Recovery, Rehabilitation and Employment for People with Mental Health Issues Rachel Perkins BA, MPhil (Clinical Psychology) PhD, OBE 10 th 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 poor unfortunate – unable to make decisions for themselves – need to be looked after for their own good  ‘Mad axe murderer’ – dangerous, unpredictable - need to be looked after for everyone else’s 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 The popular perception …

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 …’ “… 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) “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)

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 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) It is possible to recover a meaningful, satisfying and contributing life Recovery is about rebuilding your life

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 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

The results – in the year 2006/ 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)

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 London borough where IPS was implemented in all community teams

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 London borough where IPS was NOT implemented

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

And it works in primary care services for people who have common mental health problems London Borough of Wandsworth Primary Care IPS Employment Service 1 st September 2009 – 31 st 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) 1 st September 2010 – 31 st 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 (2009/10 data)

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)

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?

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 time- unlimited 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 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. 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.”