEW AND SCRUTINY COMMITTEE MINUTES OF THE MEETING HELD ON 7 JULY 2011
Present: Mr J Bracey (in the Chair) Broadland District Council Mr D Bradford Norwich City Council Mrs J Chamberlin Norfolk County Council Michael Chenery of Horsbrugh Norfolk County Council Mrs A Claussen-Reynolds North Norfolk District Council Mr S Dorrington Norfolk County Council Mr R Bearman Norfolk County Council Mr D Harrison Norfolk County Council Dr N Legg South Norfolk Council Mr J Perry-Warnes Norfolk County Council Mr G Sandell King’s Lynn and West Norfolk Borough Council Mrs S Weymouth Great Yarmouth Borough Council Mr A J Wright Norfolk County Council
Substitute Members Present: Lady Karen Fisher for Mr R Kybird, Breckland District Council
Member Observing: Miss J Virgo, Norfolk County Council
Also Present: Stephen Rogers Partnership Funds Manager, Community Services, Norfolk County Council Tim O’Rourke Consultant working for Community Services, Norfolk County Council David Sparkes Norfolk Local Involvement Network in Transition Sue Humphrey Parent of someone who uses 3 Mill Close at Aylsham Anne Landamore Parent of someone who uses 3 Mill Close at Aylsham Jim Barker Programme Manager, Unplanned Care, NHS Norfolk Nikki Cocks Director of Independent Contracts and Providers, NHS Norfolk Peter Spears Independent Providers and Out of Hours Contracts Manager, NHS Norfolk Lyn Reynolds Associate Director of Primary Care Operations, East of England Ambulance Service NHS Trust Dr Nick Morton Associate Clinical Director, East of England Ambulance Service NHS Trust Patrick Thompson Norfolk Local Involvement Network in Transition David Harwood Cabinet Member for Adult Social Services at Norfolk County Council Catherine Assistant Director of Community Services at Norfolk County Underwood Council Debbie Olley Assistant Director of Community Services at Norfolk County Council Ruth Hannent Care Quality Commission Anthony Darwood Norfolk Local Involvement Network in Transition - 1 - Andrew Stronach NNUH Julie Bruce NORCAS Graham Dunhill Norfolk Local Involvement Network in Transition Maureen Orr Scrutiny Support Manager (Health) Chris Walton Head of Democratic Services Tim Shaw Committee Officer
There were also other parent carers and users of 3 Mill Close Aylsham at the meeting.
1 Apologies
Apologies for absence were received from Mr M Carttiss and Mr R Kybird.
2 Glossary of Terms and Abbreviations
Members received a glossary of the terms and abbreviations used in the agenda papers.
3 Minutes
The minutes of the previous meeting held 26 May 2011 were confirmed by the Committee and signed by the Chairman.
4 Declarations of Interest
Mr S Dorrington declared a personal interest as an owner of care homes for the elderly.
Mr J Perry-Warnes declared a personal interest as a Member of the Friends of Kelling Hospital.
Mr G Sandell declared a personal interest as he worked part time with those with learning difficulties.
Mr D Harrison declared a personal interest as a Member of the St Michael’s Care Development Committee.
Mr A Wright declared a personal interest as a Member of the King’s Lynn and West Norfolk Mental Health Forum.
5 Items of Urgent Business
There were no items of urgent business.
6 Chairman’s Announcements
The Chairman said that since the agenda for today’s meeting had been drawn up, North Norfolk District Council had appointed Mrs Annie Claussen-Reynolds (named Member) and Mr Ben Jarvis (substitute Member). The Borough Council of King’s Lynn and West Norfolk had reappointed Mr Gary Sandell (named Member) and appointed Mr John Collop (substitute Member).
- 2 - The Chairman said that the usual meeting of the Committee on 1 September 2011 had been cancelled and a seminar on the new health reforms would be held on that day instead. The seminar was open to Members and substitute Members of this Committee and other County Councillors. The Clinical Commissioning Groups, Public Health Groups and Members of the Shadow Health and Wellbeing Board, including Norfolk LINk in Transition, would be invited to join Committee Members to discuss accountability and working relationships in the new health system. A programme for the day’s activities would be circulated nearer the time.
7 Proposed Changes to NHS Provided Respite Services for Adults with Learning Difficulties: 3 Mill Close, Aylsham and Formerly at 4 Park View, King’s Lynn
The Committee received a suggested approach from the Scrutiny Support Manager (Health), to a report from the Pooled Fund Commissioners (NHS Norfolk, NHS Great Yarmouth and Waveney and Norfolk County Council) about the outcome of consultations with service users and their families on proposals to discontinue NHS provided respite care for adults with learning difficulties at 3 Mill Close, Aylsham. The Committee received evidence from Stephen Rogers, Partnership Funds Manager, Community Services, Norfolk County Council, Tim O’Rourke, Consultant working with Community Services, Norfolk County Council, David Sparkes, Norfolk Local Involvement Network in Transition, and from two parents of those who received respite at 3 Mill Close.
In hearing from the witnesses and in answer to Members’ questions, the Committee noted the following:
The Pooled Fund Commissioners assured the Committee that the existing service would continue at 3 Mill Close until such time as a suitable alternative was in place.
Members were of the view that the respite service provided at 3 Mill Close should not be undervalued.
It was pointed out by the Pooled Fund Commissioners that 3 Mill Close provided a service to approximately 30 families that included some of the most disabled and vulnerable people in Norfolk. One of the parents said that they could make use of the service for three nights a month and that it was an essential service.
The Pooled Fund Commissioners said that they wanted to remain in close contact with all the families that would be affected by the change in service and were willing to hold meetings with them in the Norwich area if this was what they preferred.
The funding that was currently allocated for use at 3 Mill Close would be used to fund the new service. There was insufficient funds to expand the service so as to make use of premises next door to 3 Mill Close.
The redesigned service would mean that more people were able to benefit from it.
- 3 - The chosen site would need to be situated in the centre of the county and have good public transport links.
Norfolk LINk in Transition had visited the service at Mill Close. They were of the opinion that there was a need to continue with a five bed respite care specialised nursing service going forward and supported the intention of the Pooled Fund Commissioners to deliver a service that captured all the previously highlighted key benefits of Mill Close.
The local NHS (Norfolk Community Health and Care) and alternative providers would be able to submit competitive bids to provide the new service. There was no guarantee that Norfolk Community Health and Care would win the contract.
There would be a two stage tendering process that followed established County Council procedures. The contract to provide the new service was expected to be awarded in October or November 2011. No timetable had been set for when the new service would start. The families would be fully involved in the tendering process.
The Committee was of the opinion that the existing staff at Mill Close should be kept fully informed of developments regarding the tendering process.
The Pooled Fund Commissioners were asked to bring an update report to the Committee at a suitable date that would be agreed with them. Norfolk LINk in Transition was asked to visit the new service provider to ascertain its adequacy from the point of view of users and carers and report back to the Committee at a future date. Mr David Harrison was nominated to join Norfolk LINk in Transition on that visit, which had yet to be arranged with the Pooled Fund Commissioners and Norfolk LINk in Transition.
8 GP Out of Hours Services
NHS Norfolk and the East of England Ambulance Service NHS Trust (EEAST) had responded to recommendations made by the Committee on 20 January 2011 concerning GP out of hours services. The Committee received a suggested approach from the Scrutiny Support Manager (Health) and evidence from Jim Barker, Programme Manager, Unplanned Care, NHS Norfolk, Nikki Cocks, Director of Independent Contracts and Providers, NHS Norfolk, Peter Spears, Independent Providers and Out of Hours Contracts Manager, NHS Norfolk, Lyn Reynolds, Associate Director of Primary Care Operations, East of England Ambulance Service NHS Trust and Dr Nick Morton, Associate Clinical Director, East of England Ambulance Service NHS Trust.
During the course of discussion, Members noted the following answers from NHS Norfolk and East of England Ambulance Service NHS Trust (EEAST) in relation to some of the previous recommendations from the Committee that had been rejected or only partly accepted:
Recommendation 1. The service information leaflet would in future include reference to key National Quality Requirements (NQRs) and a cross-reference to the website for full details.
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Recommendation 2. A trajectory for improvement against NQR 12 (home visits) had been set and was on track.
Recommendation 4. NHS Norfolk was satisfied that EEAST’s outcome recording was accurate.
Recommendation 5. NHS Norfolk would encourage GP practices to provide direct call transfer to Medicom through the emerging Clinical Commissioning Groups.
Recommendation 6. NHS Norfolk and EEAST were continuing to work with the care home sector and would look to extend communication to providers that were not Members of Norfolk Independent Care.
Recommendation 7. The issue of co-location of the GP out of hours service and the Accident and Emergency Service would be addressed during the procurement of more integrated services in Norfolk.
The Committee noted that Notice had been served on the current GP out of hours contract (as agreed by both parties) and a new procurement process had started.
9 Forward Work Programme
The Committee agreed its Forward Work Programme should be as set out in the report.
It was suggested that the merger of Norfolk and Suffolk Mental Health Trusts should be a potential topic for 24 November 2011. It was pointed out that if the merger went ahead as planned and in line with the Trusts’ last report to the Committee, the Committee could receive an update through its Member Briefing. If the merger was not going ahead, the Norfolk and Waveney Mental Health NHS Foundation Trust could be invited to update the Committee on how it would adapt to the new circumstances.
The meeting concluded at 12.05 pm
Chairman
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- 5 - Item 2
Norfolk Health Overview and Scrutiny Committee 13 October 2011
Glossary of Terms and Abbreviations
ADHD Attention Deficit Hyperactivity Disorder ADOS Autism Diagnosis Observation Schedule A&E Accident and emergency AS Aspergers Syndrome ASC Autism Spectrum Conditions ASD Autistic Spectrum Disorders ASSD Adult Social Services Department (now called Community Services) CAMHS Child and adolescent mental health services CCG Clinical Commissioning Group CQC Care Quality Commission ENT Ear, nose and throat FACS Fair Access to Care Services GP General practitioner HFA High functioning autism HMP Her Majesty’s Prison HOSC Health Overview and Scrutiny Committee IQ Intelligence Quotient JPUH James Paget University Hospital JSNA Joint Strategic Needs Assessment LD Learning difficulties LINk Local Involvement Network LDDF Learning Difficulties Development Fund MAA Multi Agency Assessment NAPC National Autism Plan for Children NCH&C (NCHC) Norfolk Community Health and Care NHS Trust NCC Norfolk Care Connect NCS Norfolk Community Services (part of Norfolk County Council) NHOSC Norfolk Health Overview and Scrutiny Committee NHS National Health Service NHS GY&W NHS Great Yarmouth and Waveney NIASA National Initiative for Autism Screening and Assessment NICE National Institute for Health and Clinical Excellence NNUH Norfolk and Norwich University Hospital NLDS Norfolk Learning Disabilities Service NPAC National Autism Plan for Children OCD Obsessive Compulsive Disorder ONS Office of National Statistics OSC Overview and Scrutiny Committee OT Occupational Therapist / Therapy PALS Patient Advisory Liaison Services PCT Primary Care Trust QEH Queen Elizabeth Hospital, King’s Lynn QIPP Quality, Innovation, Productivity and Prevention: A DoH agenda, Item 2
looking at health economy solutions to meet local financial challenges QOF Quality outcomes framework RAP Referrals assessments and packages of care RAT Rapid action team. SEN Special Educational Needs SRB Specialist Resource Bases TTOs To Take Out – i.e. medicines to take home from hospital WTE Whole time equivalent
Norfolk Health Overview and Scrutiny Committee 13 October 2011 Item no 7
Services for Adults with Autism
Suggested approach by the Scrutiny Support Manager (Health)
Integrated commissioners, NHS Norfolk and Norfolk County Council Community Services, have been invited to update the Committee about their response to Government guidance on implementation of the Adult Autism Strategy for England.
1. Introduction
1.1 On 14 October 2010 Norfolk Health Overview and Scrutiny Committee (NHOSC) received a report from NHS Norfolk about the commissioning of services in Norfolk for adults with autism. The Committee also heard the concerns of representatives from Autism Anglia and Asperger East Anglia about the increasing numbers of adults with autism, the pathway to diagnosis and the level of support available. Norfolk Local Involvement Network (LINk) highlighted the need for more joint working with the Prison Service on this subject.
1.2 Mindful of the fact that the Government was due to publish guidance in 2011 on how to measure progress on improving services for adults with autism, NHOSC asked the integrated commissioners to report back on their progress in the light of that guidance.
2. ‘Fulfilling and Rewarding Lives: Evaluating Progress’
2.1 Fulfilling and Rewarding Lives’ is the adult autism strategy for England; it was published in March 2010 following the Autism Act 2009. ‘Fulfilling and Rewarding Lives: Evaluating Progress’ was published on 1 April 2011 and provides guidance for local authorities and the NHS on how they should measure progress on improving services for adult with autism. The document is available on the Department of Health website:-
www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_125703
2.2 The guidance includes possible indicators for measuring change locally, which local services can use ‘if they wish’. The document makes clear that these ‘are not directives’ and that local areas may identify more suitable indicators or have equally effective existing outcome measurement tools. Consequently local areas are not required to measure their performance against these outcomes or publish results, but the document expresses a ‘hope that they will choose to do so as a means of assessing their own progress against the vision in the strategy’.
2.3 The guidance sets out ten steps that have been identified as valuable foundations for service improvement in an area. They are:-
1. Appointing a local autism lead. 2. Including autism within key procedures. 3. Collecting and collating relevant data about adults with autism. 4. Developing an integrated commissioning plan around services for adults with autism 5. Developing a plan to deliver appropriate levels of training to front-line staff. 6. Mapping local employment services that support adults with autism. 7. Mapping local voluntary services and groups that support adults with autism 8. Involving adults with autism, their families and carers in service design and planning. 9. Developing and implementing a staff survey about working with adults with autism. 10. Learning from and sharing best practice.
3. Purpose of today’s meeting
3.1 The integrated commissioners of services for adults with autism, NHS Norfolk and Norfolk County Council Community Services, have been invited to report on their progress in the light of the ‘Fulfilling and Rewarding Lives: Evaluating Progress’ guidance. Their report, which is also supported by Norfolk Learning Difficulties Service, is attached at Appendix A.
3.2 Representatives of the commissioners NHS Norfolk and Community Services and the Clinical Lead of the Aspergers Service Norfolk have been invited to attend today’s meeting to answer the Committee’s questions.
4. Suggested approach
4.1 After hearing from the commissioners, Members may wish to question the representatives on the following areas:-
(a) Are the commissioners planning to evaluate their progress in line with the ‘Fulfilling and Rewarding Lives: Evaluating Progress’?
(b) Do they intend to use any other local success measures identified by service users, their families and representatives?
(c) What is the local situation against each of the 10 ‘foundations’ listed in paragraph 2.3?
(d) How much progress has been made on collecting data to measure service outcomes for adults with autism?
(e) What steps are being taken to deliver the three ‘ambitions’ of the
outcomes framework?
1. Local authorities and partners know how many adults with autism live in the area 2. A clear and trusted diagnostic pathway is available locally 3. Health and social care staff make reasonable adjustments to services to meet the needs of adult with autism.
(f) What is being done locally to improve management of adults with autism in the criminal justice system?
If you need this report in large print, audio, Braille, alternative format or in a different language please contact Maureen Orr on 0344
800 8020 or Textphone 0344 800 8011 and we will do our best to help.
Report to Norfolk Health Overview and Scrutiny Committee October 2011
Agenda Item No……..
Norfolk’s ongoing Approach to developing a Commissioning Strategy and Delivering Services to people with Autistic Spectrum Disorder
Report by
Clive Rennie, Assistant Director, Integrated Adult Health & Social Care Commissioning - Mental Health and Stephen McCormack, Commissioning Manager, Mental Health & Learning Disabilities, NHS Norfolk and Dr Penny Morgan, Clinical Lead, Asperger Service Norfolk, Norfolk Learning Difficulties Services
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Summary Nationally Government has recognised that Autism/Autistic Spectrum Disorder (autism) is a serious and disabling condition for adults and without the right support it can have a profound, sometimes devastating, effect on individual adults and for their families Government believes that long-term, cultural change embodied in this vision can only be achieved by putting ownership/responsibility in the hands of ‘professionals on the front line’. It requires improved understanding of autism in public services and wider society and increased ability to tailor services to meet the real needs of adults with autism locally. Since the Autism Act 2009 a series of reports and investigations provided support and guidance to enable localities to work towards development of a local Strategy. In Norfolk services are increasingly becoming available to meet some of the needs of people with autism and although specialist support may be required to access other health services and social care services all public bodies must affect reasonable adjustments Developments and progress has been made in line with the national guidance under Fulfilling and Rewarding Lives even though only very recently specific outcomes and service deliveries frameworks have been issued With strong stakeholder engagement, Norfolk developed and delivered Asperger Service Norfolk providing assessment and increasingly specialist support services to adults with Higher Functioning Autism/Asperger’s Syndrome A Joint Strategic Needs Assessment helps to better understand the overall needs and requirements and will be used by the Norfolk leads for Autism to progress on behalf of the Director of Adult Community Services his responsibilities under the guidelines.
Outcomes and Services Ambitions Seven quality outcomes provided through national guidelines that will show progress are: 1. Adults with autism achieve better health outcomes 2. Adults with autism are included and economically active 3. Adults with autism are living in accommodation that meets their needs 4. Adults with autism are benefiting from the personalisation agenda in health and social care, and can access personal budgets 5. Adults with autism are no longer managed inappropriately in the criminal justice system 6. Adults with autism, their families and carers are satisfied with local services 7. Adults with autism are involved in service planning. Three key ambitions to enable local communities assess how services are moving towards achieving outcomes are: 1. Local authorities and partners know how many adults with autism live in the area 2. A clear and trusted diagnostic pathway is available locally 3. Health and social care staff make reasonable adjustments to services to meet the needs of adults with autism
Action required The Committee is asked to: 1. Note progress achieved in Norfolk over the last 12 months since the national consultation on the Autism Guidelines principally through the Norfolk Learning Disabilities Health Self- assessment Framework and the initial annual report of the Asperger’s Services. 2. Support the approach outlined in this Report which is believed will enable the further development of a formal Norfolk-wide Joint Commissioning Strategy for people with Autism with stakeholder engagement with progress measured against the Outcomes above. 3. Support plans for even greater engagement across the whole pathway of health and social services, especially Foundation Trusts which under the guidelines are specifically required to ensure that the requirements of people with autism in their services planning and with Clinical commissioning Groups (CCG).
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1.0 BACKGROUND
1.1 Appendix 1 gives the information provided to the Committee 12 months ago as background to our report to the Committee.
1.2 Within this overall summary report we refer to ‘autism’ to reflect people with a condition across the Autistic Spectrum Disorder including those people with a definition of Asperger’s Syndrome but not ignoring the specific aspects of that condition which can differentiates these people significantly in their needs from other people ‘lower’ on the autistic spectrum.
2.0 EVALUATING PROGRESS 2.1 The first ever strategy for adults with autism in England, Fulfilling and Rewarding Lives, published in March 2010 was mandated by the Autism Act 2009. The strategy sets out the long-term national vision and ambition to improve the lives of adults with autism.
Fundamental within the philosophy of Fulfilling and rewarding lives is that the previous Government and now the current coalition Government believe that public services should work better together to better meet the needs of adults with autism. While in part that may mean the development and delivery of some specialist or dedicated autism services in response to locally identified needs and priorities, it also reflects the need for all public services to be more effective and more personalised for adults with autism.
2.2 Fulfilling and Rewarding Lives: The Strategy for Adults with Autism – Evaluating Progress (2011) [Appendix 2] and Essential Quality Outcomes for Local Self-assessment Framework [Appendix 3] have been published this year to help support Local Authorities and NHS organisations and their partners to implement the statutory guidance ’Implementing ‘Fulfilling and rewarding lives’ in their localities.
2.3 The Self -assessment Framework is primarily for commissioners as a template to begin planning to respond to the statutory guidance. As with the Self- assessment Framework which has been used over the last 3 or 4 years for Learning Disability services it is not intended to be used by people with autism or their carers, but it is expected that they would be part of any local self- assessment planning processes.
In addition to this, we have been reminded that it is important to be aware of the consultation currently taking place on the future of the NHS following the NHS White Paper. In order to prepare for these changes we are advised that it will be important for all localities to bear in mind the changes planned and to engage with: - people with autism and their carers - GPs and GP consortia (now Clinical commissioning Groups) as they develop - NHS providers Social care providers: independent and voluntary sector and social enterprises.
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3.0 IMPLEMENTATION PLANNING 3.1 The focus of implementation is expected to be at local level. DH Deputy Regional Directors (DRDs) will be expected to be working with a range of regional and local partners, including the Association of Directors of Social Services, the Strategic Health Authority and wider NHS and social care sector to develop a Regional Action Plan. 3.2 This plan will be expected to help to facilitate peer support and sharing of good practice to speed up implementation of the National Autism Strategy. Local leads will be asked to identify any areas of good practice that can be shared or where peer support services or collaborative approaches at a sub-national level could support local implementation. Some regional partnerships may also have capacity to put in place additional mechanisms to collate information from the local self-assessments.
3.3 The Standard Contract for Mental Health and Learning Disabilities explicitly requires service specifications, and therefore service providers, demonstrate how reasonable adjustments for adults with autism are made.
3.4 Implementing “Fulfilling and rewarding lives’ is issued under section 2 of the Autism Act (2009) to state clearly the responsibilities of local authorities and NHS bodies. NHS Foundation Trusts are specifically mentioned and are expected to take the guidance into account in planning and providing services for adults with autism. This is ‘statutory’ guidance: local authorities and NHS bodies including Foundation Trusts must follow the relevant sections or provide a good reason why they are not: for example by proving we are providing an equivalent or better alternative for example. BUT lack of sufficient resource would not necessarily constitute a good reason.
3.5 This Government has made clear its focus is on outcomes, not process targets, and their ultimate outcome for adults with autism is that: ‘All adults with autism are able to live fulfilling and rewarding lives within a society that accepts and understands them. They can get a diagnosis and access support if they need it, and they can depend on mainstream public services to treat them fairly as individuals, helping them make the most of their talents.’
3.6 This is their long-term goal that requires change across all public services. But this guidance focuses only on health and social care, and provides the next step towards delivering a system that provides personalised care for all adults with autism that reflects their health and care needs, supports carers and encourages strong joint arrangements and local partnerships.
In particular, this guidance sets out how health and social care services can: • improve the way they identify the needs of adults with autism, and • incorporate those identified needs more effectively into local service planning and commissioning, so that adults with autism and their carers are better able to make relevant choices about their care.
4.0 NORFOLK APPROACH 4.1 We have a clear response to the legislation within the Autism Act 2009 and subsequently the National Autism Strategy 2010. Our Joj nt Commissioning Strategy for Learning disability 2010 to 2015 says: • “ There will be local clarity about the responsibility for services and support to people on the autistic spectrum and aspergers so people do
Page 4 of 6
not fall between services.”
• “Following national consultation and publication of the national strategy a revised local strategy will be finalised in partnership with the NHS”
4.2 In Norfolk our approach will continue to try to evaluate progress towards this vision based on the newly provided tangible quality outcomes – visible and measurable indications of whether the vision is being realised locally. In addition we will work with stakeholders to develop local interpretations to ensure that the guidance is best focussed to meet the needs of people with autism in Norfolk based upon our ongoing needs assessment. [Appendix 4]
4.3 The new Government documents identify seven such quality outcomes, which are as applicable at a local level as a national one. These have been developed with a number of partner organisations including the Association of Directors of Social Care and the National Autistic Society. They reflect a wide agreement on key priorities developed through the national consultation which informed the development of the Fulfilling and Rewarding Lives strategy and on draft statutory guidance to secure the delivery of that strategy, as well as discussions with adults with autism, family carers and health and social care professionals.
4.4 These outcomes are also to reflect the priorities and principles set out in the 2 3 Government’s A Vision for Adult Social Care and Equity and Excellence , the vision for the future of the NHS. They also sit firmly alongside the wider outcomes proposed for the NHS, public health and social care set out in the 4 Adult Social Care, Public Health and NHS national outcomes frameworks – in particular reducing health inequalities, promoting personalisation and enhancing quality of life for people with care and support needs, and ensuring a positive experience of care and support.
4.5 All public service delivery is underpinned by the Equality Act 2010, requiring all organisations that provide a public service make reasonable adjustments to services to ensure they are accessible for disabled people. This includes making reasonable adjustments for people with autism.
Potential areas for consideration include: adjustments to premises to take account of hypersensitivities, adjustments to processes, such as scheduling appointments at less busy times, and adjustments to communications, for example by ensuring essential documents and forms are available in accessible formats.
4.6 Strategically we have ensured that two complementary team functions mean that no adult with Autism is refused a service on the grounds of IQ alone: High functioning autism: support for adults with High Functioning Autism and Asperger’s Syndrome is coordinated by the establishment of Asperger Services Norfolk Adults with autism and co-existing learning disabilities/difficulties are referred to the Community Learning Disability teams An individual’s needs can be assessed by professionals with appropriate skills and knowledge.
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5.0 Norfolk Learning Disabilities Self-assessment Framework 5.1 Appendix 5 provides an extract from the validated 2011 Norfolk Learning Disabilities Self-assessment Framework which relates to the overall assessment of progress in 2010/11 with the development across Norfolk of the services for people with autism.
6.0 Asperger’s Services Norfolk 6.1 Appendix 6 provides the 2011 Annual Report on the progress and developments of Asperger’s Services Norfolk during its initial 12 months of operation.
Page 6 of 6 Appendix 1
Extract from Health and Social Care Needs Assessment for Adults in Great Yarmouth and Waveney with Learning Disabilities, Autism or Asperger syndrome, March 2011
5
National and local data
5.1 The general population of Norfolk
NHS Norfolk had a population projection of 766 900 for mid 2010, increasing by around 10% over the next decade with greatest increases among 30 – 34 year olds and 70 - 74 year olds, and with those in their fifties not far behind. .
There are public health issues of smoking, alcohol misuse and obesity . Overall smoking prevalence rate is 19.4%, lower than the England average and has reduced in recent years. There still remains, however, 117 591 smokers. 1 in 5 adults are obese and the number of diabetics is increasing. Prevalence and access to services for people with learning disability, autism or Aspergers will be considered in more detail later.
On average, men and women in NHS Norfolk live longer than in England. Rates of early death from heart disease, stroke and cancer have fallen over the last decade and are lower than the England average. Estimated deaths from smoking in Norfolk are 1400 per year, a rate of 172.2 per 100 000, a good deal lower than the rate of 206.8/100 000 across England.
5.2 Prevalence of learning disabilities and Autism Spectrum Disorder
The following table summarises data for adults in NHS Norfolk and the complete datasets, with projections to 2030 are attached at Appendix 3.
Table 5.1 Summary data: NHS Norfolk Prevalence of adults with learning disabilities Adult population sub Age Approx Number in Approx increase group range Proportion NHS Norfolk over the next 5 years (numbers) Severe LD 18 - 64 0.3% 741 20 Severe or moderate LD 18 - 64 0.6% 2800 100 All categories LD 18 - 64 2.5% 12 500 500
Severe or moderate LD 65 - 85 0.3% 515 50 All categories LD 65 - 85 2% 3820 500
Downs 18 - 64 6/100 000 323 6 Downs 65 - 85 3.6/100 000 7 1 Version 16/05/11
Autistic spectrum 18 - 64 1.8% men 5136 130 disorders (ASD) 0.2% women Source: www.pansi.org.uk (18-64); www.poppi.org.uk (>65)
Of this prevalence estimate of learning disabilities in Norfolk in 2010, of the 21 786 people identified, (the sum of all the categories), 3315 would have severe or moderate learning disability. This would be a slight overestimate for Norfolk, due to our racial mix being different from other parts of the country. Nevertheless, only 2627 were reported as known to social services in 2009/10 across NHS Norfolk and Great Yarmouthi, 79% of the estimate for severe or moderate disability. this suggests that up to 20% of these adults are not known to the authorities. Considering the estimate of all categories of learning disability, those on the social services register represent only slightly more than 0.1% of them.
The estimated population of Norfolk in 2010 with reasonable pronounced Autism or Autistic Spectrum Disorder and aged between 18 and 64 is 5 136, rising to 5 689 by 2030. There is no information about people over the age of 64.
The tables that follow relate to children on the register with social services for learning disability, and can be used to establish the number of people coming through the transition to adulthood over the next five years and beyond.
The register also contains individuals with mild, moderate, severe or profound disabilities in other categories, including locomotion, fine motor, personal care, continence, hearing, vision, communication, behaviour and social integration, physical health and consciousness.
Table 5.2 LD registers for males aged 0-19 by age band and severity for Norfolk, December 2010 Males Age Mild Moderate Severe Profound Total 1 1 2 2 5 2 1 1 3 3 2 6 11 4 3 4 10 4 21 5 11 7 13 3 34 6 19 8 24 6 57 7 22 7 37 10 76 8 26 2 52 4 84 9 20 13 47 12 92 10 25 7 69 10 111 11 33 9 92 8 142 12 28 19 83 10 140 13 30 8 93 12 143 14 31 12 83 14 140 15 41 16 69 21 147 16 35 15 87 10 147 17 27 19 59 22 127 Version 16/05/11
18 2 1 8 20 31 19 6 2 4 12 20 1 1 Grand Total 363 151 836 172 1522
Table 5.2 LD registers for females aged 0-19 by age band and severity for Norfolk, December 2010 Females Age Mild Moderate Severe Profound Total 2 1 1 3 2 1 2 5 4 3 2 2 3 10 5 2 5 5 3 15 6 3 3 14 8 28 7 7 1 23 31 8 11 5 14 9 39 9 10 2 18 6 36 10 8 4 23 6 41
11 6 34 4 44 12 11 7 47 6 71 13 8 3 30 8 49 14 15 1 41 9 66 15 10 4 31 9 54
16 14 6 27 4 51
17 7 4 25 10 46
18 5 2 7
19 3 3
Grand Total 117 48 343 89 597
It is usual to see increases in numbers with age up to mid adolescence, as more people are identified with increasing age.
Table 5.3: LD registers aged 0-19 by gender and district for Norfolk, December 2010 District Female Male Total Breckland 91 239 330 Broadland 93 232 325 Great Yarmouth 37 96 133 King's Lynn and West Norfolk 104 235 339 North Norfolk 84 199 283 Norwich 106 299 405 South Norfolk 75 204 279 Version 16/05/11
Missing data 7 18 25 Total 597 1522 2119
Figure 5.1: LD registers aged 0-19 by gender and district for Norfolk, December 2010
450
405 400
350 339 330 325 Female Male 299 300 Total 283 279
239 250 232 235
199 204 200
Number of children with LD 150 133
104 106 91 93 96 100 84 75
50 37 25 18 7 0 Breckland Broadland Great Yarmouth King's Lynn and North Norfolk Norwich South Norfolk Missing data West Norfolk District
Numerically, highest numbers are in Norwich, and more boys than girls are affected.
Table 5.4: LD registers aged 0-19 by gender and deprivation quintile for Norfolk, December 2010 Deprivation quintile Female Male Total 1 (least deprived) 85 251 336 2 104 264 368 3 123 315 438
4 125 273 398
5 (most deprived) 153 401 554 Missing data 7 18 25 Total 597 1522 2119 Version 16/05/11
The final figure shows higher numbers in areas of higher deprivation.
Figure 5.2: LD registers aged 0-19 by gender and deprivation quintile for Norfolk, December 2010
600 554
500
438
398 401 400 368
336 315 Female 300 Male 273 264 Total 251
Number of children with LD 200 153 123 125 104 100 85
0 1 (least deprived) 2 3 4 5 (most deprived) Deprivation Quintile
5.3 Social care Those people in the below tables shown as receiving services and who were not considered to have critical or substantial needs are likely have been provided with support to prevent them from developing substantial or critical needs, or to prevent a crisis.
Table 5.5: Social care eligibility in 2009/10 for individuals where learning disability is considered primary need Highest Eligibility Aged 18-64 Aged 65+ 1. Critical 1,097 137 2. Substantial 621 65 Version 16/05/11
3. Moderate (Prevention) 55 13 4. Moderate 14 4 5. Low 3 0 Unknown 227 36 Total 2,017 255
Under the FACS guidance relevant in 2009/10, the evaluation of risks to independence undertaken during assessment had to take into account the following factors:
Autonomy and freedom to make choices. In judging needs against this factor a critical need is where there is little or no choice and control over vital aspects of the immediate environment. Substantial needs means there is only partial choice over the vital aspects of the immediate environment. Health and safety including freedom from harm, abuse and neglect, and taking wider issues of housing and community safety into account. In judging needs against this factor, critical needs are where life is threatened, and/or there are significant health problems, and/or there is serious abuse or neglect. Substantial needs means there is some abuse or neglect. The ability to manage personal and other daily routines. In judging needs against this factor, critical needs are where there is an inability to carry out vital personal care or domestic routines. Substantial needs are where the majority of personal care or domestic routines cannot be carried out. Involvement in family and wider community life, including leisure, hobbies, unpaid and paid work, learning, and volunteering. In judging needs against this factor, critical needs are where vital involvement in work, education or learning cannot be sustained; and/or vital social support systems and relationships cannot be sustained; and/or vital family and other social roles and responsibilities cannot be undertaken. Substantial needs are where many social, educational, relationship, family and social roles cannot be undertaken.
In 2009/10 all individuals with learning disabilities receiving services from Norfolk County Council were categorised according to their level of need under each of the above headings. The results tell us something about the nature of needs amongst social care service users in Norfolk and were as follows:
Table 5.6: ‘Autonomy’ needs ratings in 2009/10 for individuals where learning disability is considered primary need
Age Band Total Highest Eligibility 18-64 65+ 1. Critical 540 58 598 2. Substantial 634 56 690 Version 16/05/11
3. Moderate (Prevention) 61 11 72 4. Moderate 16 3 19 5. Low 4 0 4 None Recorded 762 127 889 Total 2,017 255 2,272
Table 5.7: ‘Health and safety’ needs ratings in 2009/10 for individuals where learning disability is considered primary need
Age Band Total Highest Eligibility 18-64 65+ 1. Critical 891 117 1,008 2. Substantial 457 55 512 3. Moderate (Prevention) 55 9 64 4. Moderate 6 1 7 5. Low 0 1 1 None Recorded 608 72 680 Total 2,017 255 2,272
Table 5.8: ‘Managing daily routines’ needs ratings in 2009/10 for individuals where learning disability is considered primary need
Age Band Total Highest Eligibility 18-64 65+ 1. Critical 718 102 820 2. Substantial 660 68 728 3. Moderate (Prevention) 63 12 75 4. Moderate 15 2 17 5. Low 2 0 2 None Recorded 559 71 630 Total 2,017 255 2,272
Table 5.9: ‘Involvement in Family and Wider Life’ needs ratings in 2009/10 for individuals where learning disability is considered primary need
Age Band Total Highest Eligibility 18-64 65+ 1. Critical 527 41 568 2. Substantial 657 59 716 3. Moderate (Prevention) 58 12 70 Version 16/05/11
4. Moderate 14 6 20 5. Low 1 0 1 None Recorded 760 137 897 Total 2,017 255 2,272
Other data drawn from the Referrals and Packages of Care data return can give us an indication of the prevalence of social care needs for people with learning disabilities in Norfolk.
Changes in need levels for social care services over time
Overall we are experiencing an increase in the number of people with learning disabilities using services provided or commissioned by the Council.
In 2004, based on service user numbers and national research, Norfolk County Council undertook an analysis to predict the number of people with learning difficulties requiring services. The table below shows how these predicted figures compare to actual client numbers.
Figure 5.3: Actual growth in learning disabilities-related demand for services compared to predicted growth
LD Clients in Receipt of ASSD Commissioned Services in Norfolk
3000 2627 2557 2500 2387 2401
Predictions 2004 r 2000
LD PFMT Figures 1500
Client Numbe 1000
500
0 2005 2006 2007 2008 2009 2010 2011 2012 Year
Between April 2007 and March 2009, the number of individuals for whom learning disability is considered the primary need, and who received a service commissioned by Norfolk County Council, rose from 2401 to 2557, an increase of 6.5%. In 2009/10 this number rose again to 26271.
1 This figure differs from the total figures in table .5.5 because it includes all professional support. Version 16/05/11
In 2009/10 the Council’s Pooled Fund Management Team undertook a study to examine the causes of the 6.5% growth in service users. 46% of the new service users were aged 18-24 and most of those receiving services for the first time were making the transition from Children’s Services to Adult Social Services.
An examination of individuals on the Transition List and the financial year in which they reach 18 (and in many cases will transfer from Children’s Services to Adult Social Services) is shown below.
Figure 5.4: Predicted transition totals from Children’s Services to Adult Social Services between 2004 and 2012
Total Number of Transition List Clients Reaching 18 by Financial Year
100 92 90 90
80 72 71 70 64 64 60 61 60
50 ber of Clients 40 Num 30
20
10
0 2004-05 2005-06 2006-07 2007-08 2008-09 2009-10 2010-11 2011-12 Year
The increase in young people with learning disabilities turning 18 in 2007/08 and 2008/09 partly explains the 6.5% growth described above but the reasons behind the growth in service users year on year is more complex than simply the number of people coming through transition minus service users who die in year.
The number of people with learning disabilities who are living into older age is increasing year upon year and this means that many individuals are requiring social care service provision over a longer period. 2692 people with a learning disability who are over 65 are known to the Learning Disabilities Care Management Teams and received a service in 2009/10, an increase of 7% on the previous year. This means that more than 10% of Norfolk service users with a Learning Difficulty in 2009/10 were 65 or over.
2 This figure differs from the total figure in table 5.5 because it uses contract data rather than assessment data – and may include some of those people recorded in table 4.1 as “unknown” Version 16/05/11
Figure 5.5: age profile of people with learning disabilities as primary need receiving social care services in Norfolk between 2006 and 2010
Age Profile of LD Clients Receiving a Service 2500 2306 2358 2174 2163
2000
1500
Age Band 18-64 1000 Age Band
Number of Clients of Number 65+
500 269 213 238 251
0 2006/07 2007/08 2008/09 2009/10 Year
This increase in the proportion of people with learning disabilities aged 65+ receiving services is likely to be a trend that will continue and possibly accelerate. The table below shows that there are currently 93 more people with learning disabilities aged 60-64 receiving services than there are aged between 65 and 69. Most of the cohort of service users aged 60-64 can be expected to live to the age of 65. There are also significantly more service users aged 50-54 and 55-59 than aged 65-69 and many of these will live beyond 65. This means a continuing demand and cost pressure on social care commissioned services for people with learning disabilities in the future as these service users age and their care needs become more complex, or their carers become unable to care for them through old age or incapacity.
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Figure 5.6: age profile of people with learning disabilities as primary need receiving social care services in Norfolk 2009/10
Age Bands of LD Service Users 2009/10 450 408 400
350 306 300 258 260 263 250 238 238 208 200 179
Number of Cl i ents 150 115 91 100 63 50
0 18-24 25-29 30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69 70-74 75+ Age Band
Young people making the transition into adult social care services and an increasing number of adults with learning disabilities living into old age and requiring service provision over a longer period explains some of the 6.5% growth in demand for services between 2007 and 2009.
The Pooled Fund Management Team study also showed that a significant number of people entered services because of a decline in their health or behaviour (20%) or because of a desire for greater independence (11%). Others became new service users because they were considered at risk from a friend, family member or associate, because they left school or college, because they moved into Norfolk, because carers were unable to cope or because they needed support with pregnancy, parenting or managing daily tasks.
Finally, a small proportion in the growth can be attributed to the transfer of clients from In House to independent services, data cleansing and the increased complexity of some care packages.
Predictions for future need levels for social care services
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Using predictions from Emerson and Hatton (2008), the Pooled Fund Management team produced estimates for the likely growth in service users with learning disability as the primary need in Norfolk up to 2014.
The minimum predicted growth (based on services being provided to individuals with critical and substantial needs only) is that the number of service users will increase by between 1.1% and 1.7% annually up to 2014. A prediction of growth based on services being provided to individuals with a critical or substantial need and 50% of individuals with a moderate need is suggests an increase of between 2.8% and 3.7% per year could be possible.
Figure 5.7: Predicted growth in service users with learning disability as the primary need up to 2014
Predicted Growth of LD Service Users in Norfolk 2009-2014 3500
3000 Actual Client Numbers (2010 projected)
2500 Lowest Estimate - New Services to 2000 Critical/Substantial Only 1500 Highest Estimate- New Services to Critical/Substantial & 1000 50% Moderate
Number of Service Users of Service Number Trend - Actual Client 500 Numbers
0 2007 2008 2009 2010 2011 2012 2013 2014 Year
5.4 Prison populations
Health needs assessments have been carried out in Wayland, HMP Norwich and Blunderston prisons in recent years; the following information is taken from the Blundeston and Wayland documents;the assessment of HMP Norwich contained no reference to learning disability.
Information from 2008 Blundeston prison needs assessment The Prison Reform Trust ii explored the issue of learning disabilities and learning difficulties in the offender population. It identifies three main groups: those with learning disabilities the wider group who have learning difficulties (which include a range of impairments such as dyslexia and autistic spectrum disorders), and the largest group who have mild/borderline learning difficulties
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The research indicated that about 20-30% of the offender population have some learning difficulties or learning disabilities that will interfere with their ability to cope with the criminal justice system. It suggests that this group of offenders: “are at risk of re-offending because of unidentified needs and consequent lack of support and services are unlikely to benefit from conventional programmes designed to address offending behaviour are targeted by other prisoners when in custody and present numerous difficulties for the staff who work with them, especially when these staff often lack specialist training or are unfamiliar with the challenges of working with this group of people”
Estimated numbers of prisoners with learning disabilities in HMP Blundeston prisons based on the population at April 2008.
Estimate for April 2008 Estimated number seen based on prevalence data by health services in 2007/08
Learning disability 34 3
Borderline learning 128 2 disability Source: Derived from population data supplied by the prison and prevalence data from Mottram
The numbers seen in 2007/08 are extremely low and suggest either a very different population to that identified in Liverpool and/or a level of under-detection and recording
Information from Mental Health Needs Assessment of HMP Wayland, 2008. This report cited research evidence that between two and ten percent of all offenders have learning disabilities and that rates are higher in prisoners who are adult and that 70% of prisoners with LD are male.. An ONS survey had shown that 5 % sentenced men have an IQ below 70 and further research identified a lot of prisoners with borderline learning disability.
The report noted that prisoners with learning disabilities were susceptible to ridicule and bullying and they had poorer health than those without. Prisoners with learning disabilities were at high risk of co morbidity with mental health problems: 88% have depression, but other problems are anxiety, phobias, panic disorders and schizophrenia, which itself is 3 times more prevalent in prisoners with learning disability. Low IQ had a co morbidity with personality disorder and leads to diagnosis of psychotic disorders in prisoners.
Also, while the following figures give us an indication of the numbers of people with learning disabilities eligible for statutory social care support, this cannot be considered a full picture of how many people with learning disabilities there are across Norfolk, or what the full extent of their associated social care needs are. The numbers below relate to individuals receiving social care services, for whom learning disabilities are considered their primary need, and who are eligible for Version 16/05/11 support. There will be other individuals with learning disabilities who were assessed and not considered to have eligible needs and other individuals with learning disabilities who are considered to have other primary areas of need e.g. physical or sensory disability and not included in these figures.
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6
Access to healthcare in Norfolk
NHS Norfolk and Norfolk County Council increasingly commission both health and social care services together. The vast majority of services for clients with learning disabilities or ASD are those in the mainstream, but there are special arrangements to commission specific mental health, learning disabilities including ASD and substance misuse through the Mental Health Delivery Unit of NHS Norfolk, and the Learning Disabilities Local Partnership Board and Pooled Fund for clients with learning disabilities. Services, in turn, work closely with clients.
Views of Clients and Carers are central to planning and a major event in the year is an annual Big Health Check Day in January which this year will be informed by the results of a questionnaire conducted during 2010 exploring people’s views on NHS services such as doctors, dentists, hospitals, specialist health services such as the community learning disability teams and mental health services. NHS Norfolk has a process in place to analyse all complaints involving people with learning disabilities. The Strategy for Carers in Norfolk 2011 – 2014 (NHS Norfolk, NHS Great Yarmouth and Waveney and Norfolk County Council) iii applies to carers of people with learning disabilities.
The Knowledge Management website in Norfolk has easy read material on consent to treatment, the Mental Capacity Act and Bournewood Safeguards and there are mental health community development workers supporting outreach to people from black, minority and ethnic groups.
2627 people with a learning disability received services through the pooled funding arrangements between Norfolk County Council and the NHS in Norfolk in 2009/10 if all professional support is counted. 710 people were in residential care, 14 with nursing, 1895 relied on community based services and 336 received direct payments. 73 (2.78%) people were in social care placements outside the county but opportunities are always being sought to enable them to return to Norfolk. Continuing healthcare is a package of care arranged and funded solely by the NHS to meet physical and/or mental health needs that have arisen because of disability, accident or illness. It can be provided in any setting including but not limited to a care home, hospice or own home. Specialist health services include residential beds, but it is anticipated that the seven remaining clients will be resettled in the community in the current year. There are five specialist respite care beds available in the community, these currently under review. Outreach support is provided in West Norfolk to assist clients remain at home rather than be admitted into hospital. It is planned to extend this service to other parts of the county. There are respite care bed days in East Norfolk. Hertfordshire mental health foundation trust provides 12 assessment and Version 16/05/11 treatment beds. A small number of patients who meet the national definition for specialised services and their needs are met entirely through the NHS.
6.1 Advocacy
It is well established that people should be enabled to make decisions about their health themselves, instead of others doing so on their behalf
‘Putting People First’ has indicated a new focus on advocacy services and is an opportunity to achieve greater co-ordination for advocacy services.
Info awaited on progress in Norfolk
6.2 GP services
Since 2006, the Quality and Outcomes Framework (QOF) points for GPs were allocated for keeping a register of people over the age of 18 with learning disabilities.
Norfolk data from two years later, 2007/8 showed slow initial uptake of this work, for many operational reasons. Hence the Healthcare Co-ordinators working on behalf of NHS Norfolk have worked steadily with local medical practices since this time, and the Direct Enhanced Service has helped practices to provide the significant resource required to carry out health checks that must be offered to people on the registers.
By May 2010, 87% GPs in NHS Norfolk were signed up to the Directly Enhanced Service and 100% of people with a learning disability were on a GP register, 63% of whom had had a health check.
It is recommended that the Healthcare Co-ordinators continue to work with general practices to provide guidance and to improve the consistency and completeness of recording learning disability prevalence.
6.3 Health promotion services
General support to health promotion services, as any other services across health and social care is being reviewed for cost efficiency and effectiveness. It is important that the needs of people with learning disabilities and others with ASD are recognised and prioritised as these reviews take place.
The NHS Norfolk Public Health Directorate has developed a matrix showing health promotion services across a range of aspects of health promotion and the intention is that as many learning disability and ASD clients as possible receive mainstream services with the help as necessary by reasonable adjustments, as set out in the legal framework of the Mental Capacity Act 2005. Services range in nature from targeted, campaign-style events, often in a small geographic area, or to a particular population sub group, to systematic interventions such as the healthcheck service. Some are Version 16/05/11 delivered through the statutory sector and others through third sector organisations. Some projects are supported by grant funding such as from the National Lottery and may be time limited. There is a range of models of provision for Health promotion services that include third sector/social enterprise.
6.3.1 Dietetics services
Dietetics services are provided on behalf of Norfolk Community health and Care NHS Trust. The dietetic service provides a full time dietician to work n partnership with Norfolk Learning Disabilities Service specialist health staff to meet the needs of individuals with learning disabilities who are unable to access mainstream services with reasonable adjustments. Services include joint dysphagia work (see below).
6.3.2 Stop smoking services
Stop smoking services in Norfolk integrate into primary care services for the whole population, but there are no special services dedicated to those with learning disabilities. There is a ‘level three’ service for people who require intensive support, which is available on referral.
Recommendation Increase access to Stop Smoking Services taking into account the reasonable adjustments required to support people with learning disabilities
6.3.3 Services to support alcohol misusers
There are no specific services designed to meet the needs of clients with a learning disability; instead, it is expected that reasonable adjustments should be made;
Information in easy access format is available via the Heron website.
6.3.4 Sexual health services
The Community Learning Disabilities Team has formal links with the Sexual Health Promotion Unit, ensuring individual issues can be raised, as well as wider training and information is available. Specific programmes have or can be run, if commissioned, for example programmes for prisoners who have been sex offenders and these have been very successful in the past. Often individuals with a learning disability are unable to access mainstream services without reasonable adjustments being made.
The group, PAIRs has been responsible for ensuring that information on Heron on this subject area is Easy Access.
Recommendation There is a continued need to build up resources such as specialist DVDs, anatomical models and teaching packs.
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6.3.5 Immunisation and screening programmes
Discussion has begun but currently there is no way of identifying people with a learning disability on the databases used to organise immunisation and screening programmes and hence it is not possible to evaluate effectiveness of these services for people with learning disabilities or others with ASD. It would be expected to see a rise in uptake now that the registers are in place.
Carrying out immunisations requires adjustments to allow the processes to accommodate the special needs of these people, in terms of communication, physical barriers to access. Associated with cancer screening programmes, information leaflets and other information needs to be in easy access format linked to other health promotion material and this is available on Heron.
6.4 Community based health services The Norfolk Learning Disabilities Service (specialist community health services) is currently part of a joint service between Norfolk Community Health and Care NHS Trust and Norfolk County Council known as the Norfolk Learning Disabilities Service. The service is funded and operates via section 75 arrangements and Norfolk County Council currently manages both the pooled fund and the joint services.
The Norfolk Learning Disabilities Service (NLDS) has been registered with the Care Quality Commission under a blanket registration by Norfolk Community Health and Care NHS Trust and by Norfolk County Council, as five separate teams.
Specialist community health staff are employed by Norfolk Community Health and Care NHS Trust and are directly managed by five Joint Team managers who are currently registering with CQC as registered managers.
The current Specialist Community Health Services professional group make up is:
Speech and language therapy Community nursing Care management Physiotherapy Aromatherapy Occupation therapy Psychology Admin Psychiatry (managed and employed by Hertfordshire Parnership NHS Foundation Trust)
6.4.1 Communication
The East of England Strategic health Authority’s draft document ‘Better health’ 2010-11 has recommended that all individuals with a learning disability should Version 16/05/11 have an individual communication assessment and action plan. The NLDS currently provides 2.47 Communication Development Workers which support mainstream services, carers and private providers with developing their awareness of communication needs and methods of delivery to support individuals. This service will be no longer funded from?
6.4.2 The Speech and Language Therapy service
Individuals with learning disabilities should be able to access mainstream services where reasonable adjustments are possible. The Norfolk Learning Disabilities Service specialist community health services provide a service for those individuals who require services that cannot be met by mainstream services with reasonable adjustments. The specialist speech and language therapists work as part of the NLDS multi-disciplinary service. They provide assessment therapeutic intervention and a consultative role with eating, drinking, swallowing difficulties and communication needs.
6.4.3 Dysphagia
There is great demand for these services which currently have an increasing problem delivering timely assessments and delivery of services. A temporary ppost for a Dysphagia Screening Assistant has continued to be funded to help improve delivery of services.
6.4.4 Epilepsy services
People with learning disabilities have a higher risk of having epilepsy than the general population. The prevalence rate of epilepsy amongst people with learning disabilities has been reported between 20%-50%, compared to prevalence rates for the general population of 0.4%-1% (NICE, 2004). The prevalence increases with severity of impairment.
Seizures can be the cause of fractures and soft tissue injuries and both epilepsy and antiepileptic drugs can affect learning and concentration. There is also an increased risk of sudden unexpected death in epilepsy.
The NLDS specialist epilepsy service supports individuals with learning disabilities and epilepsy. They do not provide a separate service but assist people with learning disabilities and their carers to access mainstream services and to manage and understand their condition and medication. Hence there is a link to staff at acute sites on A&E and the wards.
6.4.5 Dental care
Poor dental health is twice as common in people with learning disabilities as in the general population, with higher levels of both tooth decay and gum disease. Good oral health contributes to the overall quality of life of the individual including the ability to eat, speak, socialise and find work. Issues raised by service-users and carers are physical access to dental premises and access to sedation and anaesthetics for dental treatmentiv. Version 16/05/11
Dental services, currently commissioned by both NHS Norfolk and NHS Great Yarmouth and Waveney, will be commissioned nationally in the future. Policy is to ensure mainstream services are suitable and a good choice for people with learning disability, autism and Aspergers, and these services are provided through contracts with family dentists across the county. NHS Direct provides information on the nearest dentist, and where there are difficulties, the PALs service at each PCT is there to help. Where a person’s dental care needs cannot be met by these primary care services, that include booked appointments or drop in style services, referral to the community dental service is possible and this is particularly appropriate for those with more severe needs, whose treatment takes significantly more time and special skills, equipment or techniques are required.
Carers have expressed views that even through dental care may be offered through mainstream services, in some cases there is perception that the check up is given, but further treatment or a referral for further treatment is not offered, even on referral
Recommendation: to work with the profession locally and support national initiatives to encourage better training and understanding, and to work with commissioning teams ensure that local services are accessible to people with learning disability
6.5 Mental health services
In June 2006, only 59% of PCTs commissioned mental health services for young people with learning disabilities v yet it has already been noted that the prevalence of mental health problems is higher than in the general population. One study suggested that 48% of adults under 65 with a learning disability have a mental health problem, though this included behavioural problems; the rate for people aged 65 or over was 69%.
As is the case of people with mental health problems, neuroleptic medication and polypharmacy can result in serious complications including increased confusion, constipation, postural instability, falls, incontinence, weight gain, changes to hormone and body chemistry and movement disorders. Studies have estimated that between 20% and 66% of people with learning disabilities are given psychotropic medication, principally antipsychotics often used as a form of chemical restraint for the social control of troublesome behaviours, rather than to treat mental health problems. Its effectiveness in addressing challenging behaviour is questionable and there are strong arguments for stopping or reducing its use for many people.
Mental healthcare for people with learning disabilities is now part of the wording in the standard NHS contract for mental health services.
Concerns have been raised on the lack of a commissioned diagnostic and assessment service, and post diagnosis support for school age children with ASD (ie aged 5 and over) and that for young people with ADHD, there is lack of Version 16/05/11 appropriate provision, especially psychology input and over prescribing. High thresholds within adult mental health services are reported, a problem especially for those requiring ongoing medication management. There are opinions that children and young people with mild learning disabilities but very challenging behaviour are often excluded from the communityh paediatric provision, meany of whom will not access specialist Child and Adolsecent Mental Health Services (CAMHS).vi
6.6 Secondary health care
Both mental health and learning disability services are now in the standard contract.
Over the last two years, both acute hospitals in NHS Norfolk have recruited learning disability nurses who act as advocates for people with learning disabilities who are admitted to hospital and their carers. A key role for these nurses, in partnership with specialist community health staff is also in establishing training for all hospital staff and encouraging employment of people with learning disabilities in appropriate roles within the secondary care setting; these individuals can do a lot to improve understanding of learning disability issues amongst other staff, patients and the public.
Learning disability has not traditionally been recorded routinely alongside medical conditions on admission and although Hospital Episode Statistics (HES) can be useful in reviewing service utilisation and can be of use when reviewing service need, the data can be limited in that it requires accurate and consistent coding. The data as received by the PCT does not link to whether an individual is on a primary care learning disability register.
The data below (tables 6.1 – 6.6) is from a special collection undertaken by the Norfolk and Norwich University Hospital Trust for January to December 2010: admissions by type, excess bed days, readmissions, planned procedures not carried out and outpatient appointments where the patient did not attend (DNAs). Outpatients and admissions of patients with learning disabilities by month and specialty have also been collected along with those admissions who subsequently died.
The Norfolk and Norwich University Hospital Trust identified 345 people with learning disabilities who were admitted as in patients in 2009; 2.8% of the known population. The true number is expected to be ten times greater if national rates estimated by Mencap are used. A QIPP (quality, innovation, productivity and prevention) includes a range of initiatives to reduce people who ‘did not arrive’ due to lack of preparation before admission, procedures not going ahead due to lack of reasonable adjustments, poor discharge planning leading to unnecessary readmissions and inability to transfer key information electronically from GPs to acute hospitals.
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Table 6.1 Admissions to NNUHT by type, 2010 Type of admission Learning disability diagnosis Number Daycase Developmental disorder of scholastic 73 skills Mild learning disability 1 Patient alert – learning disability 39 Elective in patient Developmental disorder of scholastic 63 skills Patient alert – learning disability 20 Profound Learning Disability 1 Severe Learning Disability 7 Emergency Developmental disorder of scholastic 364 skills Mild learning disability 1 Patient alert – learning disability 66 Severe Learning Disability 8 total 645
Table 6.2 Admissions by specialty, 2010 specialty Number General Medicine 156 Trauma and Orthopaedics 67 General surgery 52 Nephrology 33 Neurology 28 Urology 20 Gastroenterology 19 Clinical Oncology 19 Obstetrics 16 Gynaecology 14 Paediatrics 10 Cardiology 8 Respiratory medicine 5 Midwife episode 4 ENT 3 Dermatology 3 Opthalmology 2 Oral Surgery 2 Plastic Surgery 2 Thoracic surgery 1
Table 6.3 Excess bed days by type, 2010 Type of admission Learning disability diagnosis Adms Excess Bed days Elective in patient Developmental disorder of scholastic 3 9 skills Emergency Developmental disorder of scholastic 19 274 skills Patient alert – learning disability 1 54 total 23 313
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Table 6.4 Readmissions by type, 2010 Type of admission Learning disability diagnosis Readmissions Elective in patient Developmental disorder of scholastic 6 skills Emergency Severe Learning Disability 4 Developmental disorder of scholastic 54 skills total 74
Table 6.5 Admissions who died by specialty, 2010 specialty Learning disability diagnosis total General surgery Developmental disorder of scholastic skills 3 Trauma and orthopaedics Developmental disorder of scholastic skills 2 Opthalmology Developmental disorder of scholastic skills 1 General medicine Developmental disorder of scholastic skills 8 Patient alert – learning disability 4 Paediatrics Developmental disorder of scholastic skills 2 Clinical oncology Developmental disorder of scholastic skills 2 total 22
Table 6.6 Outpatient attendances by specialty, 2010 specialty Number Trauma and orthopaedics 74 Opthalmology 68 Allied health Professional episode 55 General surgery 50 Cardiology 36 Oral surgery 33 Clinical oncology 29 Plastic surgery 24 Urology 24 ENT 24 Plastic surgery 24 Neurology 21 Obstetrics 16 Diabetic medicine 15 Anaesthetics 15 Audiological medicine 9 Dermatology 8 Respiratory medicine 6 Endocrinology 5 Gastroenterology 5 Thoracic surgery 4 Rheumatology 4 Audiology 4 Paediatric Endocrinology 4 Paediatric Surgery 3 Gynaecology 3 Paediatric Gastroenterology 3 Paediatrics 2 Paediatric neurology 2 Orthodontics 1 Clinical Neurophysiology 1 Nephrology 1 Clinical physiology 1 Version 16/05/11
Geriatric medicine 1 Total 551 (+ Did not attend 49)
It is recommended that the work of the learning disability nurses in secondary care continues to get recognition and support, that commissioners continue to work with service providers to ensure robust data is routinely collected through services so that a better understanding of the needs of people with learning disability for NHS secondary and community care service is gained and that in order to ensure that people with learning disability have access to mainstream services and treatments, it is recommended that the PCT uses Equality Impact Assessments to identify negative impacts.
6.7 Dementia services
NHS Norfolk has a strategy to develop dementia services locally until 2014 that in it, the needs of people with learning disability are taken account. The national report on dementia in people with learning disabilities recommends assessment of every adult with Down’s syndrome at the age of 30 to establish a baseline against which to compare future suspected changes in functioning and considering screening all adults with Down’s syndrome over 40 regularly because of the increased risk of dementia and the prevalence of undetected treatable illnesses.
6.8 Health services for people with Autistic Spectrum Disorder People with autistic spectrum disorder access specialist services according to need, and have access to mainstream services with support through specialist teams as required.
6.9 Health services for people with Asperger Syndrome
There are no separate services; needs are identified separately. However, during 2010 a dedicated service was established to help people to access a diagnosis. This is provided through Asperger East Anglia and150 people are seen every month. The service directs people to clinical psychology in partnership with the NHS and social services. A GP can also make a referral directly to the clinical psychologist. On diagnosis, Asperger East Anglia can help direct clients to other services such as benefit support, as needed. In the past it has been recognised as very difficult for someone without a diagnosis to gain Version 16/05/11 access to specialised health services, where as people diagnosed in childhood are already known to services by the time adulthood is reached.
6.10 Health services for people with ADHD
ADHD is a condition usually picked up in childhood and a separate needs assessment locally has recently been undertaken through CAMHS which identifies issues related to a continuing service for adolescents once passed through transition to adults.
6.11 Health services for people with challenging behaviour
It is recommendedvii that nationally co ordinated work should be developed to support local commissioners to implement existing guidance, including personalised support and capacity to prevent and intervene earlier with challenging behaviour and mental health problems.
6.12 Special packages of care
A small number of individuals with severe needs, including some with autism, are funded with a special package of care. The lead agency may either be learning disabilities services or mental health services (sometimes low secure) and for new cases this can lead to difficulties in establishing which service should be the lead. A small proportion of these cases is under care of the Maudesley Hospital, London.
Recommendation: if a wider range of support services was available in the community, some of these people would not need a special package.
6.13 Health services in prisons for people with learning disability
HMP Blundeston The table below is a summary of visiting/inreach health services at HMP Blundeston in 2008. Service Provider Frequency Mental health inreach nurse Norfolk & Waveney Mental Health 1 full time (and 1 f/t vacancy) Foundation NHS Trust Source: HMP Blundeston
The Mental Health in reach team (that works closely with the LD teams) has expanded since this report was written and they have a protocol with the LD teams such that if a prisoner is deemed to need an LD assessment or has a co- morbidity, the LD team can see and assess. So far this seems to be successful. There are plans to begin ‘screening on reception’ using a screening tooI promoted through the Region, so that once any prisoner comes into the prison Version 16/05/11 as part of their checks they are screened for LD and that way their needs can be better catered for including joint assessment with MH teams if necessary.
Wayland Prison Screening for learning disability at reception was not taking place at Wayland Prison at the time the needs assessment report was written; hence learning disabilities were under reported. It was noted that CSIP had published a tool in 2007viii, ten questions at reception (ie screening) and also that the Department of Health had published in 2005, a pathway to a learning disabilities specialist via a mental health assessment triage. However, this also was not available at this prison at the time. It was further noted that sex offenders have a high prevalence of learning disabilities hence treatment programmes need to be accessible. Staff needed to be trained in order to make appropriate links with other agencies in anticipation of release of prisoners with learning disabilities.
6.14 Establishing an offender mental health pathway An offender mental health pathway consistent with the Department of Health and Lord Bradley Report requirements is currently being established across Norfolk. Specific problems relating to offenders with learning disability include limited capacity to identify offenders with learning disability at the point of entry to the prisons and limited capacity, skills and knowledge amongst custody and discipline staff, or among primary and secondary mental health providers. Services are being reviewed, with an emphasis on the requirement for appropriate training and skill mix. Roles of particular importance include the (pre prison) criminal justice team and the secondary care mental health in reach team. Further work on through care and pre release, prison transfers and aftercare is in progress. The work is being overseen by the Prison Health Partnership Board. Version 16/05/11
7
Access to social care in Norfolk
7.1 How people with learning disabilities access social care services
The graph below shows the different types of intervention carried out by Norfolk County Council’s Community Learning Disabilities teams in 2009/10. In contrast to national trends, a high percentage of service users are being supported in the community.
Figure 7.1: Social care service users with learning disabilities as primary need and the type of social care they received in 2009/10
LD Clients by Care Type 2009-10
3000 2627 2500
2000 1895
1500 1500
1000 718
500 336 14 0 People with LD Residential Nursing Community Daycare Direct Payments Based Services
73 (2.78%) of these people are in social care placements outside Norfolk. It is an aim that all people in out of county social care placements have an annual review and opportunities for them to return to Norfolk have been explored. The majority have long standing social networks in their out of county localities and choose to remain in their current placements.
In Norfolk all requests for new social care packages and changes to existing care packages for people with learning disabilities are scrutinised closely and have to be agreed by a panel of experienced professionals. There are two panels: one for services to be provided to all young people coming into the service (Transition panel) and another panel for all other service requests (Adult Panel).
This ensures that a fair and consistent decision-making process is applied across the County and provides a checkpoint for assessing value for money.
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Analysis of the decisions taken by these panels provides a useful insight into how demand for services is changing and where gaps in provision may be appearing.
7.2 Young people making the transition to adult services
Detailed research was undertaken in 2009, which examined the decisions made by the Transition Panel in 2007/08 and 2008/09. The study concluded the following:
Requests for services increased by 43.45% compared with the previous year Packages of care agreed increased by 21.89% compared with the previous year The greatest demand was for day care, residential, supported living and residential respite. Panel expenditure grew by 43.19% The most striking cost pressures arose from a huge increase in expensive care packages for residential and supported living. A considerable cost pressure arose from packages for residential colleges. A number of expensive out of county placements have contributed to increased volume and cost of services.
The graph below shows the numbers of requests for care made and agreed at Transition Panel in 2007/08 and 2008/09 across the different care types and shows the areas of highest demand.
Since the study in 2009, the numbers of young people coming into the service through transition has shown a small drop, in line with Emmerson and Hatton’s national predictions. The future growth is now expected to stabilise and then grow gradually over the next 3 years.
There is evidence to suggest a significant influx of out of county placements, particularly from the London Boroughs, into residential provision that adds to the demands placed upon health and social care services.
7.3 Changing demand for adult services
In 2008 analysis was undertaken of the 2005/06 and 2006/07 Adult Panel data by the Partnership Fund Management Team and this suggested that service users requiring a change to their care package are increasing in number and cost. It was suggested that contributory factors were likely to be:
an ageing population - as people get older they often require more care and health support increasing provider prices Version 16/05/11
the cost implications of Valuing People - residential and in-house day care are being replaced by more expensive supported living and community day opportunities
Further detailed research was undertaken in 2009, which examined the decisions made by the Adult Panel in 2007/08 and 2008/09. The study concluded the following:
Requests for services increased by 47.5% compared with the previous year Packages of care agreed increased by 31.9% compared with the previous year Panel expenditure only grew by 3.57% (including a one off re-settlement of people from Burlingham House) The increase in the amount of new packages agreed was offset by reductions in the average extra cost of each residential, supported living and nursing package The most striking cost pressures arose from a huge increase in requests agreed for the expensive care packages of residential and supported living The greatest demand was for daycare, residential and supported living.
7.4 The Ethnicity of People with Learning Disabilities in Social Care Services
The vast majority of people with learning disabilities receiving social care services are described as White British – in 2009/10 2180 out of 2270, or 96% of the total. Of the remaining:
Around 50, or 2.2% are described as “White Other” Around 10 (0.4%) are of mixed race Around 5 (0.2%) are Asian or Asian British Around 5 (0.2%) are Black or Black British Around 5 (0.2%) are Chinese or are from another ethnic group Around 25 (1.1 %) don’t have their ethnicity recorded, either because they have refused to disclose it, or because the information has not been recorded.
(source: 2009/10 RAP Table P1 for Norfolk at www.nascis.ic.nhs.ukNote, some figures may not add up due to rounding applied by Nascis)
These figures are not representative of the population in Norfolk as a whole, and it appears that people from ethnicities other than White British are under- represented within services for people with learning disabilities. For example in the population as a whole, around 0.6% are “White Other”, 1% are Mixed and 0.8 are Black or Black British. We must be careful not to draw overly simplistic conclusions from this – a quick comparison of these numbers does not account for differences in the number of people of specific ethnicities in Version 16/05/11
each age group, possible informal caring arrangements within some communities, and the demographic characteristics of the migrant working population. Nevertheless this may be an area for further investigation in the future.
7.5 How access to social care services in Norfolk is changing
National government policy and local policy decisions mean that the way Norfolk County Council operates is changing and this will have an impact on how people with learning disabilities access services and the type of care they receive.
One of the most important changes is the move to giving all people with social care needs a choice about the support they receive through self directed support – for example direct payments and personal budgets. This is not a new concept, but will accelerate: it is now policy in Norfolk that all service users will access services through self directed support from now on. This means that, in arranging care, people will be able to choose between traditional social care services (day care, domiciliary care etc.) and other more flexible kinds of support – for example employing a personal assistant, or going to clubs or events. This will inevitably make the market for social care services more diverse, but also comes with some risks, not least the sustainability of traditional service models.
In 2009/10, 305 people with learning difficulties accessed services through self directed support, out of a total of 2270 service users – so 13.4% of learning difficulties service users. Figures for the first three quarters (April- December) of 2010/11 suggest this has gone up to 366 service users out of a total of 2214 – so 16.5% of service users. It is likely that the rate of take up will accelerate further in light of procedure and practice changes in the next year.
In response to the drive for greater choice, national policy shifts and increasing cost pressures, in 2010 the Council agreed for itself a new core role, which will see an increased focus on commissioning from independent providers and a reduction in in-house provided services. Its new priorities will be to act as a safety net for vulnerable people, help local groups to develop community support and act as a signpost to the services and information that people need.
In order to make the switch to this new core role, the Council agreed a number of changes through its budget decision-making process for 2011/12. The following are most likely to impact on how people with learning disabilities access social care services in Norfolk:
Re-design of the assessment process which will see a shift towards a ‘self-service’ approach, where this is appropriate Version 16/05/11
Re-design of day services provision – these will no longer be run by the Council and service users will pay for the services they select out of individual budgets Service users will be asked to use personal budgets to pay for their transport to day care A reduction in specialist advice A reduction in the scale and capacity of some learning disability services which includes advocacy and advice and support for partnership working A reduction in spending on prevention services including Supporting People A review of charging for social care services
7.6 The views of people with learning disabilities and implications for future social care
The consultation that preceded the budget announcements outlined in 7.5, the ‘Big Conversation’, provided people with learning disabilities in Norfolk with an opportunity to express their views about local social care services and the changes listed above. Easy Read questionnaires were received from more than 100 people with learning disabilities and a further 19 carers in addition to representations from support staff and organisations with a specialist interest in services for people with learning disabilities. Many service users and carers also expressed their views at consultation events across the County.
The main responses that should be noted to frame our understanding of the needs and preferences of social care service users in Norfolk are as follows:
Day services and transport
Day services are essential to help carers cope and to prevent social isolation and a range of choice in provision should be available The Council should provide help and advice to people looking to find their own day care Many value existing day services and are concerned that there is not enough independent provision available to fill the gaps left by the Council that is of the same quality It was suggested that market development is needed to develop alternative support arrangements within the non statutory sector There are concerns that local independent providers do not have the know-how to manage people with high levels of need and that they have a high turnover of carers There are concerns that carers who rely on the respite provided through the current arrangements will not be able to meet additional support needs There are concerns that a lack of personal transport may prevent some individuals from accessing new services Version 16/05/11
Some felt that extra transport costs would mean some service users would simply not be able to afford to attend day services and this could lead to a deterioration in general health and well-being If service users did stop attending day services because of extra transport costs it was felt that the drop in demand could lead to an overall cut in provision locally which would impact on service user choice It was pointed out that additional transport costs will impact more severely on service users in rural areas who have to travel further distances There are concerns that if service users have to have day care from their residential service this will be detrimental to personal growth There are concerns that value added service provided by council day services like monitoring service users’ level of care, diet, health, personal well-being and mental health may not be continued by independent providers
Personal budgets and self assessment
There are concerns that vulnerable people will not be able to manage personal budgets There are concerns that service users and carers will not be able to identify the real level of their needs and will not cope with a move to self assessment District councils suggested that self assessment could lead to greater demand for Disabled Facility Grant if service users over specify their needs There are concerns that personal budgets will not cover both transport and care service costs
Specialist advice
There are concerns about a loss of specialist advice and the impact of this in the longer term – the loss of support in maintaining independence could lead to needs becoming more severe sooner There are concerns that a cut in grants for smaller voluntary services could lead to a loss of support valued by service users because it is often more human, less distant and more in touch with users Concerns that the reduction would lead to a third rate service for those most in need of expert assistance and increased pressure on district council advice services One respondent requested protection for specialist housing work for people with Learning Disabilities There were suggestions that day centre staff should pick up some specialist advice roles
Reduced scale and capacity of some Learning Disability services and prevention services
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Those with the greatest needs should be looked after Some respondents expressed a view that services currently provided through the Learning Difficulties Development Fund (LDDF) are not producing outcomes and could be removed There are concerns about the future of voluntary services that the LDDF grants support and it was felt there are not alternative providers who could meet any gaps in provision Many respondents felt that people with learning disabilities need support and that there is growing demand which is at risk of going unmet Fears that the loss of services may push many carers over the edge There are a concerns that a reduction in preventative services may lead to a loss of independence and an increase in those requiring critical services A loss of social care prevention services could impact on demand for NHS services A removal of Supporting People funding may lead to increased demand for district council homelessness support and temporary accommodation services
Review of charges for social care services
There are concerns that charging may lead some to go without services they need and this could impact on their quality of life
7.7 Access for people with learning disabilities who are not eligible for statutory social care support
The eligibility framework enables councils to prioritise individual need but they still retain responsibilities for people who do not meet the eligibility threshold or who are funding their own care. Many of these individuals will still need and expect adequate signposting to alternative sources of support.
Norfolk County council is currently working through a change programme to deliver improved universal services to all people with social care needs, regardless of whether or not they are considered to have eligible needs. This change programme will introduce self-service assessment and a ‘Citizen’s Portal’ to assist service users with self-directed support planning.
Access options for people with learning disabilities in Norfolk include:
Published information including a full care directory Web based information including information on social networking sites Face to face advice through Council@your library and Joint Visiting Teams Person-centred café drop in events offering advice, support and information including about personal budgets Version 16/05/11
Care Connect - a single route into Adult Social Services providing referrals and assessments, advice, information, access to the Emergency Duty Team, re-enablement and Blue Badge services. Self service (online, telephony) e.g. faster self assessment for simple equipment and adaptations Advocacy services in conjunction with the Norfolk Coalition of Disabled People and with Age Concern.
Survey information suggests that there are some areas where universal services need to improve.
In the Carers’ survey 2009/10 27.1% of carers caring for someone receiving a Direct Payment reported finding information about support, services and benefits “fairly” or “very” difficult to find, compared to only 14.9% of carers caring for someone with no Direct Payment.
21.2% of 18-64 year old carers said they had found it “fairly” or “very” difficult to find advice or information about support, services or benefits in the last 12 months, compared to 15.2% of 65-74 year olds and only 11.5% of 75-84 year olds.
A new membership scheme called ‘Your Voice’ has been developed for people willing to share their views and experiences to help develop health, social care and housing support services in Norfolk. This will help with planning and creating services, checking they are meeting needs and that people understand what services are available.
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8
Support for carers
Much of the support for people with learning disabilities is delivered by family carers.
‘Valuing People’ recognises that caring for a family member with a learning disability may be a life-long commitment and one of the objectives is to increase the help and support carers receive from all local agencies in order to fulfil their family and caring roles effectively.
The Strategy for Carers in Norfolk 2011 – 2014 (NHS Norfolk, NHS Great Yarmouth and Waveney and Norfolk County Council) recognises this important role and the developments it describes aims to be of benefit to carers of people in this group. Links are made to related local strategies including Parent Carers of children with disabilities, the Norfolk Drug and Alcohol Partnership Family and Friends Strategy and the Norfolk and Waveney Mental Health Partnership Carers Strategy. Health facilitators, who work to improve the health of people in Norfolk with learning disabilities have a remit to co ordinate support and access to services for carers when health needs are high.ix
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9
Conclusion and topics where further information is needed
9.1 Conclusion Understanding the prevalence of people with learning disability, autism and Asperger syndrome and how this translates into need is complex.
Across all tiers of service provision, many cross-cutting themes have been identified by health professionals, voluntary organisations and service-users.
A key theme is that reasonable adjustments are made, and there is a shared goal of access to preventive, general and specialised health services in community acute and custodial settings.
There is much now written in policy to encourage; the challenge locally is to make sure changes can be put in place, building on and supporting the good work that is already happening. Version 16/05/11
9.2 Topics where further information is needed
The following areas have been identified between health and social services colleagues as topics where there is not enough information for service planning:
Transition: analysis by age and types of need/complex needs
Autism, complex needs, challenging behaviour and multiple needs
ADHD and prescribing issues
Parents with LD
People with older carers
Housing needs by locality
Qualitative data: views of people
Take up of personal budgets and types of services people would like to see commissioned
Support that carers want and how it differs from what is currently available
Liaison with the county psychologist to gain view on met and unmet needs locally
Epilepsy
Dementia
Hate crime
It is recommended that this work is ongoing through 2011, jointly through the JSNA process.
i Joint Commissioining Strategy Services for people with Learning Disabilities 2010 – 2015 Norfolk County Council, NHS Norfolk and NHS Great Yarmouth and Waveney ii Loucks N. ‘No one knows – the prevalence and associated needs of offenders with learning disabilities and learning difficulties’. Prison Reform Trust 2007. iii The Strategy for Carers in Norfolk 2011 – 2014, Carers Council for Norfolk, NHS Norfolk, NHS Great Yarmouth and Waveney and Norfolk County Council. iv Valuing people’s oral health: A good practice guide for improving the oral health of disabled children and adults, DH 2007e v Wright, B. ‘Services for children with learning disabilities’, Psychiatric Bulletin (2008) 32:81-84 vi Children and Young Poeople with Mental Health Problems in Norfolk – CAMHS needs assessment, November 2010. Version 16/05/11
vii Developing better commissioning for individuals with behaviour that challenges services – a scoping exercise. Tizard, University of Kent. viii Bett N and Zammit B. Positive Practice, Positive Outcomes: A handbook for professionals in the Criminal Justice System working with Offenders with Learning Disabilities. 2007, Care Services Improvement Partnerhsip (CSIP) p 1 – 36. ix Joint Commissioning Strategy – Services for people with Learning Disabilities 2010 - 2015 Norfolk County Council, NHS Norfolk and NHS Great Yarmouth and Waveney (Extract) 2011 Norfolk Learning Disabilities Health Self-assessment Framework Appendix 2
(1) (2) (3) (4) (5) Top Targets and Key Good things happening Where things need to get How do we score? One thing we want to be better in 12 months Objectives better R/A/G (Key priority)
/ /
4.7 PCTs have Norfolk Aspergers Service has been jointly Comprehensive integrated Development with all stakeholders and agreed with local developed by NHS Norfolk and Norfolk CC Autistic Spectrum Disorder publication of whole system Autistic Spectrum partner agencies with full stakeholder engagement and is now commissioning strategy to Disorder commissioning strategy. a long term ‘whole set up and running in support of existing be developed and published system’ strategy Learning Disability and Mental Health and implemented with fullest to address the services. This is jointly funded by NHS and possible stakeholders’’ needs of people social care. engagement including with autism people with autism spectrum, which 2010/11 JSNA for Learning Disabilities has spectrum and/or their includes been extended and specifically included the advocates from the outset of reference to needs and requirements of people with developing further a fully adults and young autism spectrum disorders. integrated Norfolk Strategy. people with Under the national Guidelines: Implementing learning ‘Fulfilling and rewarding lives’ – the Autism disabilities, and strategy issued by DoH in December 2010 also to young Norfolk Adult Community Services will lead people with to development of a Norfolk Autism Strategy learning with full partnership across NHWS Norfolk disabilities and NHS GY&W and with full stakeholder approaching engagement. transition to adulthood NNUH (as a Foundation Trust) has recognised its separate responsibility under the Guidelines to take the Guidance into account in planning and providing services for adults with Autism. It has developed a draft Action plan for 2011/12
Agenda item:
APPENDIX 3
Asperger Service Norfolk: Annual Report 2011
The Asperger Service Norfolk was set up following the passing of The Autism Act 2009. It also responded to local pressures from stakeholders including parents, carers, the registered charity Asperger East Anglia and local MPs.
Fulfilling and Rewarding Lives
Following The Autism Act 2009 a strategy on services for adults with autism, Fulfilling and Rewarding Lives, was published in March 2010. The government’s vision for service delivery was set out in this strategy: ‘All adults with autism are able to live fulfilling and rewarding lives within a society that accepts and understands them. They can get a diagnosis and access support if they need it, and they can depend on mainstream public services to treat them fairly as individuals, helping them make the most of their talents.’
Shortly after, statutory guidance for local authorities and local health bodies entitled Implementing “Fulfilling and rewarding lives” was published by the Secretary of State for Health on 17 December, 2010. The guidance states that adults with autism should be able to enjoy an improved quality of life, increased personal autonomy and greater inclusion in every aspect of society. The strategy focuses on five core areas of activity:
Increasing awareness and understanding of autism among frontline professionals
Developing a clear, consistent pathway for diagnosis followed by the offer of a personalised needs assessment
Improving access to the services and support which adults with autism need to live independently within the community
Helping adults with autism into work
Enabling local partners to plan and develop appropriate services for adults with autism to meet identified needs and priorities.
Asperger Service Norfolk
Asperger Service Norfolk has structured the service such that delivery is consistent with the above guidance. We either meet or have clear plans to meet the recommendations made as part of the statutory guidance.
The service is advised by a steering group which includes a range of stakeholders: Health Commissioners (NHS Norfolk and Great Yarmouth and Waveney); representatives from the joint Learning Disability Service; a representative from Norfolk and Waveney Mental Health; members of Adult Services Asperger East Anglia; a member of Autism Anglia MP’s; Parents, Carers and a link with people who have Asperger syndrome.
The service started with a three month trial in January 2010. Successful performance was followed by recruitment to two substantive professional posts (a psychologist and a social worker).In addition a service level agreement between Norfolk County Council and Asperger East Anglia for support workers and a carer support post was signed.
The partners in the service are the Norfolk County Council Adult Social Care; NHS Norfolk; Great Yarmouth and Waveney NHS Trust; and Asperger East Anglia. The service Lead is Dr Penny Morgan, Norfolk Learning Disability Service, Norfolk Community Health and Care NHS Trust.
Current service
The service is based in Norwich and covers the county of Norfolk. Recent statistics indicate a population of approx 2500 to 2900 people with Asperger syndrome in Norfolk. Details relating to referral, diagnosis and case load can be seen at Appendix 1.
Asperger East Anglia provide a gateway and administration service. An open referral policy is operated, with referrals from GPs, Mental Health Link workers, Learning Disability Team staff, social workers and people with AS themselves. As noted above, pathways have been developed for diagnosis, as well as treatment and life planning. Initial screening is undertaken by the team support workers via interview and screening tests. Outcomes are negotiated with the client, and following discussion with the team’s psychologist and social worker pathways are agreed.
Following diagnosis (or on referral if previously diagnosed) the client and team member work together to prepare a plan that can be used as the basis for future work. This plan may be used to form the basis for a personal budget request; or it may indicate specific therapeutic intervention. The client is encouraged to formulate realistic and achievable goals and the team then work jointly with the client to secure appropriate employment, education, or support from other agencies.
Post diagnosis we offer information and support workshops for clients and (separately) for parents and carers. The service makes a positive contribution to individual’s lives by providing timely support and a skilled and knowledgeable team of workers who are able to understand the specific problems faced by people with AS, HFA and the systems surrounding them.
Clients requiring specialist forensic or benefits advocacy are supported and signposted to other appropriate services. Meanwhile the team provide support, information, and advocacy to client’s parents, carers and other medical or social services professionals who are living or working with them.
The team provide individual advice and support for parents, carers and partners of adults with Asperger syndrome, by means of telephone, text, e-mail, as well as home or office visits and attendance with carers at meetings, Tribunals, Court, prison and police stations. Informal workshops and Information days are an opportunity to provide information and share concerns.
Raising Awareness
At present, Asperger East Anglia (AEA) are continuing to provide awareness training to a range of organisations. ASN recognises the value of this training and seeks to build on the frameworks created. Asperger Service Norfolk offer consultation and advice to other agencies and professionals who may be working with individuals with AS or HFA. Asperger Service Norfolk staff members are also encouraged to participate in specialist education and training. Opportunities for sharing new developments, learning experiences and research findings, are scheduled into regular team meetings. Asperger Service Norfolk have planned a rolling programme of presentations to external services and agencies, including GPs, Mental Health teams and Children’s Services to raise awareness of our team, the services provided and referral process. Where transition to adult Asperger services is appropriate, the team will work closely with referring agencies and professionals involved to facilitate a smooth transition.
Pathway for Assessment
“Fulfilling and rewarding lives” states that:
On receiving a diagnosis of an autistic spectrum condition, adults should be able to access a community care assessment and carers, a carers assessment.
Services should put in place a clear route through which a person can receive a diagnosis and get a community care assessment.
Asperger Service Norfolk offer diagnostic assessment and have developed a pathway with a clear route through which individuals can receive a diagnosis. The pathway also identifies points at which community care and carers’ assessments may be triggered. These may be conducted in- house, or by the referring agency. When being given a positive diagnosis, individuals are advised that they may request a community care assessment and that their carers also have the right to an assessment of their needs. The guidance also states that relevant local organisations such as social care teams understand the pathway to diagnosis. Asperger Service Norfolk are undertaking a programme of presentations to local services informing them of the referral process for diagnostic assessment and the services and support that the team can offer.
The strategy document recommends that relevant information be provided to individuals receiving a diagnosis of an autistic spectrum condition, and their families or carers, to help them understand the condition and access local support.
At the point of diagnosis, individuals are given relevant information about Asperger Syndrome or Higher Functioning Autism as well as details of support and services that the team can provide. Asperger Service Norfolk (ASN) are offering specific post diagnosis sessions across the county for both individuals and their families or carers. These sessions include information about Asperger Syndrome and Higher Functioning Autism as well as addressing psychological responses to receiving a diagnosis. At these sessions staff describe the services and support that the team can provide as well as offering opportunities to ask questions. Where appropriate, additional post- diagnostic support is provided to individuals and families or carers.
Improving access to services and support
The team support individuals, and families, to access appropriate community services and support. This may be through advocacy or liaising with other agencies, such as housing, benefits or health. Support and advice may also be provided to services and external agencies to assist them to make appropriate adjustments to better meet the needs of individuals with Asperger Syndrome. Where eligible needs are identified under the Community Care Act, Asperger Service Norfolk will work alongside existing agencies to ensure that these are met in a way that best meets the needs of the person with Asperger Syndrome. Adults with Asperger Syndrome, or their carers, can visit or contact the team to access advice and support with some of the day-to-day issues that can present a challenge for someone with an autistic spectrum condition. This might include dealing with budgeting, official letters, housing, communicating with health professionals etc.
Helping adults with autism into work
The team work with individuals with Asperger Syndrome to help them identify their strengths, weaknesses and personal preference to put together a Life Plan. This may include plans to maintain or start a job. Team members have skills and experience to support those in work to maintain their roles and can also work with employers if called upon to do so. Adults with Asperger Syndrome can be supported to find work or training and can also receive help negotiating the complexities of the benefits system.
Planning and developing services
Asperger Service Norfolk endeavour to keep key stakeholders and commissioners informed of the development of the service and progress of the work undertaken. This includes formal reports and audit information as well as feedback through steering group and other relevant meetings such as the County Council’s Heath Overview and Scrutiny Committee. Best practice shows that where outcomes for adults with an autistic spectrum condition have improved this has been as a result of the ‘development of local teams dedicated to supporting adults with autism, from diagnosis through to health management and help with day-to-day living’. These approaches have proved to be cost-effective because they ‘provide the integrated support needed to help adults with autism be economically included and reduce the likelihood of them falling into crisis – requiring costly and complex mental health interventions or coming into contact with the criminal justice system’. (Fulfilling and rewarding lives) Asperger Service Norfolk are aware of the risk that individuals with Asperger syndrome can ‘fall through the gap’ between learning disability and mental health teams and work closely with these services to ensure that appropriate support is provided. This work is undertaken in partnership with Asperger East Anglia as well as working alongside individuals, families, other services and agencies.
Case Studies
Below are some anonymised examples of the teams work.
Case 1 ‘D’
D is a young man aged 21 and was referred to Asperger Service Norfolk by his leaving care team. D has been looked after by social services since he was 8 years old and had some very challenging behaviour and would occasionally have violent outbursts at times of stress and frustration. Although D had been living independently he continued to have problems with maintaining his independence and reported mental health problems (anxiety and depression). He was clinically obese. The leaving care team were particularly concerned about the risk of an outburst of frustration leading to D losing his tenancy, or even contact with the police. Recognising that D may have some underlying problems aside from his mental health his social worker asked Asperger Service to assess D for Aspergers syndrome. This resulted in a positive diagnosis for Aspergers syndrome and borderline learning disability. As part of his assessment for Aspergers, D was also seen by a social worker who was able to identify eligible needs for social services and make the appropriate referral for services. D was offered a commissioned package of care via the Learning Disability services and ASN worked with D to help him understand his condition and begin to manage his anger more appropriately. D has developed his life plan and feels much more confident about his future.
Case 2 R
R is a 45 year old male who has had lifelong problems with his mental health and been treated by his GP for depression and anxiety with medication and referred for therapy. R’s response to both of these approaches had not made much improvement to his emotional wellbeing which has been exacerbated by long term unemployment issues. Despite efforts from his GP to help R with his difficulties R continued to have problems with his depression and anxiety and would regularly report his emotional distress to his GP. R was eventually referred to Asperger service and seen by a support worker and social worker from the team; this initial meeting resulted in a positive screening for Aspergers syndrome which was discussed with R. R agreed to be put forward for diagnosis and expressed a great deal of relief that there may be some reason for the various difficulties he had experienced all of his life. He has engaged well with the support offered as he feels that the staff have some understanding of his long standing difficulties. The ASN team have been advocating on his behalf whilst R is waiting to for his diagnostic assessment.
Case 3: A
A is a 59 year old mother of a son who has been diagnosed with AS for 5 years, but has had long term difficulties. She is in reasonable physical health, but sees her GP regularly about anxiety and high blood pressure. Her husband has been recently diagnosed with cancer. A lives in his own flat, but is highly dependant on his elderly parents for help with finance and keeping his flat well organised and clean (environmental health have been involved). A has a habit of arriving at his parents’ house at odd times of the day, expecting immediate help, which they find very stressful. Now, with the extra demands of hospital visits for a course of treatment, A’s mother has felt close to despair. ASN supported the parents to put boundaries around A’s visits home and helped them to accept that if they were not at the house when A arrived, A would cope with this, either waiting or calling back later. A’s mother reports that both herself and her husband feel tremendously relieved and their relationship with their son has improved as a result.
Case 4: K
K is a young woman who has a long history of contact with services, firstly as a looked after child and later with Learning Disabilities services and children’s services when she became a parent. K presented with various difficulties and would sometimes become involved with the police because of violent incidents (as victim and perpetrator). K had multiple and complex difficulties with housing, health and an outstanding charge of affray but was often chaotic and difficult to engage. K reached crisis point and was at risk of a custodial prison sentence and loosing her local authority accommodation. The ASN social worker was able to engage with AS through understanding her needs as an AS sufferer and support K through the criminal justice system by ensuring she understood what was required of her and reminding her of the various appointments with Probation and the courts she needed to attend. K was eventually given a community sentence following input from ASN and placed on emergency re-housing register following direct intervention by ASN with Norwich City Council. K has been offered more suitable and appropriate housing allowing her to feel more secure and settled and the threatened custodial sentence has been avoided.
Case 5: W
W has a special interest in all things concerning the growing, production and use of tea. He has visited tea plantations in the Far East and reads widely on the subject. After dropping out of college because of bullying, W was drifting with no particular goals in life. His mental health was deteriorating. W contacted ASN whilst seeking work and, given his specialist skills and knowledge, a placement was arranged and supported at a shop specialising in tea sales. W was able to use his accumulated knowledge fully as part of this work; the other staff gained some knowledge of AS via the ASN support staff. W was well thought of during his placement and offered part time paid work at the shop. W has a clear purpose in life and is growing in confidence as a result.
Things people have said about the service:
‘That’s a relief, now I can have some sort of closure’ – 23 year old woman, following feedback of a positive diagnosis of AS
‘Relieved….it explains so much that happened in the past’ -post diagnosis comment from 50 year old man
‘I’d missed out so much….if it had only been picked up sooner…’ – post diagnosis comment from 45 year old woman
‘You are my guardian angel’- parent of person with AS
‘At last I understand why I’ve always felt so different’ – person with AS following post diagnosis workshop
‘I think I can cope with my life now’ – person with AS on completion of 8 therapeutic sessions.
Asperger Service Norfolk Client stats as at 15-4-11
Asperger Service Norfolk Referrals ‐ Referred by Self/family 69 Medical practise 41 Learning Disabilities 12 Mental Health 30 Social worker/key worker 9 Other 17
Asperger Service Norfolk Referrals ‐ Gender Male 146 Female 36
Asperger Service Norfolk Referrals ‐ Diagnosed Diagnosed 54 Waiting for diagnosis 104 Discharged 20
Asperger Service Norfolk Referrals ‐ County location North 22 South 21 East 26 West 28 Norwich 82
Asperger Service Norfolk Referrals ‐Age 18‐30 112 30‐40 21 40‐50 22 50+ 23
Asperger Service Norfolk Referrals ‐support requested. ( More than 100% as some have more than area of support) Financial/benefits 30 Housing 18 Life skills/social skills 63 Work/Seeking work 31 Other 12 None requested 26
RECOMMENDATIONS
Norfolk Health Overview and Scrutiny Committee 13 October 2011 Item no 8
Children’s Autism Services
Report by the Norfolk Health Overview and Scrutiny Committee Working Group
The Committee is asked to endorse the Working Group’s report and refer its recommendations to the bodies concerned..
1. The working group’s report
1.1 On 14 April 2011 Norfolk Health Overview and Scrutiny Committee (NHOSC) agreed terms of reference for a Working Group to scrutinise services for children with autism in the County. The Working Group was established in response to local concerns raised at NHOSC on 3 March 2011.
1.2 Chaired by Cllr David Harrison, the purpose of the Working Group was to:-
(a) Understand the variations in current service provision and their causes. (b) Examine how the commissioners and providers are working towards more equitable and adequate services for children with autism across the County. (c) Make recommendations to aid them in this task.
1.3 The Working Group’s report, including seven recommendations for action, is annexed to this paper.
1.4 Representatives from NHS Norfolk, Children’s Services and Norfolk Community Health and Care have been invited to today’s meeting to answer any questions arising during the Committee’s consideration of the Working Group report.
2. Action
2.1 The Committee is asked to:-
(a) Endorse the Working Group’s report.
(b) Refer the recommendations to the relevant bodies:- NHS Great Yarmouth and Waveney and HealthEast
The Autistic Spectrum Disorder Steering Group NHS Norfolk Norfolk Community Health and Care Norfolk County Council Children’s Services Norfolk County Council Community Services
(c) Ask these bodies to report to the January 2012 meeting of NHOSC on whether or not they accept the recommendations.
(d) Refer the Working Group’s report and recommendations to the Care Quality Commission for information.
If you need this report in large print, audio, Braille, alternative format or in a different language please contact
Maureen Orr on 0344 800 8020 or 0344 800 8011 (Textphone) and we will do our best to help.
Norfolk Health Overview and Scrutiny Committee 13 October 2011
Children’s Autism Services
Report by the Norfolk Health Overview and Scrutiny Committee Working Group
August 2011
Contents
Background Page 2
Our Findings Page 2
- Visits to Child Development Centres
- General findings Page 3
- Identification and referral Page 4
- Assessment and diagnosis Page 4
- Intervention following diagnosis Page 5
- Child and Adolescent Mental Health Services (CAMHS) Page 6
- Starfish Page 8
- Norfolk County Council Children’s Services Page 9
- Transitions Page 11
- Local Initiatives Page 13
Conclusions and recommendations Page 16
Appendices
- Appendix A – List of Witnesses Page 19
- Appendix B – Written Evidence Page 22
- Appendix C – Terms of Reference Page 23
- Appendix D – Recommendations from the National Autism Plan for Page 26 Children
- Appendix E – Extract from the Draft NICE guideline ‘Autism spectrum Page 28 Disorders: recognition, referral and diagnosis in Children and young people’
- Appendix F – List of Recommendations Page 30
Chairman’s Foreword
Autism, as we have learned since our inquiry started in May, is not a single condition, but rather a complex range of related conditions. This contrasts with the last Health Overview and Scrutiny Committee working group I was involved with, looking into services for children and young people with diabetes. While we were faced with some challenges, understanding the condition itself, how it is diagnosed and the treatment available was fairly straight forward. This certainly cannot be said for autism. Rather than referring to ‘children with autism’, we have come to use the more accurate terms of ‘children with an Autistic Spectrum Disorder/Condition (ASD or ASC)’ or ‘children on the autistic spectrum’. I am convinced that we could continue with our inquiry for many more months and still be learning something new.
The complexity of the condition has been reflected in the number of services that we have looked at and the range, in terms of their roles and professional backgrounds, of the personnel we have spoken to (see Appendix A). We have also received a substantial amount of information in writing (see Appendix B) In fact we have gathered so much evidence that it is impossible to cover it all in this report. I apologise if we have left out anything that is considered essential by any of our witnesses.
I would like to take this opportunity to thank everyone who has provided us with evidence, both for their time and their willingness to respond to our questions in an open and constructive way. I hope that they felt they had been properly listened to and had had the opportunity to tell us what they thought was important. Thanks also to the County Council officers who supported our scrutiny review.
Lastly, I would like to express my appreciation to the following members of the working group, who have shown great commitment to pursuing this piece of work: Councillor Michael Chenery of Horsbrugh – Norfolk County Council Anthony Darwood – Norfolk Local Involvement Network John Labouchere – Former member of Breckland District Council Councillor Garry Sandell – Borough Council of Kings Lynn and West Norfolk Councillor Shirley Weymouth – Great Yarmouth Borough Council
We hope that members of the Health Overview and Scrutiny Committee find this report informative and interesting, as well as meeting the terms of reference that the Committee set us.
Councillor David Harrison – Norfolk County Council Chairman of the Scrutiny Working Group
1 1. Background
1.1 The rationale for setting up this working group was based very much on a report from Autism Anglia that was presented to the Norfolk Health Overview and Scrutiny Committee in March 20111. This report was based on a survey of parents of children with autism that was conducted in January 2011 into various aspects of NHS provision. Its conclusions and suggestions for consideration are reflected in the working group’s terms of reference (see Appendix C) and have informed our lines of questioning in meetings with witnesses. At the same meeting in March the Committee also received a report from NHS Norfolk explaining that improving services for children with an ASD had been made a priority area in the PCT’s Children’s Commissioning Strategy. To take this forward, a Rapid Action Team had been established to “develop a model pathway to support earlier recognition, assessment and intervention and make recommendations about the priority actions required to deliver that pathway.” We have therefore been aware that this work has been in progress at the same time as our inquiry and that many of the people we have spoken with have been involved in the Rapid Action Team. The final outcome of this work is yet to be known but we are sure that it will address many of the issues that are raised in this report.
1.2 Our scrutiny inquiry has also been conducted against a backdrop of three recent significant national initiatives. The first of these is the publication of the National Autism Plan for Children (NAPC) under the banner of the National Autistic Society in July 2010. The NAPC sets out guidelines for the identification, assessment, diagnosis and access to early interventions for pre-school and primary school age children with ASD. While some of these guidelines are of a clinical nature, the plan offers useful benchmarks against which local practices and services can be assessed, and these are set out in Appendix D. The second significant publication was the draft guideline from the National Institute for Health and Clinical Excellence (NICE) on the recognition, referral and diagnosis of ASD in children and young people from birth up to 18 years. This draft guideline was published for consultation in January 2011 and at the time of writing (August 2011) it is expected that the final guideline will be available in September 2011. While the draft guideline is too lengthy, and at times too technical, for us to have considered it in detail, it does include a number of “key priorities for implementation” which are outlined in Appendix E. We have also been aware of a consultation being undertaken by the Department for Education on “a new approach to special educational needs and disability”. Many of the proposals outlined in this Green Paper resonate with our findings and carry some clear messages on issues such as the importance of early identification and support, the need to give parents more control, and removing obstacles to education, health and social care professionals being able to work together seamlessly to meet the specific needs of children and their families.
2. Our Findings
2.1 Visits to Child Development Centres
1 NHS provision for children with autism living in Norfolk – Autism Anglia, January 2011. 2
2.1.1 We decided to begin our inquiry by speaking with staff at Child Development Centres across the county. These centres are NHS facilities that bring together a wide range of specialists to provide assessments and services for children with physical and intellectual difficulties. We therefore visited the following centres in May and early June: The Newberry Child Development Centre, Gorleston – covering the NHS Great Yarmouth and Waveney area Upton Road Child Development Unit , Norwich – covering central Norfolk St James Clinic, Kings Lynn – providing services for school-age children in western Norfolk The Roxburgh Child Development Centre, Queen Elizabeth Hospital, Kings Lynn – providing an administrative base for services for pre-school children in western Norfolk (although contact with the child and family takes place in the family home or pre-school setting).
2.1.2 Services for children with an ASD are provided by multi-disciplinary teams and, while there is some variation in the professionals involved, the core membership of each comprised: A (Consultant) Community Paediatrician A Clinical Psychologist A Speech and Language Therapist An Occupational Therapist The National Autism Plan for Children recommends that core membership of an ASD multi-disciplinary team should include an educational specialist, which did not seem to be the case with the teams we visited.
2.2 General findings
2.2.1 A general impression from all of our visits was that multi-disciplinary ASD teams have been set up and developed on the basis of the interest and commitment of the clinicians involved rather than as a planned response to need. Although many of the same professionals are involved, there are separate teams for pre-school and school-age children with their own referral and assessment pathways.
2.2.2 Referrals have increased significantly across the county and waiting times for both an assessment and post-diagnostic support have therefore grown. For example, there has been a 500% increase in referrals in Great Yarmouth and Waveney between 2002 and 2007 and pre-school children there can wait up to a year to be assessed. While there are workload pressures on all professionals involved, there are particular shortages of Clinical Psychologists and Occupational Therapists. For example, a Clinical Psychologist had been appointed to start work at Upton Road Children’s Centre in September to help provide assessments and support for pre- school children but there would be no such resource for school age children. We were also told on more than one occasion that, while OTs may be involved in assessments, there is no OT treatment service funded by the NHS. These shortages therefore seem to impact particularly on the support available for children and families following assessment and diagnosis. Workload pressures have also been increased in some cases by staffing cuts or frozen posts. For example, the number of sessions for Speech and Language Therapy at the
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Roxburgh Centre has been halved since last year and administrative support has been reduced from five days to three. In NHS Norfolk’s area, services for school- age children seemed to be more stretched than those for pre-school children.
2.2.3 There seem to be separate waiting lists for assessment, then for diagnostic Panel meetings and then for support services after diagnosis.
2.3 Identification and referral
2.3.1 It is generally accepted that early diagnosis and intervention lead to better outcomes by preventing the escalation of difficulties for the child and the family. However, there are several reasons for this not happening. Firstly, health professionals are rightly cautious not to misdiagnose and therefore wrongly ‘label’ a child for life. To receive a diagnosis of having an ASD, a child must have impairments in all three areas of social communication, social interaction and social imagination (the “triad of impairments”). There therefore have to be signs of impairment in each of these areas for a referral for assessment to be accepted. This may lead to a child needing to be re-referred more than once over a period of time and not receiving any support in the meantime.
2.3.2 There would also seem to be a pressing need for more awareness training for primary healthcare professionals, including GPs, staff in early years settings such as Children’s Centres and playgroups/nurseries, and school staff so they can recognise the signs that warrant a referral for assessment.
2.3.3 Health Visitors should play a crucial role in early identification through health checks on all children at the age of two but we were informed that in recent years the service had become more focussed on safeguarding and working with vulnerable families. However, as part of a central Government initiative, there is currently a drive to recruit and train a number of additional Health Visitors – a total of 72 in the NHS Norfolk area by 2015 and 14 in the Great Yarmouth and Waveney area. While the training for all these new staff would cover recognition of the possible signs that would warrant a referral for assessment, some would need additional training so they have a particular expertise in ASD and can act as the first point of contact.
2.3.4 In the east and west of the county there are clear, written pathways for referrals and multi-disciplinary assessments. These show that referrals can be made by a wide range of professionals involved with children and not just in primary care. However, there do not seem to be written pathways for central Norfolk and we were told by staff at Upton Road that all referrals come from GPs, apart from some from Speech and Language Therapists for pre-school children.
2.4 Assessment and diagnosis
2.4.1 A diagnosis of ASD can be made from the age of two upwards but, as the National Autism Plan for Children points out, “as ASD is a developmental disorder, the presentation will vary with age and, in any one individual, vary over time. The characteristics of ASD may be more prominent at some ages than others.”
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2.4.2 Higher functioning children, for example those with Asperger syndrome, are particularly difficult to diagnose. A clear diagnosis may therefore not be possible until a significant event in the child’s life triggers a clearer manifestation of the symptoms, such as starting school or even the transition to High School or the onset of adolescence. We were also told that, although the incidence of ASD is much higher in boys, girls could also be more subtle in masking the symptoms. Many children with an ASD are also diagnosed with additional needs including mental health, learning and sensory perception difficulties. They also often have other disorders such as Attention Deficit Hyperactivity Disorder (ADHD), Obsessive Compulsive Disorder (OCD), or epilepsy.
2.4.3 The Autism Anglia report concluded that “the approach to assessment for diagnosis of ASD appears to vary across the County and to be inconsistent within individual children’s development centres”. We have noted that there is no single assessment tool or model but that it is accepted as good practice that assessments were multi-disciplinary and required the child being observed in at least two different settings, including school if of school age. This seemed to be accepted practice in all but the school-age service at Upton Road Children’s Centre, where we were told that less than 20% of children received a proper assessment and that there was a risk of children being misdiagnosed. Complex assessments, such as where a child has been re-referred, may also require the use of a diagnostic tool such as the Autism Diagnostic Observation Schedule (ADOS) which could be very time consuming. However, we were told that no-one was trained to use ADOS at Upton Road.
2.4.4 In the west of the county, a new post of ASD Specialist Nurse had been created six years ago at St James Clinic. This was not a nationally recognised nursing specialism and there are only two other similar posts in the country The current postholder had trained in general, mental health and learning disability nursing, and was fully involved in the whole range of work within the team, including assessments. We considered this model to be a very effective use of resources.
2.4.5 We also noted that the pre-school team at the Newberry Child Development Centre has adopted the practice of allowing parents of pre-school children to choose their own “lead professional” who liaised with the family to find out what their concerns were and act as a link to the other professionals involved. Once again, we found this to be a positive model that could usefully be adopted by others.
2.5 Intervention following diagnosis
2.5.1 One of our witnesses offered a view that behaviour problems in children with an ASD were often a response to people around them “not getting things right”. Another witness advised that research findings indicated that appropriate education and support for parents was the most important intervention that could be offered. A major plank in the support available for parents following diagnosis is therefore involvement in an ‘Early Bird’ or ‘Early Bird Plus’ programme. These programmes have been developed by the National Autistic Society, with Early Bird
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being aimed at parents of pre-school children and Early Bird Plus for parents of school age children up to 8 years of age. Both programmes consist of a mixture of group sessions (usually for six families at a time) and home visits. For school age children, the school is invited to send a member of staff to join the family on the programme but not all schools are prepared to release staff for this. The programmes consist of three strands: parents learning to understand the condition, being helped to improve communication, and being able to understand and manage their child’s behaviour. These programmes seem to be highly regarded by families and increase their confidence in responding to their child’s behaviour. However, while all families are offered a place on these programmes there are significant differences in how long they have to wait for a place. For example, in central Norfolk the next planned Early Bird course was three months away and there were already twenty families on the waiting list for six places, whereas at the Roxburgh Centre in Kings Lynn there was no waiting list and the next course would be arranged as soon as there were enough families who wanted to take part.
2.5.2 We heard briefly about a training programme called ‘Norfolk Steps’ which was originally for professionals working with children who may present challenging behaviour. However, this had been extended to parents from 2009 and had already accumulated a waiting list. We are unsure as to whether this programme complements or substitutes for the Early Bird programmes for parents who are having difficulties with behaviour management.
2.5.3 We also noted that at St James Clinic, the Early Bird Plus courses are run by the ASD Nurse and a Speech and Language Therapist. This Nurse is also involved in providing free training to staff in a number of schools and conference workshops on specific aspects of the Autistic Spectrum, for which there had been a good uptake and positive feedback.
2.5.4 The National Autism Plan for Children recommends that core membership of an ASD multi-disciplinary team should include an ASD family support worker. The only clear evidence that we found of this was the Specialist Nurse post at St. James Clinic. Apart from running the Early Bird Plus courses, the ASD Nurse and Speech and Language Therapist meet with families to discuss issues of concern and signpost them to sources of further support. Families were also given the Nurse’s contact details should they need further support, but with the numbers involved (around 450 children and young people diagnosed with an ASD in west Norfolk), it was not always possible to make a timely response. We were told that having additional support in this area, not necessarily from a qualified professional but from someone who was trained to undertake specific tasks, would make a significant contribution to the work of the team.
2.6 Child and Adolescent Mental Health Services (CAMHS)
2.6.1 In 2010, the National Autistic Society (NAS) published a report entitled ‘You Need to Know’ which raised a number of concerns about CAMHS at a national level, not least that many CAMHS professionals did not understand autism and did not know how to communicate with children on the autistic spectrum. The report also quoted
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the findings of a recent study which showed that as many as 71% of children with autism have mental health problems, such as anxiety disorders, depression, and obsessive compulsive disorder, and 40% have two or more.
2.6.2 The Autism Anglia report to this Committee in March 2011 concluded that “we have families referring themselves to us and telling us of experiences with Norfolk CAMHS that are not dissimilar to those in the National Autistic Society’s report”. The main NAS recommendations that could be implemented locally are: Local CAMHS should have the capacity to provide 24-hour support to children and families who need it CAMHS staff should have basic training in autism and access to specialist autism advice from within the service Each Primary Care Trust should develop specific pathways for mental health support for children with autism
2.6.3 CAMHS provide for a wide spectrum of needs, including universal preventative services. They are therefore divided into four ‘tiers’: Tier 1 – services which involve professionals with whom all children would normally come into contact, such as GP’s, teachers and Health Visitors. Tier 2 – more specialized services that respond to concerns around a child’s emotional or behavioural well-being. Tier 3 – multi-disciplinary teams of specialist mental health professionals Tier 4 – specialist mental health services that are often provided at a regional level, such as in-patient services.
2.6.4 Tier 2 services are delivered through a number of different providers in a range of settings, including NHS paediatric services. In Norfolk, five ‘Family Solutions’ teams are jointly commissioned between the NHS and Norfolk County Council to provide an early intervention service for children and young people aged 4 to 18 who are having mild to moderate difficulties with their behaviour or emotions, or other issues such as family relationships. This service is ‘hosted’ by Norfolk County Council Children’s Services but is provided by staff from primary mental health, social care and education backgrounds. Apart from working directly with children and parents, the teams play an important role in identifying school age children with an ASD and referring on to Community Paediatrics or Tier 3 CAMHS if they already have a recognisable mental health problem. The service fits well with the focus on early intervention and integrated accessible services for families, as well as prioritising those children who are most at risk of developing mental health problems.
2.6.5 Tier 3 services are commissioned by the Primary Care Trusts from Norfolk and Waveney Mental Health NHS Foundation Trust and are delivered by clinic-based teams comprising Psychologists, Psychiatrists, Psychotherapists, Art Therapists, Family Therapists, Nurses and Primary Mental Health Workers. They may also include other professionals such as social workers and play therapists.
2.6.6 We met with a range of staff from Tier 3 CAMHS and a representative of joint commissioning arrangements between the NHS and the County Council around the mental health needs of children aged 0-18 years. The main findings from this meeting were:
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In terms of the recommendations in the ‘You Need to Know’ report, local CAMHS teams in Norfolk do not include ‘ASD specialists’ or offer 24-hour support to children and families. However, a recent review of the training needs of staff had identified a need to improve competencies around the early recognition of ASD and a foundation training programme had been put in place to address this, among other issues. It had been intended to follow this with a programme of more specialist training but the future of this had been left uncertain by a 50% reduction in the training budget. The service is commissioned to work with children with a recognised mental health problem and is felt by staff to be fully committed within current resources. It was therefore also felt that additional funding would be required if CAMHS were to be able to work in a more holistic way, including preventive work. It was suggested that the figure of 71% of children with autism also having mental health problems was misleading because most of these problems will only emerge and be problematic at certain times of young people’s lives, for example a surge in the number of referrals at Year 6 due to young people not being able to cope with the move to high school. Reductions had been made in the County Council’s contribution to the CAMHS pooled fund but, from a commissioning viewpoint, it was felt that there were opportunities to join up services and make more effective use of resources.
2.6.7 We also noted that CAMHS have been represented in the work of the NHS Norfolk Rapid Action Team and that the revised CAMHS strategy for 2011-2014 has identified two areas that need to be addressed in relation to children and young people with “behavioural and social difficulties, including ASD and ADHD.” These are that: “Existing pathways are not fully in line with best practice, and; Post-diagnosis support, including in-school support, behaviour management support and education for parents needs enhancing” The strategy therefore proposes that “an outcome focused integrated pathway be designed, commissioned and implemented” by October 2012 as part of the work of the Rapid Action Team.
2.7 Starfish
2..7.1 Starfish provides Tier 2 and Tier 3 services to children with learning disabilities who also have severe social and communication difficulties or significant emotional and behavioural difficulties. The service is commissioned from Norfolk Community Health and Care and provided through three teams covering central, west and east Norfolk. Each team comprises a mixture of Psychologists, Assistant Psychologists, Learning Disability Nurses, a Family Support Worker, a Family Therapist and administrative support. However, the service is community based and offers a range of interventions involving individual work with children and young people, advice and information for parents and a consultation service for other professionals. In addition to home visits, meetings could be held in other community settings such as special schools. The usual age range is 5 to 18 years, although there is some flexibility around this.
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2.7.2 In discussion with the Lead Clinical Psychologist from the Central Starfish team, we learned that: Starfish had only been in existence as a county-wide integrated service for less than three years. About 50% of children and young people referred to the service were on the autistic spectrum. All of the Psychologists employed by the service were trained to diagnose ASD and Continuous Professional Development for all staff included updates on autism. Starfish deals with children who have an obsessional anxiety rather than obsessional interests, which was usually dealt with by educating parents and others around the child to cope with these obsessions. With obsessional anxiety, it was important to work with the child around managing emotions and tolerating change. Although interventions were time limited, children could who had already received a service could be referred back at any time.
2.7.3 We were also told that there is quite a high rate of re-referrals for assessment where children do not meet the criteria for a service. There is therefore a ‘hole’ between different services such as Starfish and those for children with Attention Deficit Hyperactivity Disorder and there needs to be some way of ‘holding’ these families whose children do not have a formal diagnosis but who may be struggling to cope. At present, services such as Starfish do not have the resources to provide such assistance.
2.8 Norfolk County Council Children’s Services
2.8.1 Although the main focus of our inquiry has been on health services, it would be impossible to give a picture of the support available to children with an ASD and their families without taking account of the roles played by Norfolk County Council’s Children’s Services Department - either directly, jointly with other organisations or commissioned from outside providers. Apart from the provision of services that benefit children with ASD, Children’s Services also have a key role in raising the awareness and skills levels of staff working in pre-school and school settings. We therefore met separately with a group of senior managers from Children’s Services to learn about these services and some recent developments.
2.8.2 Given the importance attached to early identification, staff in early years settings have a pivotal role to play. We have been informed that all children aged three and four are entitled to early education in a registered early years setting and all of these settings are required to have a designated Special Educational Needs Co- ordinator who has specific training to identify and support children with Special Educational Needs, which will include some but not all children with an ASD. Early years support teachers employed by Children’s Services offer additional support and advice to early years settings and providers have access to information materials and training. Training on supporting children with an ASD was offered in 2010.
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2.8.3 Children’s Services also commission a network of Sure Start Children’s Centres across Norfolk which provide a range of services to all children under five and their families, including advice on parenting and access to specialist services for families, health screening and health visitor services. The Centres therefore also have a crucial role to play, not only in the early identification and referral of children with an ASD, but also in supporting parents and teaching coping strategies. Integrated within the Children’s Centres, the Department provides a Portage Service which supports about 200 children under five at any one time through weekly home visits focussing on family support and improving the child’s cognitive development. We noted that portage staff have also been training other staff in Children’s Centres to support children with disabilities so they themselves can concentrate on those with the greatest need.
2.8.4 For school-age children, Children’s Services provide a number of services that, while not specific to ASD, can provide appropriate support. A number of children with an ASD are assessed as having special educational needs (SEN) and issued with a ‘statement’ of what these needs are and what provisions are necessary to meet those needs. However, the point was strongly made to us that this does not apply to all children with an ASD and that issuing a statement of SEN for a child who does not need the additional resources that this attracts amounts to unnecessary labelling. About 1000 of the 4500 or so children with SEN in Norfolk are educated in a special needs school, with the rest receiving support to remain in mainstream schooling. A total budget of approximately £30 million is devolved to schools as appropriate to provide this support to children with SEN, usually through employing teaching assistants. For children with an ASD who have significant or specific needs, this should include support from a Specialist Support Assistant or an Advisory Support Teacher who has experience and skills in working with children with an ASD.
2.8.5 Specialist Support Assistants are part of an Educational Psychology and Specialist Support Team, which also includes Educational Psychologists and Educational Social Workers. This service is delivered from local bases so as to provide maximum responsiveness and, apart from working with individual children and staff in the school setting, it also organises Area Autistic Networks to offer targeted training to support professionals working with pupils on the Autistic Spectrum. However, schools have a considerable level of autonomy and the uptake of this training varies considerably between different schools. Apart from the requirement for each school to have a designated Special Educational Needs Co-ordinator, who would access specific training, it was up to head teachers and governors to decide how to comply with disabilities and equalities legislation, and the local authority can only advise and assist them in this respect. It is only if a school is found to be failing in this respect by an Ofsted inspection that it can be required to take remedial action.
2.8.6 A very positive recent development has been the creation of a network of Specialist Resource Bases (SRBs) for children with an ASD/Social Communication Difficulties in both primary and secondary schools across the county. The main purpose of these SRBs is to provide short-term placements (usually two terms) to assess and plan around whether a child needs a special school placement or additional support in a mainstream school. There is an expectation that parents or carers will be
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involved in planning for the placement, supporting the child and ensuring their attendance, and reviewing the placement. Another important element was that, when commissioning these bases, the local authority can require the staff to undertake specific training. As at June 2011, there were nine such bases up and running and additional funding was available to set up more to provide more equitable provision across the county.
2.8.7 As far as practical help for families is concerned, we heard that Children’s Services have significantly increased provision to enable parents or carers of children with a disability to access ‘short breaks’. This provision ranged from short residential placements for children to providing care in the family home, and the number of children involved had more than doubled to over 1800 in the three years to March 2011. While some of this provision explicitly caters for ‘autistic children’, the numbers involved would suggest that only those with high level needs would qualify.
2.8.8 We have also been aware that Children’s Services may become involved with children with an ASD and their families through a number of other routes such as the Children with Disabilities or Children in Need teams, or as Looked After Children. Children’s Services also work in partnership with the Primary Care Trusts in providing Family Solutions Teams across the county (see paragraph 2.6.4 above). While it would have been fascinating to explore these areas, however, our time was limited and we had to concede that they were outside of our terms of reference.
2.9 Transitions
2.9.1 The importance of involving parents and key professionals in planning for key transitions in the lives of children and young people with an ASD has been a recurring theme in the evidence we have received. The start of mainstream schooling at age five and particularly the transfer to secondary school have been cited as times when difficulties begin to surface or are exacerbated, and there are peaks in referrals for assistance. We have been told that early years settings have the responsibility to arrange effective transition meetings for all children with additional needs when they are about to move on to primary school, and that they should follow “county advice and guidance” in doing so. Presumably, there is similar advice and guidance concerning the transition from primary to high school but we unfortunately did not have time to investigate further. However, there would appear to be a number of children who struggle with these transitions without appropriate support, which emphasises the importance of detailed planning and ensuring that the right information is passed on to the receiving school.
2.9.2 In addition to such obvious milestones, however, there are numerous changes in arrangements and routines that require understanding of the individual, and clear communication and planning between parents and others involved with the child. These are well illustrated in a ‘Transitions Good Practice Guide’ recently published by Norfolk’s Autism Spectrum Disorder Steering Group.
2.9.3 The last major transitions for young people with an ASD are leaving school and, for
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some, moving on to being supported by services for adults. We therefore met with the ‘Person Centred Transition Lead’, funded jointly by Norfolk County Council’s Children’s Services and Community Services departments to ensure that there is an effective transition service for young people with additional needs aged 13 to 25. The main points to emerge from our discussion were that: Transition planning starts in schools in Year 9 for children with a statement of Special Educational Needs (SEN) or any other child who is identified by the school’s Special Educational Needs Co-ordinator (Senco) as being vulnerable. Guidance Advisers employed by Norfolk County Council’s Children’s Services department are central to this process as they follow the young person through the whole process to the age of 25. Apart from regular meetings with Sencos and other school staff, they also work directly with young people to support them into further education, training or work. Since recent cuts in their funding, support from Guidance Advisers after the statutory school leaving age has been targeted more towards young people in special schools than those in mainstream education. Young people with severe autism will have a social worker or transition worker funded by Community Services from the age of 17 to ensure continuity of funding and care. However, the threshold of needs for adult services is higher than for those for children and many young people with an ASD who have been supported in school through the SEN process will not be eligible for support from Community Services. Similarly, those who have received help from a Paediatrician or other specialist health services for children are likely to be transferred to a GP or other mainstream provision when they reach the age of 18. Further Education colleges in Norfolk have facilities that recognise the need for additional support for young people with an ASD. For example, City College Norwich runs a ‘Phoenix Purple’ course where the curriculum is tailored to the needs of individual students and Autism Anglia has been involved in ensuring an autism friendly environment. However, this support is only available in college time and does not address difficulties around social interaction outside of college. Another witness thought that these courses were limited to higher functioning young people and that there was generally a shortage of opportunities for developing independent living skills. There are examples of positive work experience placements and schemes to prepare young people for work. For example, Project Search is based in the acute hospitals across the county and provides work placements supported by the local further education college on an outreach basis. The project has had a high rate of success in terms of the young people moving on to paid employment. However, it would seem that there is an overall shortage of opportunities to help young people on the autistic spectrum, or other associated conditions, to prepare for, find and retain work.
2.9.4 We were told that a great deal of work had been undertaken to ensure that there is an effective transition process in place and that all relevant professionals were aware of it. This included the use of Transition Protocols and pathways. There is also a long-standing Transition Strategy Group, convened by the Transition Lead, which could make recommendations but not commit resources or sign off pieces of work. However, we also noted that the Green Paper on special educational needs and disability proposes that “by 2014, children and young people who would
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currently have a statement of SEN or learning difficulty assessment will have a single assessment process and ‘Education, Health and Care Plan’ for their support from birth to 25.” The Green Paper promises a programme of action setting out more detail by the end of this year. However, it makes clear the areas in which vulnerable young people are being failed by current arrangements, including poor quality work experience and a lack of supported employment opportunities.
2.10 Local Initiatives
2.10.1 Apart from the national initiatives noted at the beginning of this report, our inquiry has also coincided with some significant local initiatives.
NHS Norfolk’s Rapid Action Team
2.10.2 In response to the decision to include improving services to children with ASD as one of the priorities in its Children’s Commissioning Strategy, NHS Norfolk convened a Rapid Action Team (RAT) in September 2010 to redesign the model for the delivery of ASD services to provide greater equity across NHS Norfolk’s area and integrated pathways across health and education services. This work has taken account of the National Autism Plan for Children and the NICE draft guideline since its publication in January 2011. The RAT is a multi-agency, multi- disciplinary group that is informing NHS Norfolk and its provider organisation, Norfolk Community Health and Care (NCH&C) in designing a new ASD pathway for identification, referral, assessment and intervention, which is planned to be implemented in April 2012. The group has included representatives from Family Voice and Autism Anglia, who will ensure that parents and carers will be able to understand this new pathway and that it addresses the weaknesses in current arrangements that have been identified. We understand that there will be separate pathways for children up to the age of 5 and those aged 5 to 18, but that common features will include: Compliance with NICE guidelines An integrated, holistic approach to address the overlap between ASD and other neuro-developmental disorders, and therefore eliminate the various ‘hoops’ that children currently have to go through to have all of their needs addressed Joined-up working across health, education and social care to provide an integrated care plan Ensuring that professionals have appropriate training to undertake their role in the pathway, for example recommending that school and early years staff use Autism Spectrum ‘Inclusion Development Programmes’ Conducting a large part of assessments in advance of multi-disciplinary assessment panels Enabling parents to make a referral for assessment and therefore reducing their reliance on professionals such as GPs Providing appropriate support to the child and parents before a formal diagnosis Ensuring that the interventions provided are supported by a clear evidence base in order to maximise outcomes and cost effectiveness. Recognising that the most effective intervention is education and support for
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parents/carers regarding the needs of a child with autism Providing equity of access to assessment and intervention across NHS Norfolk’s area.
2.10.3 Once the pathway design has been agreed, a gap analysis will be undertaken to inform the staffing adjustments that NCH&C will need to make to deliver the new pathways. However, we have been informed that changes in health inputs will be achieved through service redesign rather than additional funding. Even so, the proposed change to a tariff system of payment, where ‘the money follows the patient’, should ensure a stronger link between identified needs and service provision.
Great Yarmouth and Waveney Rapid Action Team
2.10.4 We have also received evidence of a similar piece of work that was undertaken for NHS Great Yarmouth and Waveney’s area two years ago and which led to a final business proposal being completed in April 2010. While this piece of work pre- dated the draft NICE guideline, a gap analysis was conducted using the National Autism Plan for Children recommendations, and a proposal was made to increase staffing by one whole-time equivalent (WTE) Specialist Clinical Psychologist for neuro-developmental disorders, one WTE Specialist ASD Practitioner, two WTE Specialist Family Assistants and 0.5 WTE administrative support. This would have required additional funding in the region of £350k but the proposal was put ‘on hold’ indefinitely and it remains to be seen whether compliance with NICE guidelines or some other national initiative will enhance its chances of being reconsidered. While the longer-term aspiration is for shared Norfolk-wide pathways, each Primary Care Trust needs to work closely with its respective providers to make this achievable.
Norfolk Autistic Spectrum Disorder Steering Group
2.10.5 One of the ‘key priorities for implementation’ in the draft NICE guideline is that “there should be a local ASD strategy group with representation from health and mental health services, education, social care, parent and carer service users and the voluntary sector”. According to this recommendation, the aims of this group should include: Improving early recognition of ASD by raising awareness of the signs and symptoms of ASD through training. Making sure the relevant professionals (healthcare, social care and education) are aware of the local ASD pathway and how to access diagnostic services. Supporting the smooth transition to adult services for young people going through the diagnostic pathway.
2.10.6 The National Autism Plan for Children goes beyond the NICE guideline and recommends “a local ASD co-ordinating group for strategic planning of training and service needs/development in each local area with representation from all statutory and voluntary services together with users of the service…….Its responsibilities should include strategic planning and the facilitation of informed developments; audit and evaluation; local area training for parents, carers and
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professionals; academic and training links to inform local practice.” 2.10.7 The Rapid Action Team led by NHS Norfolk has performed a strategic function in relation to developing the new ASD pathway but our understanding is that this group will cease to exist once the pathway is implemented. Since 2003, however, there has been in existence a Norfolk Autistic Spectrum Disorder Steering Group for children, young people and families. This is a wide ranging multi-agency group with representation from the statutory and voluntary sectors, including parents and carers and education providers. Members of this group have participated in the Rapid Action Team and there has been a recent internal debate concerning its role which resulted in a revision of its terms of reference in May 2011. According to the revised terms of reference, the group’s current purpose is to provide a multi- agency forum for statutory and voluntary organisations and parents to:
Provide a point of reference for other individuals/groups working with children and young people with an autistic spectrum disorder (ASD) in the county.
Raise awareness of gaps to the relevant agency and provide possible solutions to the way forward to close these gaps within a reasonable timescale by sharing information and concerns identified by members in their specific roles.
Discuss issues and influence developments relating to children and young people who have an autistic spectrum disorder (ASD).
Share information and good/best practice and disseminate this within members’ respective networks.
Contribute to local, regional and national consultations relevant to children and young people with an ASD and their families.
Work collaboratively on relevant projects.
Act as a stakeholder reference group for ASD related proposals within education, social care and health.
Have representation on relevant strategic and operational forums/boards/steering groups/working groups etc.
2.10.8 Another issue has been the Steering Group’s line of reporting in terms of influencing decision making. The revised terms of reference specify that the group has “the status of a subgroup/associate group of Norfolk’s Learning Difficulties and Disability Programme Board” and we have been informed that in future it will report to the newly-created Children’s Partnership from when it meets for the first time in early 2012.
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3. Conclusions and recommendations
3.1 We have met with a wide range of witnesses in the course of our inquiry and, while our meetings have been very informative, each has also opened up a number of new issues and questions, many of which we have unfortunately not had the time to pursue. Our conclusions and recommendations are therefore limited to the evidence that we were able to gather in the time available.
3.2 It seems to be generally accepted that the new pathway being developed by NHS Norfolk and Norfolk Community Health and Care will address many of the problems identified with current arrangements for children and young people on the autistic spectrum and their parents or carers. Parents will be able to refer their children for assessment themselves, for example, without having to ‘convince’ a GP or other professional. In particular, there is wide agreement that implementation of the draft NICE guideline and the recommendations in the National Autism Plan for Children will lead to earlier identification, more seamless working between health and other professionals, more personalised care and the prevention of young people falling through the net. The new pathway will also ensure greater equity of access to services, both in terms of geographical location and between pre-school and school age children, and a shorter time span between identification and referral, assessment and intervention. The inclusion of work on an improved pathway for CAMHS is also welcomed. The involvement of parents and carers, as well as a range of professionals, in the development of this pathway should also ensure that it is widely understood. We are concerned, however, that the work already undertaken in this field by NHS Great Yarmouth and Waveney is indefinitely ‘on hold’ and that this will create significant inequalities between the two areas within the present PCT cluster. We therefore recommend that NHS Great Yarmouth and Waveney and HealthEast give equal priority to this area of work and assess how a similar pathway can be implemented in their area.
3.3 We are also concerned that the impetus for carrying through these changes may be lost once the Rapid Action Team led by NHS Norfolk is wound up and the proposed changes to NHS commissioning arrangements are implemented. The ASD Steering Group would seem to be the only existing body in a position to evaluate and report on progress in implementing the new ASD pathway, including the NICE guideline and NAPC recommendations. We recommend that the ASD Steering Group considers undertaking this role or that the current Rapid Action Team is put on a longer term footing to do so.
3.4 It remains to be seen how far the transformation of services can be achieved through service redesign alone or whether additional resources would be needed. From our clinic visits, we feel sure that a gap analysis will reveal varying shortages of trained staff in the Child Development Centres, in particular of Clinical Psychologists and Occupational Therapists. However, we have also concluded that there are some other changes that could make a positive contribution to the functioning of these teams:
Firstly, we felt that the ASD Nurse post at St James Clinic offers a broad and flexible model of working that could make an important contribution to the implementation of the new pathway.
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We have also noted that one of the functions undertaken by the current post holder is to provide a support line to families of children who had already been diagnosed as being on the autistic spectrum. However, the sheer numbers meant that it was not possible to guarantee a timely response and it was felt that having somebody who was specifically trained for this task would make a significant impact. This seems to fit with the recommendation in the National Autism Plan for Children that multi-agency, multi-disciplinary teams should include family support workers, one of whose functions would be providing families with “information about local parent groups, education and training and information about support services.” The National Autism Plan for Children also recommends that “a named key worker should be appointed at the beginning of the multi- agency assessment process” and that “a key worker or care manager (as appropriate) should be allocated for each family diagnosed with ASD.” The only evidence we received of the use of key workers was on our visit to Newberry Child Development Centre where families of pre-school children are allowed to choose their own “lead professional.”
We recommend that, if it has not already done so, the work on service redesign should include consideration of the roles that could be undertaken by ASD Nurses, Family Support Workers and the use of key workers.
3.5 We welcome the fact that one of the key principles underpinning the new pathway is the provision of “appropriate support before formal diagnosis”. However, we consider the current waiting times for families of newly diagnosed children to participate in Early Bird courses in some parts of the county to be unacceptable. We recommend that there is investment in sufficient capacity, including accredited trainers, to ensure that there is a rolling programme in each area so that there is access to courses as soon as a quorum of participants is reached.
3.6 The need for all professionals involved with children to have training in ASD appropriate to their roles was a recurring theme running through our inquiry. This ranged from recognising and dealing with autism in mainstream settings, especially in early years settings and primary care, to assessment techniques and specialist interventions. However, existing training seems to be delivered in organisational or professional ‘silos’, which often seems to be unnecessary and wasteful, particularly at a time when training budgets are being squeezed. The NAPC sees one of the roles of an ASD “co-ordinating group” as facilitating training for parents, carers and professionals. Once again, the only existing body that could undertake this role would seem to be the ASD Steering Group. We recommend that the ASD Steering Group considers taking the lead in developing a training strategy for professionals that would maximise the use of current resources and lead to inter-agency training where appropriate.
3.7 Many of the clinicians we have spoken with have not understood the basis on which decisions affecting the funding of their service are taken. We believe that the proposed move by NHS Norfolk to a tariff system of funding, where ‘the money follows the patient’, will resolve this and ensure that services are better placed to respond to increases in demand. We understand, however, that this is part of a
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bigger picture that NHS Norfolk does not have entire control over. We recommend that NHS Norfolk and Norfolk Community Health and Care introduce a tariff system of payment for children with ASD as soon as possible.
3.8 We believe that many of the problems that have been brought to our attention concerning the lack of appropriate support for children with an ASD in some schools and the difficulties that some young people face in the transition to adulthood would be resolved by the implementation of the proposals in the recent SEN and disability Green Paper. We also understand that a joint response has been made to the proposals in the Green Paper by the County Council, the Primary Care Trusts and Family Voice but we are not aware of the details of this. However, we feel that time should not be lost in waiting for legislation on this issue and recommend that the County Council’s Children’s Services and Community Services departments, together with the Primary Care Trust cluster, review current arrangements and resources in the light of the proposals in the Green Paper to avoid unnecessary delays in making improvements where they are needed.
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Appendix A
List of Witnesses
Hilary Alton Speech and Language Therapist, Roxburgh Centre, Kings Lynn
Dr K Anand Consultant Paediatrician, Newberry Children’s Centre, Gorleston
Glynis Baker Specialist Speech and Language Therapist (pre-school), Upton Road Children’s Centre, Norwich
Michael Bateman Additional Needs Strategy and Commissioning Manager, Norfolk County Council Children’s Services
Barbara Creed Team Co-ordinator, Roxburgh Centre, Kings Lynn
Gail Dixon Manager, School Health, Newberry Children’s Centre, Gorleston
Dr L Doddamani Consultant Paediatrician, Newberry Children’s Centre, Gorleston
Anne Ebbage Autism Anglia
Sue Foster Senior Nursery Nurse, Newberry Children’s Centre, Gorleston
Sharon Fradley Transition Lead for Young People with Additional Needs, Norfolk County Council Children’s and Community Services Departments
Richard Gilham Professional Lead for Psychological Therapies, Upton Road Children’s Centre, Norwich
Trish Hagen Named Nurse – Safeguarding, Newberry Children’s Centre, Gorleston
Dr J Haider Associate Specialist on Community Paediatrics, Newberry Children’s Centre, Gorleston
Mrs M Hearney Speech Therapist, Newberry Children’s Centre, Gorleston
Dr Rini Hoogkamer Consultant Psychiatrist, Bethel Child and Family Centre (CAMHS), Norwich
Pippa Humphreys Lead Clinical Psychologist, Starfish, Norwich
Helen Jackson Commissioning Manager for Child Health, NHS Norfolk
Julia James Specialist Health Visitor Team Lead, Upton Road Children’s Centre, Norwich
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Sharon Jeffreys Nurse, North House, King’s Lynn
Linda Langham Portage Home Visitor, Roxburgh Centre, Kings Lynn
Christine Lawson Clinical Nurse Specialist, Silverwood Child and Family Centre (CAMHS), Great Yarmouth
Gill Lister Associate Specialist Community Paediatrics, Upton Road Children’s Centre, Norwich
Stuart Marpole Service Manager – Children with Disabilities, Norfolk County Council Children’s Services
Elaine Mash Commissioning Manager, Children & Maternity, NHS Great Yarmouth and Waveney
Hayley Mileham Clinic Coordinator, Newberry Children’s Centre, Gorleston
Michelle Mould Chair, Autistic Spectrum Disorder Steering Group
George Pearce Deputy Service Manager Central, Bethel Child and Family Centre (CAMHS), Norwich
Dr Sarah Rogers Clinical Psychologist, Bethel Child and Family Centre (CAMHS), Norwich
Sarah Ryan Occupational Therapist, Roxburgh Centre, Kings Lynn
David Sheppard Senior Adviser, Norfolk County Council Children’s Services
Pam Singh Specialist Health Visitor, Roxburgh Centre, Kings Lynn
Nikki Smith Autistic Spectrum Disorder Specialist Nurse, St James Clinic, Kings Lynn
Heather Smith Speech and Language Therapist, St James Clinic, Kings Lynn
Sarah Spall 0-5 Strategy and Commissioning Manager, Norfolk County Council Children’s Services
Jonathan Stanley CAMHS Strategic Commissioner, Norfolk County Council and Primary Care Trusts
Dr Stephanie Summers Clinical Psychologist, Roxburgh Children’s Centre, Kings Lynn
Dr Diane Tomlinson Consultant Psychiatrist, Silverwood Child and Family Centre (CAMHS), Great Yarmouth
Dr Ajit Verma Consultant Paediatrician, Newberry Children’s Centre, Gorleston
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Sarah Winter Acting Head OT, Upton Road Children’s Centre, Norwich
Markku Wood Clinical Psychologist, North House, Kings Lynn
Karen Wooddissee Family Voice
Sue Zeitlin Consultant Community Paediatrician, Upton Road Children’s Centre, Norwich
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Appendix B
Written Evidence
NHS provision for children with autism living in Norfolk – a report to Norfolk’s Health Overview and Scrutiny Committee (NHOSC), Autism Anglia, January 2011 (presented to NHOSC in March 2011)
Summary of National Autism Plan for Children (NAPC) – produced by the National Initiative for Autism Screening and Assessment (NIASA), July 2010
Summary of draft NICE guideline ‘Autism spectrum disorders: recognition, referral and diagnosis in children and young people’, January 2011
Summary of ‘You Need to Know’ report, National Autistic Society, 2010
SEN Green Paper: ‘Support and aspiration: A new approach to special educational needs and disability – A consultation’ Department for Education, March 2011
Norfolk’s CAMHS Strategy 2011-2014. Norfolk CAMHS Strategic Partnership, March 2011
Autism Spectrum Transition Good Practice Guide, produced by Norfolk’s ASD Steering Group, March 2011
Information on Norfolk CAMHS Tiers 2 and 3 available on the internet at www.whatsthedealwith.co.uk
Information on ‘Starfish’, the Learning Disabilities Child and Adolescent Service, available on the internet at http://www.norfolkcommunityhealthandcare.nhs.uk/our-services/child- services/child-h-m/children-s-community-learning-disability-team/
Information on autism and “approaches, therapies and interventions” available on the National Autistic Society’s website at www.autism.org.uk
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Appendix C
Terms of Reference
Norfolk County Council
Norfolk Health Overview and Scrutiny Committee
Terms of reference for scrutiny of
Children’s Autism Services
Scrutiny by
A task and finish group of Norfolk Health Overview and Scrutiny Committee Members and a co-opted Member of Norfolk Local Involvement Network Transition.
Membership of task and finish group
Michael Chenery – County Councillor Anthony Darwood - co-opted, non voting member from Norfolk Local Involvement Network Transition David Harrison – County Councillor John Labouchere – Breckland District Councillor Garry Sandell – King’s Lynn and West Norfolk Borough Councillor Shirley Weymouth – Great Yarmouth and Waveney Borough Councillor
Reasons for scrutiny
It is important for young children with autism to receive an early diagnosis so that adverse effects on their education and lives, and the lives of their families, can be minimised. The Committee is aware of local concerns including:-
Parents finding it difficult to have their child referred for assessment and diagnosis. GPs and health visitors not knowing how, where or who to refer families to. Parents saying that once they have received a diagnosis for their child support services to help them manage the behaviour displayed by their child are not easily obtainable. Lack of awareness about the services that Starfish can offer across the county and to support children in school. (Starfish is the service commissioned by NHS Norfolk and provided by Norfolk Community Health and Care to support children with complex and challenging needs, including children with autism). Concern that Norfolk Child and Adolescent Mental Health Services may not be adequately able to meet the needs of children with autism.
Both the service commissioners (NHS Norfolk) and providers (Norfolk Community Health and Care) at Norfolk Health Overview and Scrutiny Committee on 3 March 2011 acknowledged that there is too much variation in services for children with autism across the county and said that they are working towards more equitable provision.
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Purpose and objectives of study
1. To understand the variations in current service provision and their causes. 2. To examine how the commissioners and providers are working towards more equitable and adequate services for children with autism across the county. 3. To make recommendations to aid them in this task.
Issues and questions to be addressed
(a) What are the reasons for the variable approach to diagnosis of autistic spectrum disorders across the county? (b) How far do current services match or fall short of the standards and recommendations set out in the NICE guidelines? (c) What is being done to ensure equitable provision of diagnostic and support services for children with autism? (d) Will the referral and diagnostic pathways being proposed by the PCTs be understandable by professionals within health, education, social care and by the voluntary sector and parents? (e) If school age diagnostic services are not being funded, how are these children being diagnosed? (f) Is it proposed to provide a funded school age diagnostic service? (g) Are pre-school assessment and diagnostic services funded at an appropriate level to meet demand? (h) Are there enough clinical psychologists or other appropriately trained staff available to meet the demand from families who are struggling to manage the extreme behaviours of their child / children? (i) What are the arrangements for transition between children’s and adult services?
People to speak to
Commissioners:- NHS Norfolk (Commissioning Manager for Children) NHS Great Yarmouth and Waveney (Children’s Commissioning Manager) GP Commissioning Consortia (choose one of the emerging consortia)
Norfolk Autistic Spectrum Disorders Steering Group
Providers:- Norfolk Community Health and Care – Community Paediatrics and Starfish (Head of Learning Disability and Behaviour – Community Children’s Services) Norfolk and Waveney Mental Health NHS Foundation Trust – Norfolk Child and Adolescent Mental Health Service – (Central, West, East) Great Yarmouth and Waveney Community Care Community Interest Company Child Development Centres – Community Paediatric Leads
Users:- Autism Anglia & potentially:- Asperger East Anglia (Manager of children & families services) Smartkids OK
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National Autistic Society West Norfolk branch ASD Helping Hands Family Voice
Norfolk County Council Children’s Services Additional Needs Strategy & Commissioning Manager – Norfolk Education Psychological Services. Plus representatives to provide evidence on social care services and looked after children.
Other sources of information
NHS Norfolk and Autism Anglia reports to Norfolk Health Overview and Scrutiny Committee 3 March 2011. National Institute for Health and Clinical Excellence (NICE) guidance – ‘Autism spectrum disorders in children and young people: recognition, referral and diagnosis’ - draft guidance issued for consultation with stakeholders, 28 January 2011 – 25 March 2011. Publication of final guidance expected in September 2011. National Autism Plan for Children (NPAC) – published March 2003 by the National Autistic Society et al. Minutes of NHS Norfolk’s Rapid Action Team on Autistic Spectrum Disorders and Other Neuro-developmental Disorders/Behavioural Services.
Style and approach
Panel-style meetings with witnesses Visiting Child Development Centres
Planned outcomes
A report for Norfolk Health Overview and Scrutiny Committee to agree and present to the commissioners and providers of the services.
Deadlines and timetable
Report to Norfolk Health Overview and Scrutiny Committee on 13 October 2011.
Terms of reference agreed by Date
Norfolk Health Overview and Scrutiny Committee 14 April 2011
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Appendix D
Recommendations from the National Autism Plan for Children National Autistic Society, July 2010
This report deals with services for pre-school and primary school age children with autism spectrum disorders (ASD. It sets out a number of recommendations under the headings of identification, assessment, intervention, resources and training. While many of the recommendations are too detailed and technical to be usefully reproduced here, there are many synergies with the findings of the Autism Anglia survey and what we have found in the course of our inquiry. The following recommendations offer useful pointers to good practice:
There should be a positive response to parental concerns at all times. Parental concern about any developmental problem should trigger referral for a general developmental assessment and not be deferred until the next routine surveillance check. All involved professionals should receive training in ‘alerting’ signals of possible ASD both at pre-school and school age. Assessments should be timely and delay audited. A named key worker should be appointed at the beginning of the multi- agency assessment (MAA) process. MAAs should be undertaken by multi-agency, multi-disciplinary teams which include an educational specialist and an ASD family support worker. MAAs should include: - focussed observations across more than one setting, including functioning in an educational setting for school-age children - a cognitive assessment by either a clinical or educational psychologist with ASD training - a communication assessment by a speech and language therapist with ASD training - an assessment of mental health and behaviour - a full physical examination - an assessment of the needs and strengths of all family members. All professional involved in a MAA should be experienced and knowledgeable about ASD and it should lead to specific recommendations. A written report should be produced and discussed with parents, and the key worker should be appropriately involved in these discussions. This should include a needs based Family Care Plan. There should be an agreed written referral pathway for children with suspected ASD, both pre-school and school age, accessible to all professional and parents. There should be a local ASD co-ordinating group, with representation from all statutory and voluntary services together with users of these services. Its responsibilities should include strategic planning and the facilitation of informed developments; audit and evaluation; training for parents, carers and professionals; academic and training links to inform local practice. A key worker or care manager (as appropriate) should be allocated for each family of a child diagnosed with ASD. 26
The family should receive information about local parent groups, education and training and information about support services from the family support worker. Pre-school children should have access to 15 hours a week of appropriate ASD specific programmes – this does not necessarily imply segregated ASD provision nor 1:1 working. There should be sufficient trained professional capable of setting up comprehensive home and pre-school based ASD specific programmes. For school age children, there should be sufficient ASD teachers who can visit schools and set up as needed appropriate Individual Education Plans, which must include clear ASD management strategies for all staff to use. Multi-agency ASD teams need to maintain contact with families over time through a suitable team member so they can respond appropriately to changes in the child’s and family’s needs. There should be jointly commissioned and funded services to provide ongoing review, support and intervention, including mental health and learning disability services. In particular, funding of key workers, care managers and professionals for family and home based support and help is needed. There should be three levels of training available and these should be evaluated and audited by the local ASD co-ordinating group: - joint multi-agency programmes of ASD awareness training for all professional working with children in the community and for parents/carers - regular ASD specific training for those involved in assessment and diagnosis - training for all staff delivering both specific ASD interventions and other interventions for children with ASD. This should include issues related to understanding ASD and not be limited to single intervention training.
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Appendix E
Autism spectrum disorders: recognition, referral and diagnosis in children and young people
Extract from NICE guideline – draft for consultation, January 2011
Key priorities for implementation
The following recommendations have been identified as priorities for implementation.
A local pathway for recognition, referral and diagnostic assessment of possible ASD.
There should be a local ASD strategy group with representation from child health and mental health services, education, social care, parent and carer service users and the voluntary sector.
The local ASD strategy group should appoint a lead professional who is responsible for the local ASD pathway for recognition, referral and diagnosis of children and young people. The aims of the group should include:
- Improving early recognition of ASD by raising awareness of the signs and symptoms of ASD through training.
- Making sure the relevant professionals (healthcare, social care and education) are aware of the local ASD pathway and how to access diagnostic services.
- Supporting the smooth transition to adult services for young people going through the diagnostic pathway.
There should be a multidisciplinary ASD team (the ASD team) which may include a:
- Paediatrician - Child and adolescent psychiatrist - Speech and language therapist - Clinical or educational psychologist - Occupational therapist.
Access to the ASD team should be through a single point of entry.
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The ASD diagnostic assessment for children and young people.
A case coordinator should be appointed from the ASD team for every child or young person who is to have an ASD diagnostic assessment.
Include the following elements in every ASD diagnostic assessment:
- Detailed enquiry about parent or carer concerns and if appropriate the child or young person’s concerns.
- A medical history including prenatal, perinatal and family history and current health.
- The child’s or young person’s experiences of social care and education.
- A developmental history focussing on developmental and behavioural features consistent with ICD-10 or DSM-IV criteria (consider using an ASD- specific tool to gather this information).
- Assessment through interaction with and observation of the child or young person of their social and communicative skills and behaviours focussing on features consistent with ICD-10 or DSM-IV criteria (consider using an ASD- specific diagnostic tool to gather this information).
After the ASD diagnostic assessment
Construct a profile for every child or young person who has had an ASD diagnostic assessment, including their strengths, skills, impairments and needs to create a needs-based management plan. This should cover learning, communication, self- care and other adaptive skills, behaviour and emotional health, taking account of the family context and needs.
Communicating with parents and professionals about the results from the ASD diagnostic assessment.
After assessment and diagnosis of ASD, make sure the profile is made available to professionals in education and, if appropriate, social care, so it can contribute to the child’s or young person’s individual education plan and other aspects of the needs- based management plan, through for example, a school visit by a member of the ASD team.
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Appendix F
List of Recommendations
Recommendation 1 NHS Great Yarmouth and Waveney and HealthEast give equal priority to this area of work as NHS Norfolk and assess how a similar pathway to that proposed by NHS Norfolk can be implemented in their area.
Recommendation 2 The ASD Steering Group considers undertaking the evaluation and reporting on progress in implementing the new ASD pathway, including the recommendations from NICE and the NAPC, or that the current Rapid Action Team is put on a longer term footing to do so.
Recommendation 3 If it has not already done so, the work on service redesign should include consideration of the roles that could be undertaken by ASD Nurses, Family Support Workers and the use of key workers.
Recommendation 4 There is investment in sufficient capacity, including accredited trainers, to ensure that there is a rolling programme of Early Bird and Early Bird Plus courses in each area so that there is access to courses as soon as a quorum of participants is reached.
Recommendation 5 The ASD Steering Group considers taking the lead in developing a training strategy for professionals that would maximise the use of current resources and lead to inter-agency training where appropriate.
Recommendation 6 NHS Norfolk and Norfolk Community Health and Care should introduce a tariff system of payment for children with ASD as soon as possible.
Recommendation 7 The County Council’s Children’s Services and Community Services departments, together with the Primary Care Trust cluster, should review current arrangements and resources in the light of the proposals in the Green Paper to avoid unnecessary delays in making improvements where they are needed.
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Norfolk Health Overview and Scrutiny Committee 13 October 2011 Item no 9
Hospital Discharge Processes
Suggested approach by the Scrutiny Support Manager (Health)
The Committee will receive an update report from Norfolk Local Involvement Network about its work on patients’ experience of hospital discharge from Norfolk’s acute hospitals.
1. Introduction
1.1 In November 2009 Norfolk Local Involvement Network (LINk) presented a report to Norfolk Health Overview and Scrutiny Committee (NHOSC) about its work on hospital discharge processes and the patients’ experience. The Committee invited LINk to report back in November 2010 with its views on whether the acute hospitals had improved their discharge processes.
1.2 At that meeting representatives of the three acute hospitals in Norfolk accepted LINk’s recommendation:-
‘To have a named key person(s) who has responsibility for engaging with patients and their families in discussing discharge who is accountable for identifying and progressing any actions. This person(s) would need to have influence over all the agencies and professional groups involved’.
1.3 A representative of Norfolk County Council Community Services accepted a further recommendation that:-
‘It should be a rule rather than an option that community social work teams continue to work with people admitted to hospitals where they already hold case responsibility’.
This was accepted with the proviso that it is the agreed direction of travel for Community Services but it might take some time to implement.
1.4 Norfolk LINk intended to continue monitoring hospital discharge processes and NHOSC invited it to report back today with its views on progress in implementing the recommendations made in November 2010. LINk’s report is attached at Appendix A.
1.5 Representatives from the Queen Elizabeth, Norfolk and Norwich University Hospital, James Paget University Hospital and Community Services have been invited to today’s meeting to address the points raised by the LINk report and to answer the Committee’s questions.
1.6 As this topic involves Community Services as well as the NHS, Members of Community Services Overview and Scrutiny Panel have also been invited to today’s meeting.
2. Suggested approach
2.1 After LINk has presented its report, you may wish to question representatives from the hospitals and Community Services on the following points raised by LINk:-
(a) LINk requested that Case Managers at the James Paget University Hospital provide their contact details to patients and family members. Will this be done? (LINk report paragraph 2.2 2.)
(b) How does the James Paget University Hospital respond to the suggestions that Case Managers should receive formal training and that all staff involved in discharge such as ward nurses and doctors should be updated periodically e.g. through multidisciplinary meetings or nurse training sessions? (LINk report paragraph 2.2)
(c) Would the Norfolk and Norwich and James Paget Hospitals consider providing a telephone helpline for post-operation queries such as the Queen Elizabeth Hospital is piloting for patients leaving the Women’s (Surgery) ward? (LINk report paragraph 2.3.1)
(d) Is it possible for the Queen Elizabeth Hospital discharge planning assistants to provide contact details to patients and family members? (LINk report paragraph 2.3.1)
(e) On the four wards at the Queen Elizabeth Hospital that do not have discharge planning assistants, is it possible for patients and their families to be made aware on pre-admission (electives) and on admission (emergencies) about who they should turn to for information? (LINk report paragraph 2.3.1)
(f) Will the Norfolk and Norwich University Hospital look into the matter of discharging patients with a mental health conditions on weekends and bank holidays? (LINk report paragraph 4.2)
If you need this report in large print, audio, Braille, alternative format or in a different language please contact Maureen Orr on 0344
800 8020 or Textphone 0344 800 8011 and we will do our best to help.
Norfolk Local Involvement Network (LINk)
Title of report: Leaving an acute hospital – the patient, family and carer’s experience: Update in 2011 Report for: Norfolk Health Overview and Scrutiny Committee (NHOSC) Report by: Norfolk LINk’s Hospital Discharge Monitoring Team Date: For 13.10.11 NHOSC meeting in public
Contents: 1. Introduction
2. Is a key discharge worker in place?
NNUH – Norfolk & Norwich University Hospital JPUH – James Paget University Hospital QEH – Queen Elizabeth Hospital, Kings Lynn
3. Update on social care support in hospitals
4. Other concerns around hospital discharge
5. Conclusion – is the experience of leaving hospital getting better for patients, carers and families?
Appendix 1: Summary of requests and suggestions
Abbreviations used NNUH - Norfolk & Norwich University Hospitals NHS Foundation Trust QEH - The Queen Elizabeth Hospital NHS FoundationTrust, Kings Lynn JPUH - James Paget University Hospitals NHS Foundation Trust NCS - Norfolk Community Services (previously known as Norfolk Adult Social Services) NCC - Norfolk Care Connect, Norfolk Community Services
Norfolk Local Involvement Network (LINk) 06/10/2011 1 Introduction
Based on a small piece of research about the experience of leaving an acute hospital, LINk reported to this committee in 2009 that poor communication about hospital discharge issues between patients/families and staff was an area that needed urgent improvement. In 2010 Norfolk LINk made four specific recommendations for improvement in the hospital discharge process after members of the public and Age UK Norfolk contacted LINk to tell us about their poor experiences.
Three out of four of LINk’s recommendations made in November 2010 were endorsed by this committee and agreed for implementation by the relevant organisations. One out of the three agreed recommendations has occurred (re: monitoring the outcomes of integrated care pilots through a relevant Scrutiny Panel).
Of the two remaining recommendations, LINk can report back about the priority recommendation – for NNUH, QEHKL and JPUH to put in place 1. A named, key person(s) who has responsibility for engaging with patients and their families in discussing discharge and who is accountable for identifying and progressing any actions. This person(s) would need to have influence over all the agencies and professional groups involved.
Regarding the second recommendation - 2. ‘It should be a rule rather than an option that Community social work teams continue to work with people admitted to hospitals where they already hold case responsibility.’ - we seek assurance from Norfolk Community Services today that this guidance is now in place.
In addition, the LINk discharge team is providing in this report an update on a change to the way social care is managed within a hospital setting, particularly in relation to the way post-discharge support is organised early on.
Norfolk Local Involvement Network (LINk) 06/10/2011 2 2. Priority recommendation: Is a key discharge worker in place?
2.1 NNUH
We would like to start by commending the staff at NNUH who have engaged with LINk members in an open and frank manner; and who have involved LINk very closely with their discharge work since the 2010 report.
To-date: 1. A key worker is to be trialled on Gunthorpe Ward where a staff member will take on this role in addition to their existing duties. 2. The role of ‘Link nurses’ (key workers) has been advertised internally with a specific focus on discharge planning. 3. A new discharge planning project is underway – “Every Patient, Every day – one step towards discharge” – which will have a full-time, discharge project support officer appointed.
We are not optimistic that the roles (#1 and #2) will become an entrenched reality as they are being piloted and advertised as being additional to existing duties, without any corresponding financial remuneration. (The third action pertains to providing support to the overall discharge project and is not directly related to LINk Recommendation 1.)
The overall responsibility for inpatients including their discharge is with the Ward Sisters or Charge Nurses (or Shift coordinators in their absence). There is an understandable concern that a key worker or discharge planner will undermine this aspect of the Ward Sister or Charge Nurse’s work. Our view is that key workers or discharge planners would work in partnership with the Ward Sister or Charge Nurse so that patients - including those with straightforward discharges - would have one, named person that they could ask to speak to about their discharge date and any matters relating to a safe and timely discharge. This named, key worker would also be able to identify any outstanding actions (e.g. medication not ready, notes not written up, information about after-care not given) and chase these up with the relevant staff, department or external agency. Having such a key worker would mean that instances like the following are less likely: a visitor to a hospital ward last year said that she saw a patient on her discharge day dressed and sitting on a chair by her bed from early in the morning to late afternoon, waiting to leave (the reason for the delay was not relayed). We appreciate that this is just one observation and presume that for the vast majority of patients, discharge is smooth – but stories like these indicate that the patient experience of discharge can be improved.
A partnership working arrangement already occurs in the hospital system. For those patients who require moderate to complex health and social care arrangements, Ward Sisters and their teams work in conjunction with: a wide range of therapists
Norfolk Local Involvement Network (LINk) 06/10/2011 3 an Integrated Discharge Team (made up of Specialist Nurses) experts on delayed transfers of care a specialist orthopaedic discharge liaison team the PCT’s Community Liaison Team and a team of social workers. The focus is however on a relatively, small number of patients who require specific and/or possibly urgent intervention for a timely discharge. It excludes other patients who may have to wait several hours before leaving hospital; are not informed about what is causing their minor delay; have not received information about post-hospital care; or/and who may still not know their discharge date. A key worker would enable these ‘gaps’ to be plugged.
A good example of a ‘key worker’ is the Specialist Nurse in the Integrated Discharge Team who coordinates the arrangements for those patients identified as requiring continuing NHS care and who have very complex care needs. LINk shadowed one of these nurses and saw first hand the benefits of having one person oversee the discharge process: she went to the bedside to talk to the patient and his family; gave them her contact details and subsequently went to the ward to chase up outstanding actions. LINk has also heard of a clerical officer being commended for an “excellent” job in expediting discharges in one ward.
However LINk does feel that there are several reasons to be optimistic about the situation at the NNUH for patients and families. Firstly, the shift system for Ward Sisters is currently under the review. In our view if Ward Sisters worked from Mondays to Fridays (am to pm), this may improve communication between staff and patients and families not just about discharge matters and referrals, but also around queries about treatment and care.
Secondly, the hospital is rolling out a new set of discharge-related initiatives which may lead to a further improvement in communication – albeit lacking the personal and pre-emptive touch of a ‘key worker’. For example, in the first tranche of the changes to ward discharge, there will be a board placed above the patient’s bed which will list the names of the patient and the consultant, the planned discharge date and the estimated time of operation. The hospital is also open to taking on a LINk suggestion to add to the board (depending on its size), the name of the nurse in overall charge of the patient - this would enable family members to identify a ‘key worker’. This ‘board’ is to be piloted at Docking, Dunston, Hethel and Coltishall wards and presumably if a success, in all wards.
Thirdly, and finally, LINk members continue to be closely involved in the hospital’s Discharge Steering Group and five working groups. Through these they will input the patient and public perspective and work with the Trust to improve their engagement with patients and families. Members will also monitor the progress of the trial at Gunthorpe ward through LINk’s NNUH subgroup. (The Discharge team’s project ends with today’s report.)
Norfolk Local Involvement Network (LINk) 06/10/2011 4 2.2 JPUH
In general, the role of the key discharge worker at JPUH had already, in part, been delivered by Case Managers although their main focus (as with NNUH & QEH) appeared to be with emergency admissions and those requiring moderate to complex care needs.
Consequently in early 2011 we asked again for assurance from JPUH that: 1. Case managers talk to all patients on a ward, not just those identified as requiring moderate to complex care packages or support; and not just emergency admissions. 2. Case managers provide their contact details to patients and family members so that they can get in touch with him/her.
To date:
1. We have received assurance that the first request is already occurring. As Case Managers are visible on the wards, we were told that they are in a good position to know if a patient requires more information or post-discharge support. The job description for Case Managers states that they must ‘discuss discharge planning with patients, relatives and carers’ and that they should be reducing delays to discharge not just by days and weeks but also by hours. The Case Managers are managed by Discharge Sisters. There are WTE (Whole Time Equivalent) 5.54 Case Managers working on10 wards. (The wards for babies, children and two short-stay wards do not have a Case Manager attached.) We are pleased to hear that the Trust is looking to increase the number of Case Managers for the 10 wards by WTE 3.54.
JPUH has also agreed for LINk representatives to shadow a Case Manager next month to see for themselves how the system works.
2. The second request is outstanding. A new Patient Flow Centre (taking over from the previous Operation Centre) was set up recently to look into improving patient flow throughout the hospital. Our contact at JPUH has said that staff from the centre will be talking about raising the profile of Case Managers with patients and families in the wards, at their next meeting. Can the JPUH representative inform the committee today if this has been agreed and how it will be implemented?
As with the NNUH, the JPUH has a complex discharge system with a discharge team that comprises 5 Case Managers, 3 Discharge Nurses (to deal with organising complex care arrangements), 1 Nurse from primary care (to organise community health care), a number of site managers (to manage the patient flow for whole hospital) and ward nurses. Case managers will specifically organise discharge for those patients requiring moderate to complex care packages whilst ward nurses will be the contact point in the evenings for all patients and families;
Norfolk Local Involvement Network (LINk) 06/10/2011 5 and for all straightforward discharges. JPUH has advised us that this works because Case Managers have a hand-over to the Nurse at the end of their day.
However we are aware that a very small number of patients are still experiencing a lack of information about after-care and medication; and short delays in discharge (between 1 to 4 hours). This view is based on responses that patients gave to questions around discharge in the hospital’s Patient Experience Tracker. The questions were asked between April and July 2011 to patients on 3 wards with findings revealing that 21 out of 34 patients in stroke/cardiac wards had not received information about preventing blood clots on the day of discharge; 13 out of 34 patients were delayed from leaving the hospital with the majority of these citing waiting for medication as the reason; information about the side effects of medication appeared to be inconsistently delivered – out of 19 people being discharged, about 5 had not been informed about side effects on the day of discharge.
We appreciate that this is a very small number of responses in an equally small sample size - and that there are other good initiatives in operation within the hospital such as the Enhanced Recovery Programmes for post-hip and knee operations and breast surgery - but it does reiterate the concerns that LINk have previously raised with this committee. Hence our recommendation to have a key worker who will talk to patients (carers and relatives) and be able to pick up on and progress the outstanding areas that require tackling.
Suggestion: Case Managers should receive formal training (currently they learn on the job). We ask also that all staff involved in discharge such as ward nurses and doctors are up-to-date with the several changes that periodically occur e.g. through the multidisciplinary meetings or nurse training sessions.
Other information: Social care support at JPUH Regarding social care support at the JPUH, there are major changes set to occur in the way health and social care is delivered in the Great Yarmouth and Waveney area, and parts of Norfolk and Suffolk. JPUH is set to support a cluster or clusters of community services providing health and social care services. Each cluster will be grouped according to geographic lines i.e. based on where the patient resides. The pilot cluster will begin in Lowestoft and will bring together specialist nurses, physiotherapists etc. JPUH’s discharge team (specifically the Discharge Sisters and the Case Managers) will liaise with each cluster to identify and progress where a patient can go or how they can receive the support they need, post-hospital discharge. The proposal is for JPUH’s ward Case Managers to be the main contact for each geographic cluster – which we would support.
Norfolk Local Involvement Network (LINk) 06/10/2011 6 2.3 QEH
2.3.1 QEH sees the role of LINk’s key worker as being undertaken by their discharge planning assistants who were in full-complement by the end of 2010.
Currently a team of five Discharge Planning Assistants (at Band 3 which means they are not qualified nurses) have been in place to expedite discharge in nine wards. The Discharge Assistants in these nine wards: are ward-based which means they go around the ward talking to patients and families (the contact with family members is often by telephone) deal with any aspect of discharge for all patients, not just those requiring complex discharge arrangements work regular hours from Monday to Friday so can track the patient’s progress from admission to discharge refer patients to social services (Norfolk Community Services) liaise with any agencies that can help provide post-hospital support e.g. the hospital discharge team, Pharmacy staff and the Red Cross (who can offer social care support). chase up outstanding TTOs (medicines to take home) attend the daily multi-disciplinary meetings on the ward and therefore crucially can communicate with other professionals.
In addition QEH is providing a once-a-week telephone helpline for post-operation queries for those patients who have undergone day surgery (i.e. no overnight stay involved); and are piloting a similar idea for patients leaving the Women’s (Surgery) ward. We think this is an excellent initiative as it would help reassure patients; and would recommend this to the NNUH & JPUH to consider putting in place.
Five wards however do not have Discharge Planning Assistants although a Discharge Planning Assistant is designated to monitor those patients residing in wards that are not of their speciality (medical outliers). We were told that patients in one of these wards already receive specialised care (from the Palliative Care and MacMillan teams); and that the other four wards are characterised by straightforward discharges so were less in need of a discharge planning assistant – although any delay or need for complex care should trigger intervention from the discharge team.
However, a ‘straightforward case’ can easily become a ‘complex’ one with implications for discharge planning and we were well aware, from the research conducted two years ago, that even a ‘straightforward’ discharge (from the perspective of the hospital) often resulted in delays and inconvenience to the patient through poor communication and doctors’ note, TTOs etc not being ready in time. The whole point of LINk recommendation 1 is that the discharge planning, and process, for ALL patients is embedded in one system so that all eventualities are catered for.
Norfolk Local Involvement Network (LINk) 06/10/2011 7
Also the emphasis (as with NNUH and JPUH) appears to be still on expediting a smooth discharge process from the perspective of managing numbers – the patient flow in and out of hospital – rather than the patient/family experience of hospital discharge. The explanation given for the decision not to appoint planning assistants to a few wards because discharges from these are ‘straightforward’ underlies our impression that this is the case.
However, based on what we were told, it is conceivable that discharge planning assistants are contributing to an improved patient/family experience of hospital discharge although there is, as yet, no evidence base. The 2010-2011 Care Quality Commission’s (CQC) survey findings is a salutary warning to the hospital that communication with patients and families about their care and discharge should continue to be a top priority. QEH’s 2010-2011 Quality Account states that the report highlighted two out of four areas as needing improvement and these were around discharge and patient information: •’Doctors and nurses not providing information to patients' families in relation to how they accessed help to care for the family member.’ • ‘Letters given to patients about their treatment/condition are not easily understood’
LINk requests: QEH discharge planning assistants provide contact details to patients and family members so that the latter can contact them for more information.
We assume that Ward Sisters or Charge sisters are still the main point of contact for patients on the four other wards and ask that patients and their families are made aware on pre-admission (electives) and on admission (emergencies) about who they should turn to for information not just around discharge matters but also about their progress and care.
Norfolk Local Involvement Network (LINk) 06/10/2011 8 2.3.2 Other QEH-related issues
From LINk’s 2010 report The responsibility for acquiring an intermediate care bed lies now only with QEH (previously shared with PCT discharge team); and there is only one referral form for assessment rather than two forms.
In relation to delays to transfers of care, an item that is not the primary focus of our attention, QEH staff raised their concerns about 1. inability to access vacant community hospital beds in West Norfolk (because of adherence to ‘single gender wards’ rule) 2. accommodation on wards beds based in North Norfolk are not popular because of distance from family home and lack of transport and consequently any new commissioning should look at buying beds in West Norfolk 3. the inability to admit patients into a community hospital in the West on Fridays after 2pm (and 4pm at one hospital); and no admissions on weekends or bank holidays (with the exception of Swaffham hospital who sometimes admit on Sundays) 4. a built-in delay to discharging patients to Swaffham Hospital if patients live outside post code area because the patients then need to be ‘adopted’ by a local GP before hospital can admit.
We will pass the above to commissioners, Norfolk Community Health Care and the Scrutiny Committee’s Intermediate Care Monitoring Working Group for their information and action if necessary.
Norfolk Local Involvement Network (LINk) 06/10/2011 9
3. Update on social care support in hospitals
Since November 2010 a new system of accessing social care was implemented in all three acute hospitals. This comprises an existing but re-modelled team of hospital-based qualified social workers who assess and organise care for patients with moderate to complex care needs a new team of assistant practitioners led by a Team Manager, a Practice Consultant grade social worker and a social worker were re-located from the existing Integrated Discharge Teams to form the new Norfolk Care Connect (NCC) Hospitals team. Assistant Practitioners are trained to assess straightforward to moderately complex social care needs (as they are not qualified social workers). Crucially this is done predominantly via telephone conversations with the patient, carer, family or staff. If a patient has relatively non-complex needs but a communication difficulty makes a telephone assessment inappropriate, CareConnect staff will carry out a face-to-face assessment. (Please note that there is some delay to a full transition at JPUH because of ICT issues (the Suffolk Care First client database)).
It was envisaged by Norfolk Community Services that soon after NCC was up and running in hospitals, the number of hospital-based social workers would be reduced. We are pleased to hear that this decision has been revised so that the number of hospital social workers will remain the same until possibly some time next year. This will give staff time to get used to the system and to iron out any inconsistencies or problems.
NCC has provided us with the findings of both the qualitative (15 responses to a questionnaire) and quantitative audits (from January to August 2011) of the new social care support system in hospitals. Overall the system is apparently working well with delays in straightforward discharge reduced (from roughly about 3 days to 1½ days) time taken to complete assessments for straightforward ward referrals dramatically reduced gradual decline in the number of significant delays in transfers of care (although there was short-term spike in August).
Since NCC teams have been on site, hospital referrals to the social care support teams (for moderate to complex care) at both the JPUH and NNUH have dropped, while those to QEH have risen. NCC hope to work with QEH’s ward staff to identify if and how complex referrals can be reduced in number; and how the NCC team can assess referrals more quickly. They are also looking at improving the situation at all 3 hospitals around: variations in time from referral to action by NCC
Norfolk Local Involvement Network (LINk) 06/10/2011 10 a significant minority (25%) of patients with non-complex needs had not been involved in the discussions around their care although family members and staff had been talked to over the telephone (something LINk was concerned to hear about). They are hoping to tackle the latter by looking into improving access to telephones by bedsides and training assistant practitioners to actively pursue direct contact with patients. Further work is to be done with healthcare staff so that the Care Connect telephone-based assessment method is embedded in hospitals.
LINk has expressed concerns from the outset that a telephone-based assessment system would not be appropriate for patients who are vulnerable, fragile, and very ill or have a learning difficulty or mental health concern: “an over-reliance on telephone conversations may not inform the social worker about the real state of affairs surrounding a few patients” (LINk report to NHOSC, 25.11.2010).
Our reservations were unfortunately strengthened by a few experiences passed to us in July and August 2011 from one member of the public and from representatives of Voluntary Organisations Working in Neurology (VOWNet), who represent service users with various neurological conditions such as Parkinsons disease. There were concerns about: how a telephone conversation between a person with an acquired brain injury and a NCC operator resulted in inaccurate answers being given because the questions were misunderstood by the service user; someone else with a similar condition felt stressed and confused because a letter from NCC asked the service user to get in touch urgently to re-start a care package but did not include the direct telephone number and the absence of a care package for a patient leaving the NNUH (whose daughter contacted the LINk Host). These issues have been passed to NCC. The Interim Head of NCC is taking practical and immediate steps to improve the situation regarding the above examples and we feel assured that several of the concerns raised will be tackled.
NCC were very supportive of the LINk idea of a key worker as this would mean a single, identifiable point of contact for NCC staff who currently have to engage with several hospital staff to obtain information relating to the patient and therefore delays a speedier discharge from hospital.
Norfolk Local Involvement Network (LINk) 06/10/2011 11 4. Other concerns around hospital discharge
1. Integrated care This committee received a report in April 2011about the 6 integrated care pilots in Norfolk. We have nothing further to report on this except that apparently a successful ‘hospital at home’ scheme in West Norfolk (relating to a community intravenous therapy team) is currently being limited in its scope and is having an impact on bed occupancy at QEH. LINk will pass this information on to NHS Norfolk and the participants of the integrated care pilots in West Norfolk.
2. Provision for patients with mental health concerns and frequent hospital attendees There is a Mental Health Liaison Team based at the NNUH who work Mondays to Fridays, from 9am to 5pm. There is also a Crisis Resolution Home Team, based at Hellesdon Hospital (supporting the City and the County) who deal with referrals from the NNUH for patients with mental health concerns. This team is available 24 hours a day, 7 days a week. Despite this, we are aware that on weekends and bank holidays, NNUH encounters considerable difficulty in discharging patients with mental health conditions to a non-acute setting or with appropriate support.
A similar situation at the QEH is fortunately being eased because the Norfolk & Waveney Mental Health Trust have recently employed a Psychiatric Liaison Nurse to work at A&E for 10 hours a day, seven days a week. We suggest a similar set-up for the NNUH specifically perhaps for weekends and bank holidays; or alternatively for all parties concerned to urgently look into the matter (i.e. the mental health trust, NNUH and NHS Norfolk as the commissioners).
There is also an ongoing problem at the NNUH with a few frequent attendees who may have mental health issues, a personality disorder or are homeless. This appears to be an occurrence that is happening in other hospitals around the country. We think that having a Psychiatric Liaison Nurse employed at weekends and bank holidays would be helpful both for the patient and other patients as he or she would receive appropriate assistance and would not take up a bed intended for a patient with an acute need.
Norfolk Local Involvement Network (LINk) 06/10/2011 12 5. Conclusion
We are pleased to conclude LINk’s discharge project on the note that all three hospitals have continued to review and improve their discharge practices.
With all three hospitals, however, the focus remains on improving communication and discharge for those patients with moderate to complex care needs and consequently we feel that the vast majority of patients with lesser care needs, or who are seen as ‘straightforward’ discharges, will continue to be ‘missed out’ unless a key, named worker is in place.
As we noted earlier, discharge planning and processes for ALL patients needs to be embedded in one system. Although the three hospitals ‘signed up’ to this in their agreement with HOSC we are still not convinced that they accept the principle. In our discussions we have rarely encountered any specific objections and yet the goal remains frustratingly distant.
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Report written by Norfolk LINk – Hospital Discharge Monitoring Team:
Terry Allen (LINk member) Morag Skinner (LINk member) Margaret Young (LINk member) and Carole Ponniah (Facilitator, LINk Host)
13.10.2011
We would like to thank all the staff who have talked to us and particularly staff at the NNUH who have involved us in their work.
Norfolk Local Involvement Network (LINk) 06/10/2011 13 Appendix 1- Summary of requests and suggestions
To:
NNUH – as LINk members are closely involved with the hospital’s discharge committees, members will continue to influence the provider through these channels.
JPUH 1. Raising the profile of Case Managers with patients and families in the wards. Can the JPUH representative inform the committee today if this has been agreed and how it will be implemented? 2. Suggest that Case Managers receive formal training; and the way discharge process is administered is regularly communicated/updated to all staff in the ‘frontline’ i.e. ward staff, therapists, social care and mental health teams, doctors and consultants, and pharmacists.
NNUH & JPUHH – Depending on budgets, consider installing a once-a-week telephone helpline for post-operation queries for the specialism that has a high demand or post-operative complications. Please contact QEH for details.
QEH 1. Ask discharge planning assistants, as a matter of course, to provide their contact details to patients and family members. 2. Ask Ward Sisters (or Charge Sisters) and their teams to make patients and families aware on admission (electives (need to be reminded) and emergency admissions) about who (e.g. a named staff member where ward has no discharge assistant or discharge assistant) they should turn to for discharge information.
NHS Norfolk, Norfolk Community Health Care (NCHC) and NHOSC (Intermediate Care Monitoring Working Group – for information only) Ask NHS Norfolk and NCHC to investigate concerns raised around intermediate care provision in West Norfolk (see 2.3.2 above).
NHS Norfolk, Norfolk & Waveney Mental Health Trust and NNUH Look into providing a Psychiatric Liaison Nurse cover for NNUH’s A&E over weekends and Bank Holidays; or investigate how situation can be improved for patients with mental health issues, including for ‘frequent attendees’ such as the homeless or those presenting with a personality disorder. LINk observation: There is a lack of clarity about procedures to deal with such patients at NNUH; and that a constructive working relationship between staff of hospital and mental health trust is required.
Norfolk Local Involvement Network (LINk) 06/10/2011 14 Norfolk Health Overview and Scrutiny Committee 13 October 2011 Item no 10
Norfolk Health Overview and Scrutiny Committee
ACTION REQUIRED Members are asked to suggest issues for the forward work programme that they would like to bring to the committee’s attention. Members are also asked to consider the current forward work programme:- whether there are topics to be added or deleted, postponed or brought forward; to agree the briefings, scrutiny topics and dates below.
Proposed Forward Work Programme 2011-12
Meeting Briefings/Main scrutiny topic/initial review of Administrative dates topics/follow-ups business 2011-12 24 Nov 2011 Quality, Innovation, Productivity and Prevention (QIPP) – an update on changes and developments to local services as a result of NHS Norfolk’s QIPP programme.
Intermediate Care Implementation Monitoring Group – progress report.
Mental Health Trusts Merger – Monitor’s decision is due Agenda or by September 2011. An update in the Briefing if the Briefing merger is to go ahead in line with the last report to NHOSC or report to Committee if the merger is refused.
19 Jan 2012 Children’s Autism Services – potential date for report Dependent on back to Committee on the recommendations of the NHOSC report received on 13 October 2011. endorsement of working group report 13/10/11 Mar 2012 Integration of service delivery (Integrated Care Pilot) – Director of Locality Development to update the Committee on the results of the national evaluation of the Integrated Care Pilots and explain how implementing this model across the county has progressed since April 2011.
NOTE: These items are provisional only. The OSC reserves the right to reschedule this draft timetable.
Provisional dates for update / briefing reports to the Committee 2012
April 2012 – Dementia Services – Norfolk and Waveney Mental Health NHS Foundation Trust and NHS Norfolk to report on progress with developing dementia services (including assessment bed usage statistics and information on outreach services including Cognitive Stimulation Therapy) and focusing on new developments, particularly in the education and training of those caring for people with dementia, improvement in the rate of diagnosis and the referral pathway.
April 2012 – Respite service for adults with learning difficulties- report from the Learning Difficulties pooled fund commissioners on re-provision for users of 3 Mill Close, Aylsham.
Scrutiny being done by working groups of NHOSC
Intermediate Care – implementation monitoring group – due to bring a progress report to NHOSC on 24 November 2011 Membership:- Cllrs Nigel Legg (Chairman), John Bracey, David Bradford, David Harrison, Shirley Weymouth (Vice Chairman) & Tony Cowles (Norfolk LINK Transition)
Children’s Autism Services – task and finish group – due to report to NHOSC on 13 October 2011. Membership:- Cllrs David Harrison (Chairman), Michael Chenery of Horsbrugh (Vice Chairman), Garry Sandell, Shirley Weymouth. Norfolk LINk Transition – Anthony Darwood – co-opted (non voting) member. John Labouchere – co-opted (non voting) lay member (former Member of NHOSC, until 5 May 2011).
NHOSC Members on Regional Joint Scrutiny Committees (task & finish basis)
Joint Committee (task & NHOSC Membership Progress finish) Cancer Services (17 – 24 age Cllr Tony Wright The Specialised group), Eastern Region Commissioning Group is waiting for the outcomes of a national consultation on cancer services for teenagers before launching a consultation on regional proposals. The regional one is likely to start after October 2011.
NHOSC Members co-opted to Norfolk LINk Transition Working Groups
Older People’s Health and Social Care – Shirley Weymouth (from Jan 2010), (substitute – Michael Chenery of Horsbrugh)
James Paget Hospital – Acute Services – Shirley Weymouth (from July 2010)
Adult Mental Health – Michael Chenery of Horsbrugh (from July 2010)
NHOSC Members appointed to or attending NHS/CQC reference groups
Norfolk & Suffolk mental health trusts proposed merger – reference group – Michael Chenery of Horsbrugh appointed 14 October 2010.
Care Quality Commission – sounding board – Steven Dorrington