Getting your life back: The role of employment in recovery

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Getting your life back The role of employment
in recovery

• 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

• Strange and often frightening symptoms
• Prejudice, discrimination, exclusion - within
  and outside services many lose all that they
  hold dear ...including your job
• 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)
• Loss of confidence and self-belief
• Feel very alone and 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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Another way ... ideas 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

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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 UK Labour Force
  Survey)
• Among people using secondary mental health
  services the picture is even worse. UK National
  Service User Survey 16 in paid employment
• 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)

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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
• Four studies with 10-year follow-ups show that
  work outcomes improve over time (Test, 1989
  Salyers 2004 Becker, 2006 Bush, 2008)
• Employment associate with improved self-esteem,
  symptom control, quality of life ... no changes
  with sustained sheltered employment (Bond, 2001)

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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 After the two years 73 in
employment or mainstream education/training
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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 200724 had mental health problems
• And the higher up you go the more of them you
  find ...

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2007
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Beyond employment in existing positions 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
• Mutuality shared responsibility, shared journey
• Starting point is peoples own stories rather
  than diagnosis What has happened to you?
  rather than What is wrong with you?

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Peer support workers on an acute admission ward

• Just two workers two days per week employed
  trained and supervised by local voluntary sector
  user organisation
• Evaluation
• Opportunity to talk about worries and concerns
• Support in recovery
• Hopefulness of being able to do the things you
  want to do in life
• META in Arizona 70 of staff peer support
  workers

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What did you find useful about spending time with
a peer support worker?
The peer support worker understands what it is
like. She listened and was sympathetic because
she had been through things herself. You cannot
always rely on the doctors for help as they do
not understand how it feels - the peer support
worker does. Being able to discuss my personal
issues and also doing a comparison with her own.
Realising that there is life after mental
illness. Chatting about our problems - being
with someone who has been through it
themselves. It helped me to feel more hopeful
and believe I could still do things because I
could see they had. But we have barely scratched
the surface META - in Arizona - 70 of staff
peer support workers
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Beyond employment ... 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 workers? 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