Dr Jo Smith and Dr David Shiers NIMHE Joint National Early Intervention Programme Leads

1. Annual Norwegian Early Intervention ConferenceSeptember 2nd 2008The 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. Was this story unique? Families’ concerns ignored 50% lost to follow-up at 12m Danger 10% lifetime suicide risk (2/3 in first 5yrs) 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

6. …marooned to some backwater? “…our overwhelming feeling was of an opportunity missed - to what degree she has been needlessly disabled by those first four years of care we’ll never know” Mother 2002 • Stagnation in pessimistic service • Relapse and remission • Dis-ease • Stigma & social exclusion • Unfulfilled lives “…can’t get a job, can’t get a girlfriend, can’t get a telly, can’t get nothing… it’s just everything falls down into a big pit and you can’t get out…” Hirschfeld, 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. DELAYS COERCION STIGMA & PREJUDICE DISSATISFACTION SOCIAL EXCLUSION PESSMISTICSERVICES ISOLATED & IGNORED FAMILIES

9. IMPROVE ACCESS & ENGAGEMENT RAISE COMMUNITY AWARENESS EARLY PSYCHOSIS DECLARATION PROMOTE RECOVERY AND ORDINARY LIVES TEACH PRACTITIONER & COMMUNITYWORKERS ENGAGE AND SUPPORT FAMILIES

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

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 doesn’t 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: • Early detection of psychosis • Reduce the long duration of untreated psychosis • 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) • DUP less than 3 months • Support 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 hothousesto 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 Mappingexercise • 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. Changing practice… From margin to mainstream: intensification St Vincents Model Launch of Newcastle Declaration NIMHE/Rethink EI development programme Implement the declaration N S F Inner rage… IRIS Guidelines ‘big idea’ Policy EI service development in the UK From counting teams… To counting cases… To counting outcomes First episode research First EIS EPPIC International Early Psychosis Declaration Secure IEPA and WHO Support off the ground get organised beyond illness to health 1986 / 1992 1995 / 1999 2002 2004 2008/9

21. From Counting Teams…

22. Sig.Growth in EI Teams Nationally…London MiData set illustration(Fisher et al 2007) 2005 2007

23. To Counting Cases…

24. Continuing Policy Support… • DH EI Recovery Plan 2006/7 (DH 2006) • Original 2003-2006 trajectoriesto provide EI to 22,500 patients by December 2006 was off-course • EI Recovery Planto 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 41teams 109 teams 127 teams160 teams 145services

26. Reflection on the Status Quo Simply commissioning EI teams and meeting caseload targets arenecessary 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)

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 McCrone P, Dhanasiri S, Patel A, Knapp M, Lawton-Smith S Kings Fund 2008 “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.”

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

33. Challenges beyond current UK EI policy…

34. TypicalCourse ofPsychosis (Larsen et al 2001) Early Detection & Interventionin the ‘at-risk mental state’ (ARMS) phase (Early Detection) Early Intervention after onset of psychosis (EI) Psychosis Maintaining outcomes beyond EI service involvement: “DUP” premorbid phase very early symptoms psychotic symptoms Treatment & Recovery Relapse? Adolescence to Adulthood

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

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

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

43. You don’t need an engine when you have wind in your sailsPaul Bate 2004