1. 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

2. 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

3. 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 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

4. 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

5. 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 Professionals do not hold the key to recovery

6. 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

7. 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)

8. 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?

9. 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

10. 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

11. 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)

12. 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

13. ‘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)

14. Competitive employment rates in 16 randomised controlled trials of supported employment

15. 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)

16. 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

17. 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

18. 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 Mainstream work experience/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:

19. Team OTs supported by 0.5 Employment Specialist across 4 teams Open employment Mainstream education/training Mainstream work experience/voluntary work Number of people supported in employment, mainstream education and voluntary work in a borough Individual Placement with Support not implemented

20. 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 …

21. Early Intervention for First Episode Schizophrenia including ‘Individual Placement with Support’ After the two years 73% in employment or mainstream education/training

22. 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

23. 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

24. 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’

25. 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 1 st January 2008 86% continued in employment or professional training

26. 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

27. 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...

28. 2007

29. 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)

30. 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?

31. 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

33. 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

34. 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)

35. 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