Transcript Early Intervention in Psychosis: the NSF and beyond

Annual Norwegian Early Intervention Conference
September 2nd 2008
The 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
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?
Was this story unique?
Treatment delays 12-18m
Families’ concerns
ignored
Crisis response the rule:
-
80% hospital admission
45% police involved
50% mental health act
Hugely traumatic
GPs are key pathway
players
50% lost to follow-up at
12m
Danger 10% lifetime
suicide risk (2/3 in first
5yrs)
…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
“…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
 Stigma & social exclusion
 Unfulfilled lives
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
DELAYS
STIGMA &
PREJUDICE
COERCION
DISSATISFACTION
SOCIAL
EXCLUSION
PESSMISTIC
SERVICES
ISOLATED
& IGNORED
FAMILIES
IMPROVE
ACCESS &
RAISE COMMUNITY
AWARENESS
ENGAGEMENT
EARLY PSYCHOSIS
DECLARATION
TEACH
PRACTITIONER
&
COMMUNITY
WORKERS
PROMOTE
RECOVERY AND
ORDINARY LIVES
ENGAGE AND
SUPPORT
FAMILIES
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
The use of involuntary
treatment less than 25%
Suicide rates less than 1%
“BLACK BOX”
First contact with families or
other supporters within a week
90% of families feel respected
and valued as partners in care
All 15 year olds able to
understand and know how
to seek help re psychosis.
Consumers confident that generalists + specialists
can deal effectively with early psychosis
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
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:
1. Early detection of psychosis
2. Reduce the long duration of untreated psychosis
3. Importance of the first 3-5 years following onset
(critical period) for later biological, psychological
and social outcomes
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
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)
o DUP less than 3 months
o Support for first 3 years
 CAMHS Target and Childrens’ NSF (DoH 2003)
Comprehensive EI services by 2006
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.
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
Early Psychosis Declaration
 Regional hothouses to 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
Establish a sound infrastructure to
support EI implementation
 Knowledge management:
– EI knowledge community
– Framework for research dissemination, practice exchange and training
 National EI Service Mapping exercise
 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
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
Changing practice…
From margin to mainstream: intensification
St Vincents
Model
Inner rage…
First
episode
research
IRIS
Guidelines
‘big idea’
First EIS
N
S
Launch of
Newcastle
Declaration
F
Secure
IEPA and
WHO
Support
International
Early Psychosis
Declaration
NIMHE/Rethink
EI development
programme
Implement the
declaration
EPPIC
1986 / 1992
1995 / 1999
From counting
teams…
To counting
cases…
To counting
outcomes
Policy
off the ground
EI service
development in
the UK
get organised
2002
beyond illness to health
2004
2008/9
From Counting Teams…
Sig.Growth in EI Teams Nationally…
London MiData set illustration
(Fisher et al 2007)
2005
2007
To Counting Cases…
Continuing Policy Support…
 DH EI Recovery Plan 2006/7 (DH 2006)
o Original 2003-2006 trajectories to provide EI to 22,500
patients by December 2006 was off-course
o EI Recovery Plan to 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
Early Intervention Provision across
England (year end caseload figures)
25000
20000
15000
LDPR
10000
5000
0
1998
2002/3
2003/4
2 teams
24 teams
41teams
2004/5
2005/6
2006/7
2007/8
2008/9
109 teams 127 teams 160 teams 145services
Reflection on the Status Quo
Simply commissioning EI teams and
meeting caseload targets are necessary
enablers but not sufficient in themselves…
…its the quality of service provision that
really makes the difference
To Counting Outcomes…
Clinical Effectiveness Outcome Data
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
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)
Invest to Save Argument:
EI Cost Economic Data
(McCrone, Dhanasari, Knapp 2007)
50000
Expected costs (£)
40811
30000
26568
14394
10000
9422
One year costs
-10000
EI
Standard care
Three year costs
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 longterm, and should be extended to provide care
for people as soon as their illness emerges.”
Potential Savings from Expanding EI services in England
over next 20 years
Paying the Price The cost of mental health care in England to 2026
Annual national savings (£ Million)
McCrone 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)
Assumes 50% coverage in 2008
Similar pattern with Bipolar Disorder
Challenges beyond current UK EI
policy…
Typical Course of Psychosis
Early Detection &
Intervention in the ‘atrisk mental state’
(ARMS) phase (Early
Detection)
Psychosis
Early Intervention after
onset of psychosis (EI)
“DUP”
premorbid phase
(Larsen et al 2001)
very early symptoms psychotic symptoms
Adolescence to
Adulthood
Maintaining outcomes
beyond EI service
involvement:
Treatment & Recovery
Relapse?
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
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
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
What have we learnt…
…beyond policy and a National
EI Programme
From margin to mainstream: intensification
Inner rage…
First
episode
research
IRIS
Guidelines
‘big idea’
First EIS
St Vincents
Model
Secure
IEPA and
WHO
Support
Launch of
Newcastle
Declaration
International
Early Psychosis
Declaration
N
S
F
NIMHE EI
development
programme
Implement the
declaration
Policy
EPPIC
off the ground
1986 / 1992
1995 / 1999
get organised
2002
EI service
development in
the UK
From counting
teams…
To counting
cases…
To counting
outcomes
beyond illness to health
2004
2008/9
“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)
 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
Project/ programme approach
Social movements approach
A planned programme of change Change is about releasing energy
with goals and milestones
and is largely self-directing
(centrally led)
(bottom up)
‘Motivating’ people
‘Moving’ people
Change is driven by an appeal to There may well be personal costs
the ‘what’s in it for me’
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
Driven by formal systems
change: structures (roles,
institutions) lead the change
process
People change themselves and each
other - peer to peer
Driven by informal systems:
structures consolidate, stabilise
and institutionalise emergent
direction
You don’t need an engine when you have wind in your sails
Paul Bate 2004