1. Annual Norwegian Early Intervention Conference September 2 nd 2008 The NIMHE National Early Intervention in Psychosis (EIP) Programme: The Development of EIP in the UK Dr Jo Smith and Dr David Shiers NIMHE Joint National Early Intervention Programme Leads

3. An English picture The needs of families coping with early psychosis EI development in the UK What triggered its development? Where has it got to? Are we here yet? Lessons learnt?

5. Treatment delays 12-18m Crisis response the rule: - 80% hospital admission - 45% police involved - 50% mental health act - Hugely traumatic GPs are key pathway players Families concerns ignored 50% lost to follow-up at 12m Danger 10% lifetime suicide risk (2/3 in first 5yrs) Was this story unique?

6. …marooned to some backwater? Stagnation in pessimistic service Relapse and remission Dis-ease Stigma & social exclusion Unfulfilled lives …cant get a job, cant get a girlfriend, cant get a telly, cant get nothing… its just everything falls down into a big pit and you cant get out… Hirschfeld, 2002 …our overwhelming feeling was of an opportunity missed - to what degree she has been needlessly disabled by those first four years of care well never know Mother 2002

7. Does it have to be like this? St Vicenzo in Northern Italy – 1989 a model of health improvement. WHO declaration that transformed diabetes care –Transformational outcomes –Attract good practice –Raise expectations of consumers IRIS + Rethink political pressure in UK Early Psychosis Declaration: key outcomes for young people with first episode psychosis and their families

8. STIGMA & PREJUDICE DELAYS COERCION ISOLATED ISOLATED & IGNORED FAMILIES PESSMISTIC SERVICES SOCIALEXCLUSION DISSATISFACTION

9. RAISE COMMUNITY AWARENESS AWARENESS IMPROVE ACCESS & ENGAGEMENT ENGAGE AND SUPPORT SUPPORTFAMILIES TEACHPRACTITIONER& COMMUNITY WORKERS PROMOTE RECOVERY AND ORDINARY LIVES EARLY PSYCHOSIS DECLARATION

10. BLACK BOX 90% satisfied with employment, educational, social attainments Suicide rates less than 1% 90% of families feel respected and valued as partners in care Consumers confident that generalists + specialists can deal effectively with early psychosis Duration of Untreated Psychosis less than 3 m The use of involuntary treatment less than 25% First contact with families or other supporters within a week All 15 year olds able to understand and know how to seek help re psychosis. Effective treatment after no more than 3 attempts to seek help

11. Early Psychosis Declaration We need committed people, we need good-will people, we need grass-roots people. …this is a task for us all, each one with their possibilities and capabilities, but all together A collaboration between NIMHE / Rethink, IRIS, the World Health Organisation and the International Early Psychosis Association

12. It doesnt have to be like this Early intervention in Psychosis is a paradigm of care for young people with a first episode psychosis and their families based on research and comprises three concepts: 1.Early detection of psychosis 2.Reduce the long duration of untreated psychosis 3.Importance of the first 3-5 years following onset (critical period) for later biological, psychological and social outcomes

13. Early Intervention Service Aims Provide information Offer support to families Provide pharmacological, psychological and social interventions to support recovery in the least stigmatising and restrictive settings Prevent development of secondary problems such as depression and suicide Prevent further episodes Liaise with education, work, health, youth and community support agencies to support return to social, educational and work functioning

14. Initial Policy support… NSF Adult Mental Health (1999) Early intervention in psychosis first appears as a policy commitment NHS National Plan (DoH 2000): By 2004, all young people who experience a first episode psychosis will receive early and intensive support Planning and Priorities Framework (2003-2006) oDUP less than 3 months oSupport for first 3 years CAMHS Target and Childrens NSF (DoH 2003) Comprehensive EI services by 2006

15. Early Intervention Policy Implementation Guide (PIG) Criteria Intervention over 3 years Accessible to 14 to 35 years old Active monitoring of individuals at high risk of psychosis or with suspected psychosis for a minimum of 6 months Caseloads of 15 cases per case manager Multidisciplinary staff mix with specialist skills/experience in work with adolescents, family intervention, low dose medication, CBT, relapse prevention and substance misuse interventions Systems in place to cover out of hours and weekends Strategy for early detection and engagement of high risk and suspected psychosis cases Monitors Duration of Untreated Psychosis, engagement rates, relapse rates, hospital readmission, suicide and parasuicide, education and employment functioning.

16. NIMHE/Rethink National EI Programme Early Psychosis Declaration at its heart Infrastructure to support EI implementation: regional networks, tools and resources Provide leadership; Navigate obstacles

17. Early Psychosis Declaration Regional hothouses to address aspects of EPD: e.g. –Support the voice of young users and families –Encourage local partnerships necessary to deliver service change to local communities Schools: On the Edge drama production and Back from the Edge educational pack EPD self assessment toolkit EI as a social movement –Evaluation of the National EI Programme –Link to NHS Institute

18. Establish a sound infrastructure to support EI implementation Knowledge management: –EI knowledge community –Framework for research dissemination, practice exchange and training National EI Service Mapping exercise Establish regional EI networks, tools and resources –Conduit for feedback between EI networks and DH centre –EI Training CD rom –Practice guidance papers Promote Primary Care pathways –Competency for EI in new RCGP curriculum –White Water Rafting service redesign tool –Early detection guidance and toolkit

19. Provide leadership Profile and prioritise EI on national policy agendas Ensure continuation / consolidation of investment in EI by challenging disinvestment Profile EI services in national documents eg 10 High Impact Changes National research seminars to profile current UK EI research Establish international profile for EI development in the UK at IEPA and other international conferences, international collaboration on research and practice tools

20. Inner rage… IRIS Guidelines big idea Policy NIMHE/Rethink EI development programme Implement the declaration EI service development in the UK From counting teams… To counting cases… To counting outcomes St Vincents Model Launch of Newcastle Declaration From margin to mainstream: From margin to mainstream: intensification Secure IEPA and WHO Support First episode research First EIS EPPIC off the ground beyond illness to health 1986 / 1992 1995 / 1999 2002 2004 2008/9 International Early Psychosis Declaration get organised Changing practice… NSFNSF

21. From Counting Teams…

22. Sig.Growth in EI Teams Nationally… London MiData set illustration (Fisher et al 2007) 20052007

23. To Counting Cases…

24. Continuing Policy Support… DH EI Recovery Plan 2006/7 (DH 2006) oOriginal 2003-2006 trajectories to provide EI to 22,500 patients by December 2006 was off-course oEI Recovery Plan to provide EI to 7500 new patients in 06/07 – to put EI development back on target 2007/8 NHS operating framework: …continuing priority...so that EI services in place in all areas. 2008/9 NHS operating framework: EI still there

25. Early Intervention Provision across England (year end caseload figures) 2 teams 24 teams 41 teams 109 teams 127 teams 160 teams 145 services

26. Reflection on the Status Quo Simply commissioning EI teams and meeting caseload targets are necessary enablers but not sufficient in themselves… …its the quality of service provision that really makes the difference

27. To Counting Outcomes…

28. Clinical Effectiveness Outcome Data from Worcestershire EIS (Smith, 2006) Duration of untreated psychosis National 12-18m EIS (3y) 2003-6 n=78 5-6m % admitted in FEP 80%41% % FEP using MHA 50%27% Readmission 50% 27.6% % engaged @ 12m 50%100% (79% well engaged) Family involved satisfied 49% 56% 91% 71% Employed 8-18%55% Suicide attempted completed 48%21% 0%

29. UK and International EI outcomes Research EarIy Intervention: –London Mi-Data pan-London research network –First Episode Research Network (FERN) –EDEN and National EDEN –PSYGRID Early detection: -EDIE and EDIE2 trial -EDIT -REDIRECT Burgeoning international evidence base: (eg. Addington, 2007, McGorry 2007)

30. Invest to Save Argument: EI Cost Economic Data (McCrone, Dhanasari, Knapp 2007)

31. Paying the Price The cost of mental health care in England to 2026 Early intervention services for psychosis have also demonstrated their effectiveness in helping to reduce costs and demands on mental health services in the medium to long- term, and should be extended to provide care for people as soon as their illness emerges. McCrone P, Dhanasiri S, Patel A, Knapp M, Lawton-Smith S Kings Fund 2008

32. Potential Savings from Expanding EI services in England over next 20 years Paying the Price The cost of mental health care in England to 2026 McCrone P, Dhanasiri S, Patel A, Knapp M, Lawton-Smith S Kings Fund 2008 National Coverage by EI teams Assumes 50% coverage in 2008 100% coverage 90% coverage 80% coverage 70% coverage 60% coverage £5000 saved per case/year with EI teams 5,500 new cases of Schizophrenia/ year (Fearon et al, 2006) Annual national savings (£ Million) Similar pattern with Bipolar Disorder

33. Challenges beyond current UK EI policy…

34. Typical Course of Psychosis (Larsen et al 2001) premorbid phasevery early symptomspsychotic symptoms Adolescence to Adulthood Psychosis Treatment & RecoveryRelapse? DUP Early Detection & Intervention in the at- risk mental state (ARMS) phase (Early Detection) Early Intervention after onset of psychosis (EI) Maintaining outcomes beyond EI service involvement:

35. Equality Issues and Outcomes BME communities Access for all 14-35 year olds with a FEP Women with FEP Young Offenders Individuals with dual diagnoses

36. Victoria (Aus) Burden of Disease Study: Incident Years Lived with Disability rates per 1000 population by mental disorder FEP typically commences in young people: as do many of the more serious mental disorders

37. Youth Health Services weakest when they need to be strongest The issue CAMHS / adult interface and transition issues – service centred rather than person centred We need Partnerships with youth agencies to develop comprehensive youth focussed services Young peoples inpatient care and crisis provision Youth sensitive service provision Extend the EI Paradigm to other mental health disorders that have their onset in youth

38. What have we learnt…

39. Inner rage… IRIS Guidelines big idea Policy NIMHE EI development programme Implement the declaration EI service development in the UK From counting teams… To counting cases… To counting outcomes St Vincents Model Launch of Newcastle Declaration From margin to mainstream: From margin to mainstream: intensification Secure IEPA and WHO Support First episode research First EIS EPPIC off the ground beyond illness to health 1986 / 1992 1995 / 1999 2002 2004 2008/9 International Early Psychosis Declaration get organised …beyond policy and a National EI Programme NSFNSF

40. People change what they do less because they are given analysis that shifts their thinking than because they are shown a truth that influences their feelings. (J P Kotter, The Heart of Change, 2002)

41. Encourage others to see EI: –not as a PROBLEM demanding ever more scarce resources –but as an ANSWER by demonstrating better use of resources Use and harness three VECTORS of policy, research and service/practice development to support and progress EI development Highlight injustice and encourage a social movement approach

42. Driven by informal systems: structures consolidate, stabilise and institutionalise emergent direction Driven by formal systems change: structures (roles, institutions) lead the change process People change themselves and each other - peer to peer Change is done to people or with them - leaders & followers Insists change needs opposition - it is the friend not enemy of change Talks about overcoming resistance There may well be personal costs involved Change is driven by an appeal to the whats in it for me Moving peopleMotivating people Change is about releasing energy and is largely self-directing (bottom up) A planned programme of change with goals and milestones (centrally led) Social movements approachProject/ programme approach

43. You dont need an engine when you have wind in your sails Paul Bate 2004