RecoveryFocused Mental Health Services: Reclaiming our lives

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Recovery-Focused Mental Health Services
Reclaiming our lives

• Rachel Perkins
• Director of Quality Assurance and User Experience
• South West London and St Georges Mental Health
  NHS Trust

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Mental health problems a catastrophic and life
changing experience

• More than just unusual and sometimes frightening
  experiences but all that goes along with being a
  mental patient in our societies ... you become
  other, one of them not one of us
• Prejudice, discrimination and exclusion outside
  services and within wherever you look you
  basically you have two choices
• Mainstream media mad axe murderer or poor
  incompetent
• Professional literature deficit, dysfunction,
  risk, burden
• Either way you are never going to amount to very
  much ... and you are left feeling very alone and
  very, very frightened.

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But it doesnt have to be this way ...

• Many, many people with mental health problems
  have shown us that recovery is possible ... It is
  possible to live a valued, satisfying and
  contributing life with mental health problems
• Statesmen like Parnell, Churchill, Kjell Bondevik
  (Norwegian prime-minister until 2004)
• Scientists like Einstein and Babbage
• Scholars, musicians, artists, writers
• Businessmen like Ted Turner who set up Cable
  Network News
• and many ordinary people living ordinary lives
  made harder by prejudice and discrimination

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Mental health problemsThe province of expert
professionals

• Traditionally assumed that expert professionals
  were the only ones who had the expertise to
  determine what was good for patients.
• Decisions at all levels should be left to the
  experts
• Decisions about what was wrong with people
• Decisions about peoples possibilities
• Decisions about individual treatment
• Decisions about all facets of service development
  and delivery

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Over a century of service user resistance

• The history of protest by people labelled
  insane stretches back to the second half of the
  19th century and the The Alleged Lunatics Friend
  Society
• patients are first crushed and then discharged
  to live a milksop existence in society. (John
  Percival)
• each patient should have a voice in his own
  confinement and care.

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150 years later there have been changes ...

• It is now recognised that service users should
  have a say in their own treatment and care and
  the way in which services are run
• People with mental health problems can expect
  that services will involve service users in
  planning and delivery of care.
• (UK Department of Health Mental Health National
  Service Framework 1999)
• But we continue to think about
• the patient in our services
• needs defined in terms of what we have to offer
  (inpatient care, assertive outreach, medication,
  therapy ....)
• choice limited to what professionals offer

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Another way ... the person in their lifeIdeas
about recovery

• Ideas about recovery were born not of learned
  academics or expert professionals but of those
  who had faced the challenge of mental health
  problems
• First found a voice as part of the USA Civil
  Rights Movement in the work of people like Judi
  Chamberlin, Patricia Deegan ....
• Recovery is about
• regaining control over your life and destiny
• building a new sense of self, meaning and purpose
• rebuilding a meaningful, satisfying and
  contributing life
• growing within and beyond what has happened to
  you

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Professionals do not hold the key to recovery

• Recovery is
• not the same as cure
• not a professional intervention ... an individual
  journey
• the lived or real life experience of people as
  they accept and overcome the challenge of the
  disability. They experience themselves as
  recovering a new sense of self and of purpose
  within and beyond the limits of the disability.
  (Deegan 1988)
• a deeply personal, unique process of changing
  ones attitudes, values, feelings, goals, skills
  and rolesThe development of new meaning and
  purpose in ones life as one grows beyond the
  catastrophic effects of mental illness
  (Anthony 1993)
• not a linear process or an end point but a
  continuing journey

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What helps people in their journey of recovery?

• There is no formula for recovery Everyones
  journey is different and uniquely personal ...
  but those who have embarked on the journey
  repeatedly tell us that three things are
  important
• HOPE
• CONTROL
• OPPORTUNITY

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Recovery is impossible without hope

• If you cant see the possibility of a decent
  future for yourself what is the point in
  trying?
• Relationships are central to hope
• It is difficult to believe in yourself if
  everyone around you thinks you will never amount
  to very much
• When you find it hard to believe in yourself you
  need others to believe in you
• Not just relationships with mental health
  providers friends, family and peers ...
• We must never forget the gift of hope that people
  who share the experience of mental health
  problems give each other
• (Deegan, 1988)

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Recovery involves taking back control

• Getting back in the driving seat
• Taking back control over your life and how you
  live it
• Making sense of what has happened to you
• Becoming an expert in your own self-care
• Having control over the help you receive
• People often feel demeaned by needing help to do
  ordinary everyday things ... but what is the
  difference between Prince Charles and a
  psychiatric patient?

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Recovery is impossible without opportunity

• You cannot rebuild your life if everywhere you
  turn you are debarred from doing the things you
  value
• The opportunity to
• be a part of our communities not apart from
  them
• be a valued member of those communities
• access the opportunities that exist in those
  communities
• contribute to those communities always being on
  the receiving end of help from others is a
  devaluing and dispiriting place to be
• There are many ways in which people can
  contribute ... but whether we like it or not,
  work has a central role in our society

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Employment the opportunity to contribute

• It links us to the communities in which we live
  and enables us to contribute to those communities
• It provides meaning and purpose in life
• It affords status and identity the 2nd question
  What is your name? What do you do?
• It provides social contacts
• It is good for our health
• It gives us the resources we need to do the other
  things we value in life
• Out of the blue your job has gone, with it any
  financial security you may have had. At a
  stroke, you have no purpose in life, and no
  contact with other people. You find yourself
  totally isolated from the rest of the world. No
  one telephones you. Much less writes. No-one
  seems to care if youre alive or dead .
• (Bird, 2001)

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Most people with mental health problems want to
work few have the opportunity to do so

• 21 of adults with longer term mental health
  problems are in employment (2007 Labour Force
  Survey)
• In comparison with people with other health
  conditions, people with mental health problems
  are twice as likely to lose their jobs following
  the onset of problems (Burchardt, 2003)
• Among people using secondary mental health
  services the picture is even worse. In
  Wandsworth
• 1990 19.7 of longer term service users in
  employment
• 1999 8.1 of longer term service users in
  employment

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But can they work?

• The research evidence
• Characteristics of individuals have little impact
  on employment outcomes therefore there is no
  justification for excluding people on the basis
  of clinical history, employability, work
  readiness
• Segregated sheltered workshops and pre-vocational
  skills training are not very good at helping
  people with mental health problems to return to
  employment
• There is strong evidence that with the right kind
  of help around 60 of people with serious mental
  health problems can successfully get and keep
  work

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Individual placement with support evidence based
supported employment

• Competitive employment real jobs
• Team approach
• Client choice
• Benefits counselling
• Rapid job search
• Job matching based on client preferences
• On-going supports
• (Becker IPS Fidelity Scale, 2008) (Bond, 2004)

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Competitive employment rates in 16 randomised
controlled trials of supported employment
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• European randomised controlled trial compared
  traditional vocational service (non-integrated
  train-place with IPS for people with
  schizophrenia (Burns et al, 2007)
• 55 gained in IPS employment vs. 28 in
  traditional service
• 13 drop-out in IPS vs. 45 in traditional
  service
• 20 readmitted in IPS vs. 31 in traditional
  service
• Employment associate with
• Employment is associated with improved
  self-esteem, symptom control, quality esteem,
  symptom control, quality of life ... no changes
  with sustained sheltered employment (Bond, 2001)
• 4 studies with 10-year follow year follow-ups ups
  work outcomes improve over time (Test, 1989
  Salyers 2004 Becker, 2006 Bush, 2008)

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Implementing Individual Placement with Support
in community mental health teams

• Recruiting Employment Specialists to work
  within Teams and increasing the focus on
  vocational issues in the care planning process
• Employment Specialists help people
• to keep jobs they already have
• to decide what they want to do and apply for the
  work they want
• to access mainstream employment agencies
• in the transition to work
• They also
• ensure that mental health professionals attend to
  work related issues in care plans
• advise and assist other mental health workers in
  providing ongoing support
• support employers and advise them on adjustments
  the person may need

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• Employment Specialists in 11 out of 23 South West
  London Community Mental Health Teams
• 1984 people received vocational support
• 1155 people successful in working/studying in
  mainstream integrated settings
• 645 people supported to get/keep open employment
• 293 people supported to get/keep mainstream
  education/training
• 217 people supported in mainstream voluntary work

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Number of people supported in employment,
mainstream education and voluntary work in a
borough where Individual Placement with Support
had been fully implemented in all community teams
Team OTs supported by 1 Employment Specialist
across 4 teams
0.5 Employment Specialists per CMHT
1 full-time Employment Specialist per CMHT
Open employment Mainstream education/training Main
stream work experience/voluntary work
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Number of people supported in employment,
mainstream education and voluntary work in a
borough Individual Placement with Support not
implemented
Team OTs supported by 0.5 Employment Specialist
across 4 teams
Open employment Mainstream education/training Main
stream work experience/voluntary work
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The importance of early intervention

• Research shows rapidly decreasing employment
  rates following onset of serious mental health
  problems.
• For example, one study found that 52 of people
  were in employment at first hospital admission
  but only 25 at 2 month follow-up another found
  only 13 in employment 12 months after first
  admission
• But with Individual Placement with Support in
  the South West London team for people with first
  episode psychosis this downward trend was
  reversed

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Early Intervention for First Episode
Schizophrenia including Individual Placement
with Support with work and education
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Not just them out there employing people with
mental health problems in mental health services

• Why employ people with mental health problems in
  mental health services?
• Provides much needed employment opportunities
• Leading by example NHS is a major employer, not
  just a service provider
• People who have successfully lived with mental
  health problems have expertise that is valuable
  to others who are facing a similar challenge
• Counteracts despair and pessimism offers images
  of possibility to both service users and staff
• Breaks down them and us divide

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South West London User Employment Programme
established 1995

• Designed to increase access to employment in
  mental health services for people who have
  themselves experienced mental health problems
  employment in ordinary existing positions on the
  same terms and conditions as everyone else

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Types of objections raised

• What about transference will they be
  objective?
• What about confidentiality? They will have
  access to peoples psychiatric records
• Mentally ill people will be taking our jobs
• Wont they be unreliable? Wont they be off
  sick all the time?
• Wont they be dangerous a risk to clients?
• What happens if they go mad at work?
• We wont be able to tell jokes in ward rounds
  any more

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A supported employment programme

• Assistance in the recruitment process and
  transition to work
• Ongoing support to employees and managers
• Reasonable adjustments in the work setting
• Outcomes 1995 2008
• People with mental health problems supported in
  191 posts within the Trust
• diagnosis 41 depression, 27 schizophrenia, 17
  bipolar disorder, 4 personality disorder (80 gt
  1 psychiatric admission)
• 66 in clinical positions, 27 administrative/mana
  gerial, 7 support services
• 22 in posts requiring professional mental health
  qualification
• At 1st January 2008 86 continued in employment
  or professional training

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A Charter for the Employment of People who have
Experienced Mental Health Problems

• Designed to
• decrease employment discrimination against people
  with mental health problems throughout the
  organisation
• recognise the important contribution that people
  with mental health problems can make to the work
  of the organisation
• Personal experience of mental health problems
  desirable on person specifications for all
  posts
• Advertisements encourage people with mental
  health problems to apply
• Confidential equal opportunities monitoring
  includes mental health problems

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• Beware - if you come to work in South West London
  you dont know whether your colleague (or your
  boss) is one of them or one of us
• Every year since 1999 at least 15 of recruits
  have personal experience of mental health
  problems
• In 2006/7 17 had mental health problems
• In 2007/8 24 had mental health problems
• And the higher up you go the more of them you
  find ...

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2006/7
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Beyond employment do experts hold the key?

• In traditional services power, hierarchy, claims
  to special knowledge about others etc. remain
  and get in the way of people working together and
  caring for themselves and each other
• Mental health services and the professionals who
  inhabit them can, albeit often unwittingly, serve
  to perpetuate exclusion and marginalisation in a
  kind of vicious cycle.
• People with mental health problems encouraged to
  believe that experts hold the key to all of our
  problems
• Our nearest and dearest believe we are unsafe in
  their untrained hands.
• And we all become less and less used to finding
  our own solutions and , embracing distress and
  human problems as a part of ordinary everyday
  life (see Mary OHagan, 2007)

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Peer support in mainstream services

• Peer support groups/practices where people seek
  to learn and grow as equals drawing on each other
• Starting point is peoples own stories rather
  than diagnosis What has happened to you?
  rather than What is wrong with you?
• Shared responsibility, shared journey
• META in Arizona 70 of staff peer support
  workers

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Beyond choice ... issues of control
Handing over control to service users and
communities by fostering service user leadership,
integrating with other sectors and fostering
community development and inclusion People with
mental health problems, as well as communities,
need to start believing they hold most of the
solutions to human problems. (OHagan,
2007) And what of mental health professionals?
on tap not on top - carriers of
technologies that we may want to use at times,
just like architects, plumbers and hairdressers.
(OHagan, 2007)
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Beyond being realistic ...

• ... We must all keep daring to dream
• The value of dreams and ambitions lies not in
  their realism but in their ability to motivate us
  give us a reason to get up in the morning

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Workshop Locations(commencing at 11.30am)

• Disability Employment
• The Role of Supported Employment for People with
  Mental Health Issues
• Social Welfare Entitlements Benefits
• Meitheal Programme,
• County Wexford Partnership

• Park Suite 4th Floor
• Munster Suite
• 1st Floor
• Ulster Suite
• 1st Floor
• Brehon 1
• Main Conference
• Hall