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