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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. Views from some young people attending the EDIT service.

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early psychosis a journey into uncharted waters
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 16th 2008

views from some young people attending the edit service
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)

learning objectives
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
schizophrenia is like managing the british empire the orderly management of decline anonymous

My GP ‘journey’

        • Rare
        • Kraepelin’s Dementia Care Model

‘Schizophrenia is like managing the British empire: the orderly management of decline’Anonymous

slide6
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

slide7
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

slide8

GPs see a FEP at an age when other serious mental disorders tend to develop

Victoria (Aus) Burden of Disease Study: Incident Years Lived with

Disability rates per 1000 population by mental disorder

was it just mary
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)
who are they
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
symptoms presented to gps
Symptoms presented to GPs?
  • 7% - clearevidence of psychosis
  • 37% - physical / somatic symptoms
  • 50% report emotional and psychological changes
  • 25% report changes in work and social functioning
help seeking
Help seeking?

Q how did it feel going to a doctor about psychological problems?

  • 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

nature of their help seeking to gp
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%
plain sailing
Plain sailing?
  • 7-15m treatment delays
  • Families’ concerns ignored
  • Dangers ahead
  • Outcome providential
  • Can be assisted
danger ahead pressure wave trapped
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…
marooned to some backwater
…. marooned to some backwater?

“…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

“…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

and a path to inequality
….and a path to inequality
  • Excluded
    • 12% with a job
    • In previous 2 weeks (Nithsdale survey)
      • 39% either had no friends or had met none
      • 34% had not gone out socially
      • 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
      • Lifetime suicide risk 10%;

2/3 within first 5yrs, esp around the FEP

    • 66% are premature deaths from physical causes
      • 2-3x rate of CVS, Respiratory or infective disorders
      • Lifestyle adverse factors: smoking; diet; activity
      • Up to 5x rate of diabetes
      • Poorer health care
aims of ei services
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
slide22

Stages of Early Intervention in Psychosis

Prodrome

Normal development

DUP

Acute

Functioning

Recovery & Relapse prevention

88% recover

Prodrome

1st

57% recover

32% recover

2nd

3rd

4th

First episode

of psychosis

82%

relapse

86%

relapse

78%

relapse

16

20

24

Age

Adapted from Robinson et al, 1999

what helps some views of young people attending the edit service
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

slide26

Rapids

PC

Eddy

Family crisis

Distressed

Isolated from friends

Family

Drop out of Educ’n

Youth worker

Suicide attempt

Mental illness

Rapids

Offending behaviour

Drugs

No job

Homeless

Rapids

No money

using nature eddies early detection of danger ahead
Using Nature – EddiesEarly 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
slide28

Family

Eddy

Guides

White water

Rapids

Lookout with life ring

Safety raft

the hazards can be reduced and ultimately negotiated
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.
celebrate and prepare
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
slide32

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

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