1. Making a Reality of Employment for People with Mental Health Conditions Rachel Perkins BA, MPhil (Clinical Psychology) PhD, OBE rachel.e.perkins1@btinternet.com

2. A view from 5 perspectives 33 years working in UK NHS mental health services 25 years using mental health services and working with a long-term mental health condition 15 years employing people with mental health and related conditions within UK NHS mental health services 15 years experience of developing evidence based programmes (IPS) to help people with more serious mental health conditions (including dual diagnosis) to gain and retain employment Leading a review to the UK Government ‘ Realising Ambitions. Better employment support for people with a mental health condition ’ (2009) and various advisory roles with the UK Department of Work and Pensions and Department of Health

3. We know the devastating consequences of unemployment for people with mental health problems “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)

4. Too many people with mental health conditions become ‘I used to be’ people … ‘I used to be a student, a taxi driver, a football player, a bank manager … but now I am just a mental patient’ The identity of ‘mental patient’ too often replaces all other valued roles Too often people with mental health problems end up on the receiving end of help from everyone else – and this can be a very demoralising and dispiriting place to be

5. Everyone who experiences mental health problems faces the challenge of recovering a meaningful, valued and contributing life … and we know that work can be central to this “A job defines you … this is what I am and this is what I do, I am no longer a mental health condition.” “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 tax-payer again … realise my aim of contributing to society again.”

6. Work… links us to the communities in which we live and enables us to contribute to those communities 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 … and it is good for our health – both physical and mental: unemployment increases the risk of many physical health problems and premature death appropriate employment reduces the risk of developing mental health problems and reduces symptoms (both positive and negative), decreases the likelihood of relapse and decreases use of mental health services

7. The right to work – a human right Article 23 of the United Nations Declaration of Human Rights (1948) “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 (2007) recognises “ the right of persons with disabilities to work, on an equal basis with others; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities. States Parties shall safeguard and promote the realization of the right to work, including for those who acquire a disability during the course of employment.” Article 6 and 7 of the International Covenant of Economic, Social and Cultural Rights “States Parties to the present Covenant recognize the right to work, which includes the right of everyone to the opportunity to gain his living by work which he freely chooses or accepts, and will take appropriate steps to safeguard this right.”

8. Yet it remains a right that is denied many people with mental health conditions In the UK Most people with a mental health condition want to work – highest ‘want to work’ rate of all disabled people (SEU, 2003) and the lowest employment rate General employment rate = 71.6% Employment rate for all disabled people = 46.9% Employment rate for people with mental health conditions = 14.2% (Department of Work and Pensions, 2013)

9. ‘But can they really work?’

10. The 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 “I get slightly paranoid at times – think everyone is talking about me. That’s when I need support.” They often fluctuate and it is difficult to know when fluctuations will occur – therefore need fluctuating adjustments and support “I had a couple of months when I didn’t need any help, then a couple of weeks ago everything seemed to go wrong.” “It’s having someone there when you need them – that’s what enables me to keep going.” They are not immediately obvious and engender fear because of the myths that surround them (dangerousness, incompetence etc.) – therefore need to break down myths 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 The challenge of working with a mental health condition are often different from those facing people with physical impairments

11. But often the biggest challenges are fear, a culture of 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 you don’t have the skills to manage their problems – better leave it to the experts that they will be disruptive and difficult in the workplace

12. A culture of low expectations … on the part of health professionals, employers, employment agencies and society as a whole … and people with mental health conditions themselves ‘ It’s a well known fact that people with schizophrenia/addiction problems cannot work’ Nicola Oliver (2011) a woman with bipolar disorder describes the barriers she experienced … “ My first obstacle was my employer. Ten days after I disclosed my disability I was sacked.”

13. “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.”

14. 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 [private] 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 [mental health NGO] 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 [Department of Work and Pensions Job Centre Plus] 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.”

15. “ 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.”

16. What does the research tell us? Frequently we ask questions like What makes people employment? 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)

17. 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....

18. 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

19. 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

20. 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)

21. 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

22. 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

23. Employment Specialists’ ensure that vocational issues are addressed as part of routine work within teams Working with individuals 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 Work with the team: 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 need- employment involves a relationship so need to support both parties

24. The results 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)

25. Employment rate in addictions teams with and without an employment specialist (2009/10 data)

26. 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 From Rinaldi et al (2010) First episode psychosis and employment: A review. International Review of Psychiatry, April 2010; 22(2): 148–162 South West London: (mean age 21 years) After 2 years 73% in employment (48%) or mainstream education (25%) (Rinaldi et al, 2010)

27. 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 they were not all stacking shelves

28. So why aren't we doing it? What are the barriers? The UK experience

29. Employment not seen as a priority within most mental health and social care services - not part of their ‘core business’ … therefore largely ignored in treatment and support plans English national patient survey 2013 27% definitely received help with finding or keeping work 43% said they would have liked help but did not get it People with mental health conditions not seen as a priority for ‘welfare to work’ and specialist disability employment programmes for those facing the greatest barriers to work 43% of people receiving out of work benefits have mental health problems Access to Work programme (serves around 30,000 people in total): 3.2% have a mental health condition Work choice programme (serves around 9,000 people in total): less than 1% serious mental health condition, 12.8% ‘mild to moderate’ mental health condition (depression/anxiety)

30. Many people are ignorant of or disbelieve the evidence – in the UK there is an enormous investment (personal and financial) in existing ways of doing things - especially sheltered work and pre- vocational training IPS evidence based supported employment principles challenge some traditional assumptions that are commonly hel d among professionals, employers, the ‘general public’ and people with mental health conditions...

31. The reality: very few people move from segregated, sheltered settings and prolonged ‘pre- vocational’ training into open employment 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’! 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

32. The reality: If you don’t help a person to keep their job when they develop mental health problems or relapse they are likely to lose their job and have no job to go back to when they are ‘better’ The longer they are out of work the less likely they are to return: 6 months absence – 50% return; 12 months absence – 25% return; 2 years absence – 2% return ( British Society of Rehabilitation Medicine) You don’t have to be fully ‘better’ to work If you provide the right kind of employment support while the person is receiving treatment, they may well be able to stay at work or only take a short period off work Common assumption: people need to be fully ‘better’ before they can return to work - we must treat people’s mental illness before you think about work

33. Have we got the right model? Illness or disability? If we are to help with mental health conditions to work we can: Focus on trying to ‘ change the person so they fit in’ : treat symptoms and addiction issues, remedy cognitive deficits, train people in necessary skills, reduce anxiety... Focus on trying to ‘change the world so that it can accommodate the person’ assume that the person’s difficulties are ‘given’ and remove the environmental barriers - social, cultural and physical – that prevent the person from working Mental health services tend to focus on ‘changing the person so they fit in’ – treatment and therapy to eliminate problems It is important to try to treat symptoms BUT many people have mental health and related problems that recur or are ever present … and no amount of treatment reduces the prejudice and discrimination that surround mental health problems If people with ongoing or recurring problems then we need a different approach... and we might have something to learn from the broader disability world and the ‘social model of disability’ …

34. Parallels with physical impairment: a social model If a person has ongoing (or recurring) impairments then we must look to removing the environmental barriers that disable them “The social model of disability is about nothing more complicated than a clear focus on the economic, environmental and cultural barriers encountered by people who are viewed by others as having some form of impairment - whether physical, sensory or intellectual” “It is attitudes, actions, assumptions – social, cultural and physical structures which disable by erecting barriers and imposing restrictions and options. Disability is not inherent.” (Oliver,2004). The ongoing or recurring cognitive, emotional and behavioural problems of someone with mental health problems are parallel mobility impairments, visual impairments, hearing impairments etc.

35. A social model makes us think differently about how we can help people with mental health problems to get and keep employment Replace: ‘what are the person’s problems’ and ‘how can we get rid of these’ With: ‘what are the barriers’ (attitudes, expectations, assumptions – social, cultural and physical structures) and ‘how can we get around these’ What support might they need? (the mental health equivalent of the wheel chair, the assistance dog or sign language interpreter... ) What adjustments might they need? (the mental health equivalent of the ramp, lift, hearing loop, signs in brail) How can we break down prejudice and discrimination that stop people being recruited to jobs?

36. What sort of adjustments and support might people need within the 8 principles of IPS? ‘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 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

37. Someone to go in and help the person at work. Like a ‘job coach’ for someone with learning disabilities or a sign language interpreter for someone with a hearing impairment – maybe episodically when the person’s condition fluctuates) or even someone who can work for them if they are not able to (as in Clubhouse’ approach in the USA)? 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 self- confidence. 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.

38. ‘Surviving and Thriving at Work’ Health and well-being at work plans... ‘A Work Health and Well- being Toolkit’ and ‘Going Back to Work After a Period of Absence’ Dr Rachel Perkins OBE Published by Disability Rights UK ben.kersey@disabilityrightsUK.org 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 May be useful for all employees!

39. 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 Not just jobs but careers... the importance of mentoring in relation to career development (see RADIATE in UK as an example of peer mentoring) 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

40. But most of all we must raise our expectations Despite the evidence, many people – mental health workers, employment workers - simply do not consider employment a realistic goal for people with serious mental health conditions “When I said I wanted to work I was told this was an unrealistic goal, that I was too sick and the stress would be too much.” Low expectations erode hope and limit possibilities …

41. “The greater danger for most of us lies not in setting our aim too high and falling short, but in setting our aim too low and achieving our mark.” “... grant that I may always desire more than I can accomplish.” Michelangelo (1475-1564) “There’s a better life out there... If you just sit back, then you won’t make it – but you can make it if you want to. You’ve got to be real with yourself. The power is you.” (Nash Momori, 2008)

42. 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.” “My passion for my career is immense. A job defines you, provides money, personal fulfilment and a sense of achievement. This is what I am, this is what I do, I am no longer a mental health condition.” “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.”