Transcript From Consumer Involvement to Co-production

Recovery, Rehabilitation and
Employment for People with
Mental Health Issues
Rachel Perkins
BA, MPhil (Clinical Psychology) PhD, OBE
10th October 2014
A view from three perspectives
• 34 years working in NHS Mental Health Services: from
clinical psychologist to director
• 25 years using mental health services (both inpatient
and outpatient)
• Over 20 years involvement in policy development on
various UK Government committees and advisory
groups (including an independent review for the UK Government ‘Realising
Ambitions. Better employment support for people with a mental health
condition’, 2009)
The challenge of mental health
conditions
To be diagnosed with mental health problems is a
devastating and life changing event
• Typically we think of mental health conditions as a
clinical challenge: diagnosis, treatment, cure
• But mental health problems are also and enormous
personal and social challenge … often the biggest
problem is what it means to have mental health
problems in our society and all the stereotypes,
prejudice and discrimination they carry with them
The popular perception …
 ‘Mad axe
murderer’ –
 The poor unfortunate
– unable to make decisions
dangerous,
unpredictable - need
to be looked after for
everyone else’s good
for themselves – need to be
looked after for their own
good
 Social security scrounger
– weak, need to pull themselves
together and stop sponging off
the rest of us
 A burden – to individuals,
families, communities, tax
payers, society
Too often these images are often
reinforced within mental health services
• Narratives of ‘deficit and dysfunction’
• Narratives of ‘risk and risk
management’
• Narratives of despair - fading life
chances …
• ‘You have a chronic condition, you’ll
never be able to …’
“All I knew were the stereotypes I had seen on
television or in the movies. To me, mental
illness meant Dr Jekyll and Mr Hyde,
psychopathic serial killers, loony bins, morons,
schizos ... They were all I knew about mental
illness, and what terrified me was that
professionals were saying I was one of them.”
(Deegan, 1993)
“… even the briefest perusal of the current
literature on schizophrenia will immediately
reveal … that this collection of problems is
viewed by practitioners almost exclusively
in terms of dysfunction and disorder. A
positive of charitable phrase or sentence
rarely meets the eye …”
“deficit-obsessed research can only
produce theories and attitudes that are
disrespectful of clients and are also likely
to induce behaviour in clinicians such that
service users are not listened to properly,
… treated as inadequate and … not
expected to become independent or
competent individuals …”
(Chadwick, 1997)
Too many become
“I used to be ....” people
people with a past but no present and no future
Cut off from friends and family, the communities in
which they live, the person we used to be
To be diagnosed with mental health problems is a form of
bereavement:
loss of a sense of who you are, loss of meaning and purpose in life,
loss of position and status, loss of power and control, loss of
hopes and dreams
Too often these losses include loss of
employment
“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
you’re alive or dead .” (Bird, 2001)
or “... the early onset of distress will mean social exclusion throughout
our adult lives, with no prospect of ...a job or hope of a futures in
meaningful employment. Loneliness and loss of self-worth lead us to
believe we are useless, and so we live with this sense of hopelessness,
or far too often choose to end our lives.” (cited by SEU,2003)
There is no way back to how things were before - none of us can turn
the clock back … but there is a way forward
It is possible to recover a
meaningful, satisfying and
contributing life
Recovery is about rebuilding your life
• finding meaning in what has happened
• finding a new sense of self and purpose
• discovering and using our own resources and
resourcefulness
• growing within and beyond what has happened to us
• pursuing our dreams and ambitions
Recovery is “a way of living a
satisfying, hopeful and
contributing life even within the
limitations caused by illness.
... a deeply personal, unique
process of changing one’s
attitudes, values, feelings,
goals, skills and roles.
Recovery involves the
development of new meaning
and purpose in one’s life as
one grows beyond the
catastrophic effects of mental
illness.”
(Anthony 1993)
There is no formula for
recovery
Everyone’s journey is unique and personal to them
but the experience of people who have rebuilt their lives following a diagnosis of
mental health problems suggest that 3 things are important :
• Hope
It is not possible to rebuild your life unless you believe that a decent life is possible and
you need people around who believe in your possibilities
•
Control
Taking back control over your life, your problems and the challenges you face, the help you
receive to overcome them and your journey of recovery
• Opportunity and participation
The chance to do the things that you value, access those opportunities that all citizens
should expect, and participate in society as an equal citizen.
We know that work can be central to
recovery
The opportunity to contribute, and to be recognised for that
contribution, to your community is particularly important - always
being on the receiving end of everyone else’s help is a dispiriting and
demoralising place to be
Work
• Is good for our health: unemployment increases the likelihood of developing mental
health problems and increases the likelihood of relapse
• Links us to the communities in which we live and enables us to contribute to those
communities: the opportunity to contribute is central to recovery
• Provides meaning and purpose in life
• Affords status and identity
• Provides social contacts
• Gives us the resources we need to do the other things we value in life
Helping people to gain/regain/retain employment is critical
in enabling people to become more than a ‘mental patient’,
a person with a present and a future ...
Employment ... a human right e.g.
• Article 23 of the United Nations Declaration of Human Rights
“Everyone has the right to work, to free choice of employment, to just and
favourable conditions of work and to protection against unemployment.”
• Article 27 of the United Nations Convention on the Rights of Disabled
Persons
• Article 6 and 7 of the International Covenant of Economic, Social and
Cultural Rights
Yet it remains a right that is denied many
people with mental health conditions
Most people with a mental health
condition want to work – highest
‘want to work’ rate of all
disabled people
(SEU, 2003)
But in the UK
• General employment rate = 72%
• Employment rate for all disabled people = 47%
• Employment rate for people with mental health conditions = 14.2%
(28% all mental health conditions
(8% for people with more serious mental health problems)
(Department of Work and Pensions, 2013)
‘But can they really work?’
Working with mental health conditions can be
challenging. They can
• affect your ability to negotiate the social world of work (rather
than the physical one) – need to think about
adjustments/supports to access social world of work
• often fluctuate and it is difficult to know when fluctuations will
occur – therefore need fluctuating adjustments and support
• are not immediately obvious and types of adjustment and
support people may need less well explored – therefore need
to provide more support to individuals and employers to think
about what sort of adjustments and support are needed
But often the biggest challenges are
fear, low expectations and failure to provide
the right kind of support ...
Fear on the part of the person, mental health professionals,
employment advisers, employers
• that getting a job may worsen your mental health
• that you will experience prejudice and discrimination at work
• that getting a job and moving off benefits may make you worse off financially
... and what happens if it does not work out that they will not be up to the job
• that they will be disruptive and difficult in the workplace
Low expectations
Nicola Oliver (2011) a woman with bipolar disorder
“My first obstacle was my employer. Ten days after I disclosed
my disability I was sacked.
“My second obstacle was my community psychiatric nurse.
He was lovely but recommended I consider only low stress jobs
and part time hours; maybe I could stack shelves in a
supermarket! I hadn’t studied for three degrees to stack shelves.
“My third obstacle was my psychiatrist. She told me that it was
unlikely that I would ever work again.”
Is it any wonder that with these messages from the
‘experts ...
“My fourth obstacle became my-self. I became ‘Nicola the
bipolar person’: incompetent, inadequate and worthless.”
“I was offered cognitive behavioural therapy to overcome my low
self-esteem, but the psychologist became my fifth obstacle.
She was adamant that I should stop yearning to return to work.”
Many would have given up at this point ... but Nicola
was determined despite all the negative messages
she continued to try to get work ....
But employment support agencies were no better ...
“I contacted a recruitment agent who told me I had a great CV ...
but she quickly became my sixth obstacle. When I explained
the gap on my CV was due to bipolar disorder I never heard from
her again.”
“The seventh obstacle was the charity I approached to help me
get into work ... I was told ‘maybe we should wait until you are a
bit better’.
“My final obstacle was a disability employment advisor who was
supposed to help me find work. She wanted to send me on a
confidence building course! I didn’t want training, I wanted a job.”
“If only ...
• someone had helped me reassure my employer I was still
worth employing.
• they had shown conviction that I could still achieve.
• I had met other employees with bipolar disorder to inspire
me to believe that one day I too could return to work.
What does the research tell us?
Frequently we ask questions like
– What makes people ‘employable’?
– How can we tell if someone is ‘work ready’?
– How ‘far from the labour market’ is this person?
These are the wrong questions – research shows:
– Diagnosis, duration, severity of problems) not reliably associated
with employment outcomes
– The only individual characteristics that influence employment
outcomes are ‘motivation’ and ‘self-efficacy’ (very much affected by
expectations of others)
The most important question: ‘what is the
right kind of support?
The most important variable determining whether people
can work is the type of support and adjustments provided
The 8 principles of ‘Individual Placement with
Support’ evidence based supported employment
for people with mental health conditions ....
1. Focus on open employment - real jobs – and a ‘can do’ approach
2. Do not select people on the basis of ‘employability’ or ‘work
readiness’ – help everyone who wants to have a go
3. Integrate employment support with treatment – treatment and
employment support must be done in parallel and Employment
Specialists must be part of clinical teams – sitting in the same office,
working together
4. Rapid job search (start within 4 weeks) rather than stepping stones
first. If training/experience are necessary, these should be in
parallel with job search.
5. Job search must be personalised and based on client preferences
- a person is more likely to get and keep a job that is in line with their
interests/preferences - and may involve active, individualised, work with
employers
6. Employers are approached with the needs of individuals in mind –
not just passive applications for jobs, but pro-active job finding - an
emphasis on building relationships with employers in order to access
the ‘hidden labour market’.
7. Time-unlimited , personalised support to both employee and
employer: Employment involves a relationship between employee
and employer and both parties may need support
8. High quality assistance with in and out of work welfare benefits
and financial planning
Need to do all of these things to be effective –
outcomes related to fidelity
Over 16 ‘randomised controlled trials’:
at least 60% of people with serious mental health
problems to successfully get and keep open
employment (see Bond et al, 2008, SCMH, 2009)
European Randomised Controlled trials of
IPS evidence based supported employment
• Six European Centres: London (UK), Ulm-Guenzburg (Germany),
Rimini (Italy), Zürich (Switzerland), Groningen (Netherlands), and
Sofia (Bulgaria)
• People included if they had schizophrenia of at least 2 years duration
and were unemployed
• IPS compared with existing ‘train-and-place’ vocational rehabilitation
service in each site
• Significantly more people receiving IPS gained
employment:
55% receiving IPS vs. 28% in existing service
• Significantly fewer people receiving IPS dropped out
13% receiving IPS vs. 45% in existing service
• Significantly fewer people receiving IPS were admitted
to hospital
20% readmitted in IPS vs. 31% in traditional service
And it’s not just research trials – IPS is effective in
regular day to day practice
The experience of South West London Mental Health NHS
Trust
Comprehensive community and inpatient mental health services for a
population of 1 million people living in South West London
(approximately 2600 staff serving 15,000 people at any one time)
Started recruiting Employment Specialists to work in clinical teams in
1999
By 2006 Employment Specialists in 11 Community Mental Health Teams
including the First Episode Psychosis Team and the Community Drug
Team
What do the Employment specialists do?
Employment Specialists ensure that vocational issues are addressed
as part of routine work within teams
•
Working with individuals
•
•
•
•
•
Work with the team
•
•
•
•
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
ensure that vocational issues are addressed at initial assessment
ensure that mental health professionals attend to work related issues in care plans
advise and assist other mental health workers in providing ongoing support
Work with employers and employment agencies
•
•
•
pro-active job finding – know local employers and local labour market
link with employment agencies, job centres and welfare to work programmes
support employers and advise them on adjustments the person may needemployment involves a relationship so need to support both parties
The results – in the year 2006/7
1984 people received vocational support from the teams
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
(Rinaldi and Perkins 2007)
Number of people supported in employment, mainstream education and voluntary
work in a London borough where IPS was implemented in all community teams
Team OTs supported by 1
Employment Specialist
140 4 teams
across
0.5 Employment
Specialists per
CMHT
1 full-time Employment
Specialist per CMHT
100
80
60
40
20
Open employment
Mainstyream education/training
Open employment
Mainstream
work experience/voluntary work
Mainstream education/training
Mainstream work experience/voluntary work
Apr-05
Feb-05
Dec-04
Oct-04
Aug-04
Jun-04
Apr-04
Feb-04
Dec-03
Oct-03
Aug-03
Jun-03
Apr-03
Feb-03
Dec-02
Oct-02
Aug-02
Jun-02
Apr-02
0
Feb-02
Number of people supported
120
Team OTs supported by 0.5
Employment Specialist across
4 teams
Number of people supported in employment, mainstream
education and voluntary work in a London borough where
IPS was NOT implemented
Open employment
Mainstream education/training
Mainstream work experience/voluntary work
And they were not all stacking shelves
Wholesale
manager
Accountant
IT assistant
Mental health
development
worker
Ward assistant
Bookmaker
Call centre
handler
Retail assistant
Receptionist
Hairdresser
MH advocate
Occupational
therapy assistant
Accountants officer
Catering
assistant
Chambermaid
Cleaner
Hotel Porter
Labourer
Leaflet dropper
Plumber’s
assistant
Post assistant
Recycling
assistant
English Teacher
Actor
Journalist
Admin worker
Credit controller
Project worker
(private sector)
IT Helpdesk
Admin Assistant
Civil servant executive officer
Baker x2
Carpenter
Caretaker
Hairdresser
Sales Assistant x8
IT Support desk
Administrator
Decorator
Cleaner
Street cleaner
Warehouse
worker
Market research
administrator
Care assistant
Civil Servant
(administrator)
Production
assistant
Assistant special
needs teacher
Administrative
assistant x5
Regeneration
project worker
Glazier
Plumber
Catering manager
IT trainer
Nurse
Health records
officer
Hairdresser
assistant
Indian Restaurant
waiter
Leisure assistant
Driver
Bar work
Barista
Sales Advisor
Boatyard worker
Café Assistant
Catering assistant
Teaching assistant
Social worker
Youth Worker
Financial controller
(Perkins et al, 2006)
And it works in primary care services for people
who have common mental health problems
London Borough of Wandsworth Primary Care IPS Employment Service
• 1st September 2009 – 31st August 2010
– 259 referrals (93 didn’t want the service, 24 waiting to engage)
– 142 actually fully engaged
– 108 gained employment or retained employment following a period of sickness
absence (74% if those who received support, 42% of total referrals)
• 1st September 2010 – 31st August 2011
– 458 referrals:
– 274 patients fully engaged (25 didn’t want the service, 159 waiting to engage)
– 231 gained employment or retained employment following a period of sickness
absence (84% of those who received support, 50% of total referrals)
(Stephen Charlery, Wandsworth Primary Care Employment Service Annual Report)
Employment rate in addictions teams with and without an
employment specialist
35%
(2009/10 data)
30%
25%
20%
15%
Paid employment
Education
10%
Voluntary work
5%
0%
London Borough of
Wandsworth
Community Drug
Team
London Borough of Addiction Treatment
Merton Community
centre
Drug Team
Employment Specialist
No Employment
Specialist
If we really address employment and education right from the start
the results are even more impressive
Typical Picture: 50% in employment or education at first admission - only 20% a year
later … but it doesn’t have to be this way
Individual Placement with Support in First Episode Psychosis
South West London: (mean age 21 years)
After 2 years 73% in employment (48%) or mainstream education (25%)
(Rinaldi et al, 2010)
From Rinaldi et al (2010) First episode psychosis and employment: A review. International Review
of Psychiatry, April 2010; 22(2): 148–162
In England an increasing number of mental health
organisations provide IPS evidence based supported
employment and there is a network of ‘Centres of
Excellence’
• A great deal of money is still invested in non-evidence based vocational services:
sheltered work, pre-vocational training
– Within health and social care services
– Within disability employment programmes run by the UK Department of Work and pensions
• Disability employment services do not offer evidence based support and do not serve
people with mental conditions effectively:
– 43% of incapacity benefit claimants (IB/SDAESA) have a mental health condition
• Access to Work: 2.7% have a mental health condition (April 2013 statistics)
• Work Choice: 0.7% of those starting have ‘serious mental illness’; 10.6% have mild to
moderate mental health condition (August 2013 statistics)
Why aren’t we offering what we know works?
Why aren’t we offering
what we know works?
Failure to prioritise employment for people with mental
health conditions and lack of ‘joined up working
– Employment not considered a realistic goal for people with more serious
mental health problems
– Employment not seen as a priority for health and social care services- not part
of their ‘core business’
– People with mental health conditions not seen as a priority for employment
services
– Health and employment services (and social care services and welfare
benefits services) do not work together therefore confused and contradictory
policies and messages to clients
Failure to implement it properly
– Ignorance of the research evidence
– Investment (personal and financial in existing ways of doing things
– People do not believe the research evidence
IPS evidence based supported employment
principles challenge some commonly held
assumptions...
Common assumption: people need to be fully ‘better’ before they
can return to work:
treatment then rehabilitation then then work
The reality: You don’t have to be fully ‘better’ to work and
the longer they are out of work the less likely they are to return
(without special support): 6 months absence – 50% return; 12
months absence – 25% return; 2 years absence – 2% return
(British Society of Rehabilitation Medicine)
Common assumption: ‘stepping stones’ - people need to build
up their qualifications , skills and confidence in a safe, sheltered
setting they will be able to move on to open employment
The reality: people learn that they can only work in a safe,
sheltered setting and never move into work
People need ‘water wings’ –
support to keep them afloat
in employment - rather than
‘stepping stones’!
There are 8 principles of IPS.
Many existing UK services say
‘we are already doing MOST of those things’
but you’ve got to do them all!
• The higher the fidelity the better the outcomes
• The higher the fidelity the greater the cost effectiveness (NDTi, 2014)
– Average cost per person supported
• Evidence based sites = £1,170
• All sites = £1,730
– Average cost per job outcome
• Evidence based sites = £2,818
• All sites = £8,217
• Do we really have a ‘can do’ attitude?
• Are we still ‘selecting’ who we help on the basis of our
judgements about ‘employability’?
• Are employment workers really integrated into clinical teams
– there at assessment and review meetings, writing in the
same notes ...?
• How proactive are we at ‘job-finding’? Do we really know our
local employers?
• How good are we at really providing access to timeunlimited support?
• How good is our advice on welfare benefits?
We also need to ask ‘what sort of support within the 8
principles?
• ‘Job retention’ is as important as getting a job ... and does not
always mean staying in the same job. Retention may mean going back to
the same job, or a different job with the same employer, or changing your job.
Working patterns are changing and we now see people change jobs more frequently.
• Help when the person or their employer needs it ... help needs to be
there when problems occur (not having to wait for appointments): the role of
telephone support
• Sometimes need someone to actually go into the workplace but most
help provided outside work
• Help with all the things around work (like getting up, getting to work etc.)
• Help to sort out problems outside work that may jeopardise the person’s
ability to work
• Motivational interviewing (in conjunction with IPS) directed at clinical staff
to address ambivalence about employment improved patients’ occupational
outcomes: doubled the number of people who gained open
employment in first episode psychosis services (Craig et al 2014)
• Managing symptoms and problems in a work context – a work
health and well-being plan
What the individual and their manager can do:
–
–
–
–
–
Keeping on an even keel at work
Managing things that you find difficult at work
Managing ups and downs
Crisis plans
Plans for returning to work after a crisis
These plans
•
•
Increase confidence of employee and employer
Offer a way of managing a fluctuating condition at work and planning fluctuating adjustments
and supports
•
Peer support. Often people who have faced similar challenges are the best ones to
provide support AND seeing what others have achieved can increase motivation and selfconfidence. For example:
– employing people with lived experience as Employment Specialists
– sharing experience through sharing stories
– ‘job clubs’
– peer mentoring
– peer led support groups
• Time limited ‘work experience’ or ‘internships’ in parallel with job
search and in real employment settings. Can increase the confidence of the
individual and show employer that people can work effectively.
•
•
Starting work gradually and building up hours over time
Starting small and building up. Most people start their working lives in
‘marginal’ jobs (casual work, seasonal work, delivering newspapers etc.) ... but then
move on in their careers. Big dreams and little steps! Not just jobs but careers!
• Not just ‘9 to 5’ . There are many ways of working ...
– working from home
– working part time (maybe only a few hours/days per week)
– self-employment
• Matching the job and the person
• Adjustments in the workplace, for example:
–
–
–
–
–
–
–
Additional supervision/feedback
A mentor among other employees
Adjustments in duties – relief from some ‘non-central’ parts of the job
Written instructions
Somewhere quiet to work ... or somewhere to go if it is all getting too much
Working particular hours (e.g. only mornings/evenings)
Flexible hours
But most of all we must raise our expectations
Many people have been discouraged from working
by mental health workers believing that they are too ill to
work or that the stress of work will make their condition worse
For example, Rinaldi, 2001: 40% of people in work had been told by a mental
health professional they would never work again
Low expectations destroy motivation, destroy
possibilities destroy hopes and dreams …
Paul (in Perkins et al 2009)
“I grew up on a rough council estate in South London, left school at 15 to work in
the construction industry and got into drugs. One crappy weekend my girlfriend of
three years decided to dump me … and this led to 4 sleepless nights and some
dark, paranoid experiences. Eventually I broke down and was compulsorily
admitted to psychiatric hospital, I was a 17 year old boy and my only knowledge
of mental health was images of psychos and nutters from the television and
papers. The stigma and shame consumed me for the next 4 years. I was on a
self-destructive binge of drugs and alcohol that led to repeated admissions, a total
of 18 months on a section and a psychiatric diagnosis.
When I said I wanted to work I was told it was an unrealistic goal, that I was
too sick and the stress would be too much. I was introduced to a man who
offered me a job in a sheltered work project putting together plastic goods … for
someone who used to work in the construction industry this was not an attractive
offer.
I rejected it and gave up he idea of work. I lived with no hope of a future.”
Eventually he became so disillusioned with services he disengaged and got himself a job,
but without psychiatric support he broke down again and was sacked.
Finally he met an IPS employment worker and was successful in gaining employment …
he has had occasional short periods in hospital but with the help of the Employment
Specialist has got back to work quickly and worked out ways of managing his problems at
work more effectively … 10 years ago he became an Employment Specialist
“I have been an Employment Specialist for 6 years. I will always have a severe and
enduring mental health problem, but this is no longer my life. I am a mental health
professional.
The passion I have for my career is immense. A job defines you, provides money,
social networks, relationships, confidence satisfaction, personal fulfilment and a
sense of achievement. This is what I am, and this is what I do, I am no longer a
mental health condition. Never lose sight of the light at the end of the tunnel, if it’s
not there, look for it because it may not find you.”
Since this time he has been promoted to lead IPS services in a London Borough - a job
he has done for the last 4 years
The 4 ‘R’s for health workers
• Respond positively to questions about work
• Raise issues of employment
• Recommend appropriate employment as good for
recovery … and help the person to retain or gain
employment as far as you can, and
• Refer to someone with more employment expertise
and work together to help the person to fulfil their
vocational aspirations
It may not be easy but it really is worth it!
“I have re-entered full-time employment. Over a year later I am still
working. I now focus more on opportunities in life and less on my
condition. I regularly socialise with my colleagues after work and
actually feel content to be a taxpayer again … The support has been
immeasurably important …[it] has enabled me to make the journey
towards recovery and realise my aim of contributing to society again
through fulfilling employment.”
“Now I’m a contributing member of society because of my employment.
It’s worth is altering the life of someone with a mental illness … helping
me to change direction from hopelessness to being worthwhile.”