Tony Holland

1. The future of services for people with learning disabilities who have offended post the Winterbourne View Report Tony Holland Cambridge Intellectual and Developmental Disabilities Research Group and NIHR CLAHRC for Cambridgeshire and Peterborough

2. Outline • Winterbourne View • What happened • What is now happening • What are the main lessons • In-patient services • Local services • What is required of ‘hospital services’ • What is required of ‘community services’

3. Sequence of events • Panorama investigation at WV May 2011 • WV hospital closes June 2011 • Interim report (D of H) June 2012 • Independent serious case review August 2012 • CQC inspected 150 LD hospitals and homes • Criminal proceedings -11 prosecuted and sentenced – August 2012 • Castlebeck Care under receivership March 2013

4. Winterbourne View hospital • Independent hospital owned by Castlebeck Care Ltd – opened 5 years ago • For the purpose of assessment and treatment and rehabilitation of people with LD • 24 places 73% detained under the MHA • On average cost £3500 per week • 48 patients referred to WV by 14 different LAs – 13 within 20 miles, 12 between 20 to 40 miles, 14 between 40 to 120, and 9 > 120 miles • Nearly 50% referred because of a crisis – average length of stay 19 months, some for 3 years at time of closure • Very high number of recorded interventions, numerous safeguarding alerts

5. Key points from review • Patients at WV not listened to • No one organisation, such as South Gloucestershire Council, had lead responsibility; • Serious failure of management, high staff turnover, lack of leadership; • Opportunities missed by Managers of WV, Local services, CQC, MHA commissioner, Police, A & E; • Whistleblower not listened to – and so on..

6. The message of Winterbourne ViewA failure of local services • Local services are failing some children and adults with LD and complex needs; • Local services need to be able to respond appropriately when someone with a LD presents with challenging behaviour; • Out-of-area placements need to be avoided • Away from families and familiar environments • Quality of care cannot easily be monitored • Re-settlement back in area problematic • Expensive and very difficult to control costs • All services for people with LD need to have strategies in place that minimise the risk of challenging behaviour • All services need to have access to the necessary expertise for this to happen

7. Other issues • Pooled budgets • Services for children • Community is the norm for all of us – there needs to be a clear reason for admission • Need for continuing relationship with hospital when admission is genuinely needed in order to ensure questions are addressed and discharge is planned; • Review of care plans – family involvement

8. What is happening? • Government mandate to the NHS Commissioning Board to work with LAs to ensure every person with an LD receives safe, appropriate and high quality care etc • A program of action to transform services so that people no longer live inappropriately in hospital but are cared for in line with best practice.. Action • Department of Health Implementation Group established 2013 • Every service will be asked to review those people with LD presently in hospital placements to be completed June 2013 – anyone inappropriately supported moved no later than June 2014; • To work with CCG and LAs to ensure the necessary local services are in place – by April 2014 each area locally agreed joint plan • CQC strengthen inspections • Concordat agreement to achieve fundamental change (RCPsych) • Re-evaluate outcomes

9. What are the messages for ‘out-of-area’ IP services? • Your work is under close scrutiny • You need to be clear what is it that you offer that is both required and generally not provided at a local level • If someone is placed in a hospital placement away from their home there must be a clear purpose and justification • You must establish and maintain a close working relationship with local services

10. What are the messages for local services? • What should local services be able to do? • What should local services look like? • How should local services function? • Test your service by asking – how would the service respond in this situation?

11. People with LD • Complex, varied group – majority with life long support and communication needs; • Health inequalities - different pattern of causes of death and illness; • Mental health and challenging behaviour • Malnutrition, aspiration, choking, etc • Epilepsy • Syndrome-related • The importance of the interface between health and social support.

12. Some examples • A man with autism and severe learning disabilities aged 23 recently moved from the family home now engages in aggressive and self-injurious behaviour. • A man with Prader-Willi Syndrome severely damages property following a temper outburst – the police are called – staff at his home refuse to work with him..

13. Some examples • A man with mild learning disabilities is said to be a risk to others following an allegation of a sexual assault on another service user. • A women with moderate learning disabilities becomes aggressive towards the public saying that people are being rude about her – she has become tearful and withdrawn.

14. Questions? • With each of these examples: • do you have the expertise to respond to these potentially complex needs in your area? • where does such expertise ‘sit’? • how readily available is this expertise to those who need it?

15. Key points • Meeting complex needs can be complex! • Needs the necessary skills and services structures in place • It needs partnerships between key stakeholders: • People with LD and their families • Those providing social support (support living/residential) • General practice and other health services • Specialist community teams for children/adults with LD • It requires: • understanding of the individual and the context within which they live • the application of accepted and tested models of understanding and intervention

16. What response is required? • When someone presents with challenging behaviour what is required: • The ability to identify the developmental, biological, psychological and social factors that might predispose to, precipitate, and maintain such behaviours; • To develop an understanding of that individual within the context of established models of understanding that are based on empirical research; • To develop and apply interventions in partnership with the different stakeholders and determine outcomes.

17. What do we need to do after Winterbourne View • To ensure we have the local services and expertise in place to be able to respond to the needs of people with LD who present with complex difficulties such as challenging behaviour; • To be committed to, and have the ability to support, people with complex needs locally; • To support the necessary positive partnerships between different agencies that acknowledges the different cultures and roles of different organisations within the network of services (emphasis on partnerships!) • This is not fundamentally about money, it is about vision and commitment – a place at WV cost £3000+ per week! • What should the services look like and what should it do?

18. Specialist adult LD services The Cambridgeshire LDP (established in 2001) • The commissioning of day and support services • Residential care • Supported living (personal budgets) • Supported employment, social firms etc • Managing the community teams for adults with LD • Care co-ordination • Specialist health support (employed by CPFT*) Two in-patient services (mental health) (Cambridge and Peterborough) directly managed by CPFT *CPFT Cambridge and Peterborough Foundation NHS Trust

19. Function of specialist LD services • To provide care management and specialist health support to meet specific needs of people with LD – interface with various stakeholders and particularly supporting primary care • Access to generic services • Health screening • Safeguarding • Advice (employment, social support, specific health etc) • To enable access to social support (eligibility criteria) • To support people with LD and their families and those that provide support with respect to: • Total communication environments • Skills development • Sexuality and other matters relating to adult life

20. Function of specialist LD services • Specific focussed roles: • Mental health and challenging behaviour • Assistance with eating and drinking (aspiration, choking, malnutrition etc) • Assessment and treatment of severe epilepsy (in collaboration with neurology services) • Matters relating to offending and the CJS

21. SPECIALIST SERVICES FOR ADULTS WITH LD STRUCTURES (CAMBRIDGESHIRE LDP) Social support providers People with LD, families and others who support them City, East, Fenland, Huntingdon, South General Practice and primary care services Generic secondary care services Five integrated community teams for adults with LD Two intensive Assessment and Support Service (IASS) (in-patient) Intensive Assessment and Support Service (IASS) (community) Cambridge Peterborough Regional secure services Norwich

22. Map of Cambridgeshire Area Estimated population of Cambridgeshire in 2011 (aged 18-64): 619,400** Estimated number of people with an ID: 12,388* And the number known to local services: 2,849* **Projecting Adult Needs and Service Information (PANSI) www.pansi.org.uk Team base Emerson & Hatton (2004)* showed that roughly 20 people in every thousand have an ID. 4.6 of these are likely to be known to local health and social services, but these numbers vary with age. Fenland Huntingdonshire East Cambridgeshire Cambridge City South Cambridgeshire

23. Other issuesWhere does the expertise for this sit? • Interventions in childhood aimed at improving long term outcomes • Education • Children’s services (family support) • CAMHS • Children’s Disability Team • Interventions in services aimed at minimising the risk of challenging behaviour (prevention) • Physical and mental health • Structure and informed support • Communication strategies including visual timetables etc etc

24. Design The need for an agreed vision as to what the service is there to do; A recognition of the complexity and relational aspects of care and that good health and social support are closely linked; A recognition of the practice and cultural differences between health and the LA and a partnership between agencies to address these issues

25. Key messages for LD services post WV • People with LD may engage in challenging behaviour, this will be for varied reasons. May result in contact with the CJS; • There must be local capacity to respond to such behaviour through providing expertise to people with LD & local social support providers; • Local capacity must ensure the ability to respond in different settings and circumstances and must include the skills of various disciplines reflecting the varied and complex reasons that lead to such behaviour and to its continuation over time. • Local community teams who provide that response need access to other resources in order to meet the range of short-term and longer need. Possibly the following: • Local, small, expert, IP facility • Additional ‘intensive’ team • Quality support providers

26. Questions? To what extent do these issues reflect your experience in the service you work in? Is there a convincing case for specialist services for adults with LD – if not, what are the alternatives? If yes – do you agree with the proposed tasks for the teams? What should a specialist service look like? Would your service be able to respond to the range of clinical demands to be expected?