1. Early psychosis: a journey into uncharted waters? A primary care view David Shiers Mo Vaillancourt Rory Byrne Royal Soc Medicine Workshop early detection of psychosis. Sept 16 th 2008

2. Views from some young people attending the EDIT service you can’t even sleep at night, just there thinking someone is going to come, I thought I was in a movie, I’m dreaming, but it’s not a dream I don’t feel close to anyone. I don’t properly fit in anywhere. Alone in a crowd, that’s how I describe it I was just getting worse and worse, hearing noise, I even broke my radio in my bedroom, I just had enough… just can’t take it, I have to speak to someone Dr Kate Hardy (while a trainee psychologist with EDIT Greater Manchester West MH FT)

3. Learning Objectives  Gain insights from hearing some personal stories about the experience of psychosis  Describe how a young person with an emerging psychosis or family member may present to a GP  Understand the benefits of earlier detection and treatment of psychosis  ‘Keep the body in mind’ – when thinking about the impact of emerging psychosis

4. ‘ Schizophrenia is like managing the British empire: the orderly management of decline ’ Anonymous My GP ‘journey’ Rare Kraepelin’s Dementia Care Model

6. Some GP views: “I know that I cannot look after people with severe and enduring mental health problems. I do not have the skills or the knowledge. I couldn't do it well" “Sometimes they have to be standing on a bridge before we can get people help and we have to exaggerate symptoms to get the psychiatrist’s attention at an earlier stage” Helen Lester BMJ 2005

7. Contrasting with patients’ views typified by: "I mean, the GP has to have some understanding of mental health but I don't expect my GP to know all of the issues to do with my illness…. …..I would though expect him or her to refer me to a specialist person. The important thing is that somebody is looking after you so it's not just you on your own. Helen Lester BMJ 2005

8. Victoria (Aus) Burden of Disease Study: Incident Years Lived with Disability rates per 1000 population by mental disorder GPs see a FEP at an age when other serious mental disorders tend to develop

10. Was it just Mary? North Staffs Pathways to Care prospective audit n = 45 (Macmillan, Ryles, Shiers & Lee 1998/9) Sandwell GP interview n = 3 (Alderton 2000 ) Worcester Pathways to Care retrospective audit n = 30 and GP workshop n = 26 (Smith 2000) Walsall Pathways to Care review from case notes n = 18 (Rayne 2002) Gloucester GP Postal questionnaire n = 15 (Davis 2002)

11. Who are they?  50% < 24; youngest aged 13  Average age at onset = 21  75% live with parent(s) or spouse  41% are employed or in full- time education

12. Pathway players (n = 45)

13. Symptoms presented to GPs?  7% - clear evidence of psychosis  37% - physical / somatic symptoms  50% report emotional and psychological changes  25% report changes in work and social functioning

14. Help seeking? Q how did it feel going to a doctor about psychological problems? A.Emmm, bit weird at first, but on the other hand, they know, I thought, because they’ve had other people go in there before with problems Q. was there anybody you’d have spoken to about your psychological problems, confided in? A. Nah, not in my family, not even my nana, not even my Nana… “I’ll tell you why, cos you’ve not got a job, you’ve not got this, you sit in your room, smoking weed all day” …and she doesn’t understand but she’s old- school me Nana Rory Byrne researched views EDIT

15. Nature of their help-seeking to GP?  Prodrome: typically 2 – 6 m  ~ 50% seek help <2 wks of psychotic symptoms  ~ 20% of individuals have courage to seek help themselves  ~75% relied on family members to seek help on their behalf  5 contacts on average to achieve pathway to care  GPs are first point of professional contact ~ 65%

16. Plain sailing? 7-15m treatment delays Families’ concerns ignored Dangers ahead Outcome providential Can be assisted

17. DANGER AHEAD!!! DANGER AHEAD!!! Pressure wave- trapped Crisis response –73–80% hospitalised –36–59% Mental Health Act –45% police involved 50% disengage: likely crisis reengagement Relapse – 50% < 24m Many just quietly drift…

18. …. 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 “…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

19. ….and a path to inequality  Excluded  12% with a job  In previous 2 weeks (Nithsdale survey) o39% either had no friends or had met none o34% had not gone out socially o 50% no interest or hobby other than TV  one in four have serious rent arrears  3x divorce rate  Dis-ease  up to 25 years less life  33% suicide and injury oLifetime suicide risk 10%; 2 / 3 within first 5yrs, esp around the FEP  66% are premature deaths from physical causes o2-3x rate of CVS, Respiratory or infective disorders oLifestyle adverse factors: smoking; diet; activity oUp to 5x rate of diabetes oPoorer health care

20. That’s the problem we are trying to solve

21. Aims of EI services 1. Prevent psychosis in the ultra high risk individuals –identify and intervene on cusp of psychosis 2. Reduce DUP (Duration of Untreated Psychosis) : –promote early detection & engagement by community agencies –Comprehensive initial mental health assessments & diagnosis 3. Optimise initial experience of acute care & treatment: –‘Youth friendly’ Acute Home based/Hospital Treatment 4. Maximise recovery & prevent relapse during critical period: –Provide outreach integrated bio/psycho/social interventions –focus on functional/vocational as well as symptomatic recovery –address co-morbidity and treatment resistance early –Support carers and network of community support agencies

22. Stages of Early Intervention in Psychosis Functioning Age Prodrome First episode of psychosis 162024 88% recover 82% relapse 57% recover 78% relapse 32% recover 86% relapse 1st 2nd3rd4th Adapted from Robinson et al, 1999 Prodrome DUP Acute Recovery & Relapse prevention

23. What helps – some views of young people attending the EDIT service before I was just a jumbled mess – I was anxious, now I know why I’m anxious, what situations lead me to that, why those situations lead me to that, so it’s been a lot of help I do recognise that medication is only a short term solution and hopefully one day I won’t need it it’s a team and I’m part of that team you know, I’m just as important, I’m making decisions, after all I am the only one that knows about what’s going on in my own head Rory Byrne researched views EDIT

24. Clinical Outcomes 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%

25. Reflection

26. Rapids Eddy Family PC Family crisis Drop out of Educ’n Isolated from friends Suicide attempt Offending behaviour Mental illness Homeless Drugs Rapids Rapids No money Distressed No job Youth worker

27. Using Nature – Eddies Early detection of danger ahead Pull ashore, get out, take a look and regroup Use understanding of the nature of the journey and knowledge to stop and even regain some ground

28. Safety raft White water Rapids Eddy Family Guides Lookout with life ring

29. The hazards can be reduced and ultimately negotiated Timely support. Thorough preparation Effective use of well developed evidence- based approaches –for both the young person –and their family.

30. Celebrate and prepare Have learnt something Have a guide/mentor –Professional, family, friend or peer Alert and ready for a next time? –Take remedial action –Seek help

31. Supporting GPs’ to do a difficult job better:

32. Acknowledgements to: Dr. Roy Morris Dunedin and Dr Maryanne Freer, Newcastle for contributing the white water rafting metaphor to Guzer.com for use of their video clips and to Paddy Power for slides 19 & 20 Early intervention is everybody’s business EI psychosis services insufficient by themselves GPs offer continuity, context and family practice: –Key role in care pathway of emerging psychosis –Listen and act on concerns of the family Keep the body in mind. –Alongside practice nurses, GPs can be critical players in improving physical health pathways Equipped for the life ahead both for the young person and their family

33. You don’t need an engine when you have wind in your sails Paul Bate 2004