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
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
My GP ‘journey’
• Rare
• Kraepelin’s Dementia Care Model
‘Schizophrenia is like managing
the British empire: the orderly
management of decline’
Anonymous
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
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?
• 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 fulltime education
Pathway players (n = 45)
General psychiatrists
Family members
GP
Police
CPN
A&E
SW
Psychologist
Teacher / Tutor
Neighbour
Police surgeon
Hostel staff
Probation officer
Prison staff
Resource centre
45
37
36
22
18
13
11
5
4
4
4
4
3
3
3
Health visitor
Work colleagues
Private landlord
Church
Occupational health
Friends
OT
General physician
Learning diff psychiat
Forensic psychiatrist
Substance misuse
Homeless services
Solicitor
Ambulance services
Public Health
3
3
2
2
2
2
2
1
1
1
1
1
1
1
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 oldschool 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!!!
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?
“…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
 Excluded
 12% with a job
 In previous 2 weeks (Nithsdale survey)
o 39% either had no friends or had met none
o 34% 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
o Lifetime suicide risk 10%;
2/ within first 5yrs, esp around the FEP
3
 66% are premature deaths from physical causes
o
o
o
o
2-3x rate of CVS, Respiratory or infective disorders
Lifestyle adverse factors: smoking; diet; activity
Up to 5x rate of diabetes
Poorer health care
That’s the problem we
are trying to solve
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
Stages of Early Intervention in Psychosis
Prodrome
DUP Acute
Recovery & Relapse prevention
88% recover
57% recover
32% recover
1st
First episode
of psychosis
16
Age
20
2nd
3rd
4th
82%
relapse
78%
relapse
86%
relapse
24
Adapted from Robinson et al, 1999
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)
National
EIS (3y) 2003-6 n=78
12-18m
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%
8-18%
55%
48%
21%
0%
Duration of untreated
psychosis
Employed
Suicide attempted
completed
Reflection
Rapids
PC
Eddy
Distressed
Family
crisis
Family
Youth
worker
Isolated from
friends
Drop out
of Educ’n
Suicide
attempt
Offending
behaviour
Mental
illness
Rapids
Drugs
No job
Homeless
Rapids
No money
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
Family
Eddy
Guides
White water
Rapids
Lookout with
life ring
Safety raft
The hazards can be reduced and
ultimately negotiated
• Timely support.
• Thorough preparation
• Effective use of well
developed evidencebased 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:
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
You don’t need an engine when you have wind in your sails
Paul Bate 2004