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Gaining insight from experience:what are service users
saying about employment?
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Context The benefits of employment for people using mental health services are now widely documented, but there is little agreement on the terms or concepts, who should be providing it, how, what works best and who for? The most valuable source of evidence into what is most helpful comes from the experiential insights of service users (Faulkner and Layzell, 2000). The challenge for providers is how to gather these insights, and then how to turn them into services. Having listened to people using local mental health services talk about their experiences of trying to get into work, we felt the need for an event that would give them a chance to express their views. It was vital to adopt a user-led approach, so we worked in partnership with two local user groups and a service user-led research project. Together we organised a ‘Work Opportunities Day’, and invited all local service users and service providers. The event was held at a day centre and about 70 service users attended. The day started with a well-attended morning information session with local providers. After lunch, the providers left and the afternoon was devoted to exploring three questions in user-facilitated focus groups. To gain an accurate picture we asked questions we feel are relevant to any locality. |
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Question 1: What do you think of services offering work and training locally? People said that there is not enough accessible information and advice: ‘There is no clear, well-advertised way of informing us of the opportunities available’. Consequently it is pure chance where people end up. It is clear that information distribution needs to be co-ordinated by one agency. People will not even begin to embark on an ‘employment journey’ if they don’t know where to start. Claiming benefits was a source of stress and anxiety, often acting as a major obstacle: ‘There is a fear amongst users that if we demonstrate our abilities to study or work, our benefits will be affected. Some have come under pressure by having to attend medical tribunals to prove their incapacity – leading to further breakdowns’. The system is rigid and inflexible, and does not take into account people’s individual circumstances. Based on the experiences of service users, the new system needs a complete overhaul. The local adult education service was valued, but people requested ‘access to a greater range of courses’. Currently there are 22 Return to Learning courses, with plans for bridging classes into mainstream education. The local college also provides an open access walk-in support and enrolment group. Participants identified the role of health care staff and their practice as a vital determinant of whether people get an opportunity: ‘Work should be an integral part of any care plan – not an afterthought’. As well as being a priority, work opportunities need to be individualised: ‘The abilities of users and survivors can vary from person to person and from time to time. Many of the employment opportunities available do not take account of this’. Many opportunities are entry-level, and come under the umbrella of ‘the four Fs’ (Parkes and Downer, 2001) - food, flowers, folding and filth: ‘The kind of work offered does not take into account our considerable and varying skills’. People emphasised the importance of recognising differences in race, age and gender regarding employment: 'I believe a one-size-fits-all policy should be avoided'. Some older participants highlighted the problems they face: 'Hard to get jobs at older age'. |
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Question 2: What new services would be most helpful? To some people, 'Having a job' was what mattered, not services. As a path to employment, access to voluntary work was also valued. However, serious obstacles were identified: 'A lack of understanding of mental distress by many employers, who think such people are also unintelligent and untrustworthy. They need mental health awareness training, to enable them to employ people – especially large companies'. Several positive comments showed that aspects of some current services are valued, but there were calls for better communication between them and changes to the way they work: 'Sort out the old services before we think of anything new'. People wanted access to work opportunities wherever they find themselves within the system: 'Hospital-based treatment should be work-skill focused, not a time waster'. There should be better advice available to inform choices, e.g. at G.P.s’ surgeries, wards, or in the community. Participants requested access to a greater range of ordinary services, rather than relying wholly on mental health services: 'Not just services for people with a mental health diagnosis – if we always act different they will treat us different'. There were differing views about the value of gaining jobs in mental health services: 'It can be a good idea for people with mental health problems to work in the mental health sector. Can also be difficult'. In contrast, people wanted access to ordinary jobs: 'Want the choice to do normal work, not just in mental health'. To address the need for comprehensive information, one person suggested that: 'There should be a central point locally, dedicated to vocation – any service user who expresses an interest should be able to access this service'. A printed directory and database of all services was felt to be necessary. Suggested changes to existing day care provision included: 'More employment and training services should be available at the day centre', and 'People teaching their skills to others'. |
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Question 3: What role can service users and user-led organisations play in developing/running new services? Although government and organisational policies promote user involvement, actual user-led services remain rare. However, participants described a wide range of roles that they could perform in service provision, if given the chance: 'Users to run a central employment service that has several businesses, e.g. a telephone helpline re. employment opportunities ... Pool of workers to be set up to provide services from a centre'. As well as running employment services, some people wanted to provide care for others: 'Users can run safe houses for people in distress (gender, ethnic, sexuality specific)'. People are already involved in facilitating/teaching groups and classes at the local college, with considerable success – they are very popular with students. But it was felt that more of these roles should be available. At present, user involvement generally is limited to consultation, sitting on interview panels, etc. People not only wanted to be paid well for this, but also to move beyond involvement. A challenge to local providers came in this form: 'Set up a user-led work project funded by [the local NHS Trust]' |
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Challenges to the systemWe found that adopting a user-led approach to consultation within groups enabled people to say what they really felt. In particular, the destructive psychological impact of material and social inequalities created angry feelings among many participants: 'Get rid of all Council employees and health/social care staff', and 'Change the whole structure'. The unequal power relations with staff were highlighted: 'Users don't have enough influence or strong enough voice', and 'We should tell them what we want, rather than them telling us'. User involvement is often promoted as a way of improving services and addressing inequalities. However, the way it tends to be structured is in favour of organisational interests, if nothing changes as a result of the involvement. This can lead to disillusionment with the process: 'This user involvement thing is turning into a bit of an old-style freak show. Gather the users up like performing seals, feed them, pay them £10, then tell them to fuck off back onto benefits'. People said that providers need to be more sensitive and attuned to the person, not the label or diagnosis: 'Just listen to users'. 'To be treated as a human being'. There are also struggles with poverty: 'We are not allowed to earn enough money'. Currently people living in hospital have to survive on £15 a week. There were also concerns about clarifying the rights of people using mental health services: 'Fighting for our rights – but this is frustrating, having to fight all the time'. |
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Summary ‘[freedom] is the capacity to participate effectively in shaping the social limits that define what is possible’ – Hayward (1998, p21). The evidence described here is drawn from the direct experience of people using mental health services. They have clearly identified a wide range of issues and themes for action. Service providers and policy-makers must take views such as these on board, as they could form a solid basis for practice and service development. If providers cannot fill the space for change with the direct experiential insights of service users, what is that saying about the exercise of power? One participant in the consultation said: 'Nothing will change’. Will providers prove her wrong? Contact information Mark Bertram or Peter Linnett, Carpet
Cleaning Care, Acknowledgements Thanks to all the people who participated in the event and Yan Weaver (Lambeth MIND), Ray Brett (South London User Research Project, S.L.U.R.P.), Carole Myers (Lambeth User Voice, L.U.V.) for insightful advice and help. References Faulkner, A. and Layzell, S. (2000) Strategies for Living: A Report of User-Led Research into Peoples Strategies for Living with Mental Distress. London: Mental Health Foundation. Hayward, C.R. (1998) De-facing power, Polity, 31, 1, 1-22. Parkes, T. and Downer, B. (2001) Can you help me through the looking glass? Bedlam Consultancy and Consumer Consultancy. First published in Life in the day Volume 7 Issue 4 |
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