Early psychosis: a journey into uncharted waters?

A primary care view

David ShiersMo Vaillancourt

Rory Byrne

Royal Soc Medicine Workshop early detection of psychosis. Sept 16th 2008

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 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

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

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

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

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?

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

Pathway players (n = 45)

General psychiatrists 45 Health visitor 3Family members 37 Work colleagues 3

GP 36 Private landlord 2

Police 22 Church 2

CPN 18 Occupational health 2

A&E 13 Friends 2

SW 11 O T 2

Psychologist 5 General physician 1

Teacher / Tutor 4 Learning diff psychiat 1

Neighbour 4 Forensic psychiatrist 1

Police surgeon 4 Substance misuse 1

Hostel staff 4 Homeless services 1

Probation officer 3 Solicitor 1

Prison staff 3 Ambulance services 1

Resource centre 3 Public Health 1

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

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

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?

• 7-15m treatment delays

• Families’ concerns ignored

• Dangers ahead

• Outcome providential

• Can be assisted

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…

…. marooned to some backwater?

“…“…our overwhelming feeling was of our overwhelming feeling was of an opportunity missed - to what an opportunity missed - to what degree she has been needlessly degree she has been needlessly disabled by those first four years of disabled by those first four years of care we’ll never know” care we’ll never know” Mother 2002Mother 2002

“…“…can’t get a job, can’t get a can’t get a job, can’t get a girlfriend, can’t get a telly, can’t get girlfriend, can’t get a telly, can’t get nothing… it’s just everything falls nothing… it’s just everything falls down into a big pit and you can’t down into a big pit and you can’t get out…” get out…” Hirschfeld, 2002Hirschfeld, 2002

….and a path to inequality Excluded

12% with a job In previous 2 weeks (Nithsdale survey)

o 39% either had no friends or had met noneo 34% had not gone out sociallyo 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

o Lifetime suicide risk 10%; 2/3 within first 5yrs, esp around the FEP

66% are premature deaths from physical causes o 2-3x rate of CVS, Respiratory or infective disorderso Lifestyle adverse factors: smoking; diet; activityo Up to 5x rate of diabeteso Poorer health care

That’s the problem we are trying to solve

Aims of EI services1. 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

Stages of Early Intervention in PsychosisF

unct

ioni

ng

Age

Prodrome

First episode of psychosis

16 20 24

88% recover

82% relapse

57% recover

78% relapse

32% recover

86% relapse

1st

2nd 3rd 4th

Adapted from Robinson et al, 1999

Prodrome

DUP Acute

Recovery & Relapse prevention

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

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

satisfied49%

56%

91%

71%

Employed 8-18% 55%

Suicide attempted

completed48% 21%

0%

Reflection

RapidsRapids

EddyEddy

FamilyFamily

PCPC

Family crisis

Drop out of Educ’n

Isolated from friends

Suicide attempt

Offending behaviour

Mental illness

Homeless

Drugs

RapidsRapids

RapidsRapids

No money

Distressed

No job

Youth Youth workerworker

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

Safety raft

White water

Rapids

Eddy

Family

Guides

Lookout with life ring

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

• Have learnt something• Have a guide/mentor

– Professional, family, friend or peer

• Alert and ready for a next time?– Take remedial action– Seek help

Supporting GPs’ to do a difficult

job better:

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 Equipped for the life ahead both for the ahead both for the

young person and their young person and their familyfamily

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