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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?
Treatment delays 12-18m
Crisis response the rule: - 80% hospital admission - 45% police involved - 50% mental health act - Hugely traumatic
GPs are key pathway players
Families’ concerns ignored
50% lost to follow-up at 12m
Danger 10% lifetime suicide risk (2/3 in first 5yrs)
Was this story unique?
…marooned to some backwater?
Stagnation in pessimistic service
Relapse and remission
Dis-ease
Stigma & social exclusion
Unfulfilled lives
“…“…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 girlfriend, can’t get a telly, can’t get nothing… it’s just everything get nothing… it’s just everything falls down into a big pit and you falls down into a big pit and you can’t get out…” can’t get out…” Hirschfeld, 2002Hirschfeld, 2002
“…“…our overwhelming feeling was of an our overwhelming feeling was of an opportunity missed - to what degree she opportunity missed - to what degree she has been needlessly disabled by those has been needlessly disabled by those first four years of care we’ll never know” first four years of care we’ll never know” Mother 2002Mother 2002
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
STIGMA &STIGMA &PREJUDICEPREJUDICE
DELAYS DELAYS
COERCION COERCION
ISOLATEDISOLATED& IGNORED & IGNORED
FAMILIESFAMILIES
PESSMISTICPESSMISTICSERVICESSERVICES
SOCIALSOCIALEXCLUSIONEXCLUSION
DISSATISFACTIONDISSATISFACTION
RAISE COMMUNITYRAISE COMMUNITY AWARENESSAWARENESS
IMPROVEIMPROVE ACCESS & ACCESS &
ENGAGEMENTENGAGEMENT
ENGAGE AND ENGAGE AND SUPPORT SUPPORT FAMILIESFAMILIES
TEACHTEACHPRACTITIONER PRACTITIONER
& & COMMUNITYCOMMUNITYWORKERSWORKERS
PROMOTE PROMOTE RECOVERY AND RECOVERY AND ORDINARY LIVESORDINARY LIVES
EARLY PSYCHOSISEARLY PSYCHOSISDECLARATIONDECLARATION
““BLACK BOX”BLACK BOX”
90% satisfied with employment, educational, social attainments
Suicide rates less than 1%
90% of families feel respectedand valued as partners in care
Consumers confident that generalists + specialists can deal effectively with early psychosis
Duration of Untreated Psychosis less than 3 m
The use of involuntary treatment less than 25%
First contact with families or other supporters within a week
All 15 year olds able to understand and know how to seek help re psychosis.
Effective treatment after no more than 3 attempts to seek help
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
Inner rage…
IRIS
Guidelines
‘big idea’
Policy
NIMHE/Rethink EI development
programme
Implement the
declaration
EI service development in
the UK
From counting teams…
To counting cases…
To counting outcomes
St VincentsModel
Launch of Newcastle Declaratio
n
From margin to mainstream: From margin to mainstream: intensification
Secure
IEPA and WHO
Support
First episode research
First EIS
EPPIC
off the off the groundground
beyond illness to beyond illness to healthhealth
1986 / 1992 1995 / 1999 2002 2004 2008/91986 / 1992 1995 / 1999 2002 2004 2008/9
International
Early Psychosis
Declaration
get get organisedorganised
Changing practice…
N
S
F
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)
0
5000
10000
15000
20000
25000
1998 2002/3 2003/4 2004/5 2005/6 2006/7 2007/8 2008/9
LDPR
2 teams 24 teams 41teams 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)
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%
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)
9422
26568
14394
40811
-10000
10000
30000
50000
One year costs Three year costs
Ex
pe
cte
d c
os
ts (
£)
EI
Standard care
Paying the Price The cost of mental health care in England to 2026
“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 long-term, and should be extended to provide care for people as soon as their illness emerges.”
McCrone P, Dhanasiri S, Patel A, Knapp M, Lawton-Smith S Kings Fund 2008
Potential Savings from Expanding EI services in England over next 20 years
Paying the Price The cost of mental health care in England to 2026McCrone P, Dhanasiri S, Patel A, Knapp M, Lawton-Smith S Kings Fund 2008
National Coverage by EI teams
Assumes 50% coverage in 2008
100% coverage
90% coverage
80% coverage
70% coverage
60% coverage
£5000 saved per case/year with EI teams
5,500 new cases of Schizophrenia/year (Fearon et al, 2006)
Ann
ual n
atio
nal s
avin
gs (
£ M
illi
on)
Similar pattern with Bipolar Disorder
Challenges beyond current UK EI policy…
Typical Course of Psychosis (Larsen et al 2001)
premorbid phase very early symptoms psychotic symptoms
Adolescence to Adulthood
Psychosis
Treatment & Recovery Relapse?
“DUP”
Early Detection & Intervention in the ‘at-risk mental state’ (ARMS) phase (Early Detection)
Early Intervention after onset of psychosis (EI)
Maintaining outcomes beyond EI service involvement:
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
Victoria (Aus) Burden of Disease Study: Incident Years Lived with
Disability rates per 1000 population by mental disorder
FEP typically commences in young people: as do many of the more serious mental disorders
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…
Inner rage…
IRIS
Guidelines
‘big idea’
Policy
NIMHE NIMHE EI EI
development development programmeprogramme
Implement Implement the the
declarationdeclaration
EI service development in the UK
From counting teams… To counting cases…To counting outcomes
St VincentsSt VincentsModelModel
Launch of Newcastle Declaratio
n
From margin to mainstream: From margin to mainstream: intensification
SecureSecure
IEPA and IEPA and WHOWHO
SupportSupport
First First episode episode researchresearch
First EISFirst EIS
EPPICEPPIC
off the off the groundground
beyond illness to beyond illness to healthhealth
1986 / 1992 1995 / 1999 2002 2004 2008/91986 / 1992 1995 / 1999 2002 2004 2008/9
InternationInternational al
Early Early PsychosisPsychosis
DeclarationDeclaration
get get organisedorganised
…beyond policy and a National EI Programme
N
S
F
“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
Driven by informal systems: structures consolidate, stabilise and institutionalise emergent direction
Driven by formal systems change: structures (roles, institutions) lead the change process
People change themselves and each other - peer to peer
Change is done ‘to’ people or ‘with’ them - leaders & followers
Insists change needs opposition - it is the friend not enemy of change
Talks about ‘overcoming resistance’
There may well be personal costs involved
Change is driven by an appeal to the ‘what’s in it for me’
‘Moving’ people ‘Motivating’ people
Change is about releasing energy and is largely self-directing (bottom up)
A planned programme of change with goals and milestones (centrally led)
Social movements approachProject/ programme approach
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