Transcript Document

Getting your life back:
The role of employment in recovery
Rachel Perkins
Director of Quality Assurance and User Experience
South West London and St George’s Mental Health
NHS Trust
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 you’re alive or dead .” (Bird, 2001)
• Loss of confidence and self-belief
• Feel very alone and very frightened
But it doesn’t 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 primeminister 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
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
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 one’s attitudes,
values, feelings, goals, skills and roles…The development of
new meaning and purpose in one’s 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
What helps people in their journey of recovery?
There is no formula for recovery Everyone’s 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
Recovery is impossible without hope
If you can’t 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)
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?
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
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
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)
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
‘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)
Competitive employment rates in 16 randomised
controlled trials of supported employment
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
2007 1996 1994 2007 2004 2005 2006 2006 1999 2007 1995 2007 2006 2000 1997 2002
Aust NH NY
IL
CT HK SC MA DC CA IN EUR QUE NY CA MD
Supported employment
Control
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)
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
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
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
140 4 teams
across
0.5 Employment
Specialists per
CMHT
1 full-time Employment
Specialist per CMHT
Number
of people
supported
Number
of people
supported
140
120
120
100
100
80
80
60
60
40
2040
Apr-05
Feb-05Apr-05
Open employment
Mainstyream education/training
Mainstream
work experience/voluntary work
Open employment
Open employment
Mainstreameducation/training
education/training
Mainstyream
Mainstream
work
experience/voluntary
workwork
Mainstream
work
experience/voluntary
Oct-04
Dec-04
Dec-04Feb-05
0
Feb-02
Feb-02
Apr-02
Apr-02
Jun-02
Jun-02
Aug-02
Aug-02
Oct-02
Oct-02
Dec-02
Dec-02
Feb-03
Feb-03
Apr-03
Apr-03
Jun-03
Jun-03
Aug-03
Aug-03
Oct-03
Oct-03
Dec-03
Dec-03
Feb-04
Feb-04
Apr-04
Apr-04
Jun-04
Jun-04
Aug-04
Aug-04 Oct-04
020
Team OTs supported by 0.5
Employment Specialist across
4 teams
Number of people supported in employment, mainstream
education and voluntary work in a borough Individual
Placement with Support not implemented
140
100
80
60
40
20
0
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4
Ju
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g04
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5
Number of people supported
120
Open employment
Mainstream education/training
Mainstream work experience/voluntary work
Open employment
Mainstream education/training
Mainstream work experience/voluntary work
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 …
Early Intervention for First Episode Schizophrenia
including ‘Individual Placement with Support’
After the two years 73% in employment or mainstream education/training
60
Pertcentage
50
40
30
20
10
0
start
6 months
12 months
18 months
24 months
Open Employment
13
35
44
48
48
M ainstream
education/training
25
34
28
33
25
Unemployed and
unoccupied
27
6
6
3
6
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
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
Types of objections raised
• ‘What about transference – will they be objective?’
• ‘What about confidentiality? They will have access to
people’s psychiatric records’
• ‘Mentally ill people will be taking our jobs’
• ‘Won’t they be unreliable?’ ‘Won’t they be off sick all
the time?’
• ‘Won’t they be dangerous – a risk to clients?’
• ‘What happens if they go mad at work?’
• ‘We won’t be able to tell jokes in ward rounds any more’
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% >= 1 psychiatric admission)
– 66% in clinical positions, 27% administrative/managerial, 7% support services
– 22% in posts requiring professional mental health qualification
– At 1st January 2008 86% continued in employment or professional training
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
Beware - if you come to work in South West
London you don’t 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 ...
2007
35%
31%
30%
25%
24%
21%
21%
Recruits to
bands 1-4
Recruits to
bands 5-7
20%
15%
10%
5%
0%
Recruits to
bands 8-9
All recruits
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 O’Hagan, 2007)
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 people’s own stories rather than
diagnosis …’What has happened to you? rather
than ‘What is wrong with you?
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
Significantly higher 'Opportunity to talk
about worries and concerns' scores
12
10
8
6
4
2
0
11.4
8.4
Significant higher 'Support in recovery'
scores
27.6
28
26
24
23.4
22
20
NOT spent time with Peer
Support Worker
Spent time with Peer Support
Worker
NOT spent time with Peer
Support Worker
Spent time with Peer Support
Worker
Significantly larger proportion showed increase in
'Hopefulness about the future'
60%
50%
40%
30%
20%
10%
0%
56%
20%
NOT spent time with Peer Support Spent time with Peer Support Worker
Worker
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
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.”
(O’Hagan, 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.” (O’Hagan, 2007)
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