Q3 Do you think people with mental health problems want, and feel able, to work? Why/Why not?

This could be interpreted to be a politically loaded question and the answer very much depends on a number of factors. Firstly, the kind of work. For example it is important to remove discriminatory barriers which prevent people working but if a particular paid job situation increases stress then a person may prefer to engage in voluntary work. Secondly, it is important to recognise that people’s ability to work may change over time and that the choices they make at one point may change in the future. Unfortunately employment structures and the benefit system are not flexible enough and not sensitive enough either to service users’ needs at different points or to different work contexts. Thirdly, at the present moment there are too few supported employment schemes and we have insufficient information about the best models of practice although a variety of projects and policies in mental health agencies have a wealth of good ideas. Finally, more generally, we know that many work environments do not promote mental well-being. Indeed it is the very hostility of some work environments which has contributed to or caused some service users’ mental health problems.

Q4 What are the main barriers to employment for adults with mental health problems?

a) Discriminatory practices and assumptions which can make people feel stigmatised. For example, the job application process needs to be designed more sensitively (eg redesign of application forms).

b) A loss of confidence as a result both of mental health problems but also enforced absence from work as a result of inflexible working practices.

c) A lack of support (eg a lack of supported employment workers in Community Mental Health Teams).

Q5 What is the typical experience of adults in work who have mental health problems?

Many people talk of having to lie to their employers and co-workers about their experience of mental health problems. They feared a number of different things. For example, they were aware that people they knew had been sacked following being open about their mental health problems. They were also worried in case anything they did was seen as related to their mental health difficulties (eg a legitimate disagreement with a co-worker might be seen as a ‘symptom’ of their mental health problem). Many people found that it was difficult to talk both to managers but also co-workers about their difficulties. There is an urgent need to provide workplace policies to change attitudes about mental health as well as training and education. For example, it is important that the general public are reminded that mental health problems lie on a continuum and that the world isn’t divided into ‘normal’ people and ‘mad people’. Training should highlight the fact that many members of the public will themselves have experienced mental health problems or will have a friend or relative who has and thus they will realise that a simple ‘them and us’ assumption about mental health is inaccurate. However, we thought that it was very difficult to generalise and that people’s experiences varied as a result of other aspects of their identity (eg their gender, age, sexuality, class, skin colour and cultural background).

Q6 How often do you think adults in work lose their jobs following the onset or relapse of mental health problems, and for what reasons?

We think this happens quite a lot. Often just hearing that someone has a psychiatric diagnosis can be a reason for employers to make someone redundant often on spurious grounds. For example a doctor’s sick note may include mention of a psychiatric diagnosis. Sometimes this can happen after a prolonged period off sick. This can be compounded if the workplace environment is stressful and the person does not feel confident that they will be able to cope if they return especially if their employer expects them to cope immediately with their previous level of work. Many people find it hard to talk honestly with their employers often because they have legitimate concerns about their attitudes to mental health problems. Sometimes people may be working too hard and they need a sensitive employer to suggest taking on less work – it is rare to find such an employer. Unfortunately it can be very hard to prove that someone has lost their job in this way. Employers have several strategies to hide this fact – for example by reorganising the workplace such that the post is no longer required. Declines in the numbers of people joining unions and a decreasing willingness to defend employees’ rights by unions ia another contributory factor.

Q7 What is the best way to help adults with mental health problems find and keep work? Please give details of any examples of good practice or promising approaches.

There are a number of different strategies which may be helpful. It is unlikely that the same solution will work for everyone – instead there should be a range of flexible initiatives. These might include the provision of training to employers which should also include ‘shop-floor’ staff as well as different levels of management. There is also a need for adequate support for people at work including dedicated supported employment staff working from mental health teams and buddies (eg from independent from advovacy groups). It is important that people are offered a graduated return to work so that they can rebuild their confidence over time. It is also important to set minimum quotas on large organisations for recruitment and retention of people with mental health problems. This should also include mental health professions which, surprisingly, can sometimes be amongst the least sympathetic groups. However, these strategies need to be tailored to the needs of every individual. There are some examples of good practice that can be learnt from eg Mark Bertram and colleagues’ carpet-fitting business in South London and Rachel Perkins’ initiatives in the Pathfinder NHS trust.

Again we would wish to query the way the question is framed, however. There is a need to be clear about what is meant by ‘mental health problems’ and also to note that these problems may have been caused by the workplace in the first place. There is an urgent need to create work environments which are supportive for all employees, not just those who have experienced mental health problems. This would be a preventative mental health intervention. Supportive environments would be ones where co-workers were encouraged (both verbally and through the way workplaces were structured) to ‘look out for each other’. They would have regular high quality education and training about mental health (eg from service users’ perspectives about what helps them cope best at work). This could be built in by, for example, making such provision a criterion for ‘Investors in People’ recognition. Workplace support groups might also be available where both strong emotions and power inequalities at work (eg between managers and staff) was recognised and discussed. At a broader level there is much more of a need for encouragement of a co-operative team (eg ‘learning communities’) approach rather than the competitive individual approach to work. Such workplaces would ideally be less stressful for everyone including managers.

Q8 How much emphasis do local services place on helping people with mental health problems find and keep work?

There is a great deal of variability and provision of work-related support for people is very patchy. We are aware of some very good community mental health or employment service teams but, in general, we would say that there is relatively little emphasis. One issue is that where there is support this is often conditional on people being asked to ‘lower their sights’ and accept menial jobs with resulting effects on their self esteem.

Q9 How does the welfare benefits system, including the operation of housing benefit, affect people with mental health problems who want to resume work?

In general, in contrast to what might be the intentions of government policy, the effects are generally negative. People feel trapped by the current earning allowance regulations. Also the out-sourcing of housing benefit to private agencies has led to a very poor quality of service for some of the most vulnerable people in society. The experience of many is that they are continually passed from one person or agency to the next with lots of bureaucratic hurdles put in their way. This can be very stressful to deal with. Many people with mental health problems do not get the correct level and kind of benefits. Many do not realise for example that they can still receive Disabled Living Allowance if they are working or that they can receive the Disabled Person’s Tax Credit. We heard recently of an initiative by Croydon MIND which found that very large numbers of people with mental health problems could have their incomes substantially increased through the provision of tenacious and assertive support though these bureaucratic hurdles.

Q10 What could the government do differently to enable more people with mental health problems to work?

There are a number of things noted in our responses to other questions. However, other interventions might include: provision of incentives to employers to recruit and retain people with mental health problems; having a minimum quota for this (though this would be a basic minimum step and not answer on its own); encouraging public service organisations (eg the NHS, local authorities, the civil service etc) to take a lead; conducting a confidential survey of those organisations to see how many people would identify themselves as having a mental health problem (defined broadly and not just by psychiatric diagnosis). A final point would be that the government could take some important symbolic steps. For example we are not aware that any Minister or senior civil servant has ‘come out’ about their experience of mental health problems. To do so, or for the government to appoint such a person would do a great deal to counter myths and stereotypes. We are aware that this has occurred in other countries (eg Australia) and we note the positive effects on public perceptions that having a Minister who is blind (David Blunkett), a Minister who was openly gay (Chris Smith) and a Minister who was open about her struggle with cancer (Mo Mowlam) has had. Whilst he was still head of the government’s communications strategy Alastair Campbell decided to be open about his past alcohol problems and it would be good to see others in government talking more openly about their own mental health problems.

Q11 Which community-based services, civic and recreational activities are the most important to people with mental health problems? Please give details of any examples of good practice.

The same as everyone else! We would like to see more help available for people to use mainstream rather than segregated services. Where people feel the need for day services (eg day hospitals and day centres) we think there is a need to be more creative about the way these are organised. There are many examples of services run by service-users where attenders are allowed choice about how much they wish to interact with others. Unfortunately many neighbourhood community centres have high turnovers of staff and the fragmentation of many communities means these may not always be very welcoming places.

Q12 How easy is it for people with mental health problems to access these services? Why/Why not?

It can be very hard for people to access mainstream community-based services because of discriminatory practices which can make people feel stigmatised.

Q13 How could access to services, civic and recreational activities be improved for people with mental health problems? Please give details of any examples of good practice.

For example a ‘zero tolerance’ approach to ‘odd’ behaviour can mean that some people may be permanently barred because of one incident. Again, staff in these services need to receive training and support so that there is a tolerance of difference. There is also a need to increase the money available for community-based services and remove other financial barriers. For example, there needs to be increased funding of bus passes.

Q14 How important are families and friends in supporting people with mental health problems?

Families vary in how supportive they are and there can be significant differences as a result of, for example, gender: much research suggests that heterosexual marriage is positive for the mental health of men but negative for that of women. Many people with mental health problems find that they get much support from their friendships. We are aware that some call their networks of friends ‘families of choice’.

Q15 What kinds of attitudes exist in local communities towards adults with mental health problems? Please give details of any examples of good practice in building positive attitudes.

There is a wide variety of attitudes but generally there is a perception of widespread discrimination and stereotyped attitudes often fed by tabloid headlines. This can appear to be quite contradictory at times. For example, sometimes at an individual level people may be supportive whilst, at the same time, being prejudiced and discriminatory to others seen as having mental health problems. For example, we are aware of many occasions when local residents have campaigned to prevent local supported housing projects for people with mental health problems being located near them. In these situations it is important for those residents to meet service users on a personal basis as part of the application process so that residents are not able to fall into a ‘them and us’ trap. These contacts need to be carefully planned, however. In general it is important to promote contact between service users and particular groups. This could be conducted in schools for example. Education campaigns could remind people of their own or a family member or friend’s experience of mental health problems. Some researchers have suggested that an over-reliance on medical and psychiatric education campaigns (eg the ‘every family in the land’ or ‘defeat depression’ campaigns can be counter-productive because they make mental health problems look like diseases. In contrast, campaigns which put mental health problems in a social and psychological context are more understandable. For example, where service users are able to tell their stories and reveal the causes of their mental health problems (eg as a result of childhood abuse, or as a result of bullying or victimisation etc) they are viewed more sympathetically than if their problems are regarded as an illness that has come from nowhere. The Glasgow Media Group’s research suggests, for example, that Soap Opera characters’ experience of mental health problems are viewed more sympathetically because their problems occur as a result of particular life experiences. Although this may seem trivial these shows probably reach more people than anti-stigma campaigns. Finally there is an urgent need to tackle biased media reporting which leads to inaccurate stereotypes about people with mental health problems, particularly the risk of violence. Every single media study confirms this picture. Unfortunately some of the government’s own policies (eg the Mental Health Bill) are seen by some to confirm the accuracy of such stereotypes. This is an area where ‘joined up thinking’ across government is definitely needed.

Q16 How well co-ordinated are services which support people with mental health problems? Are lines of accountability clear?

No to both these questions. There is a need to involve service users more in planning and providing support. There is also a need for genuinely independent groups. Local communities also need to be involved more. Services are also too fragmented and competitive with many people falling between the gaps – perhaps NHS and social services could be amalgamated. The independent sector also needs to be more involved but this is hampered by short-term funding of many worthwhile projects.

Q17 What gaps would you identify in current service provision?

There is a need to help set up networks for people with mental health problems especially at times of crisis. Befriending services need to be available at all times including outside of office hours. There is a need for dedicated benefits, housing and employment advice and support. There is a need for truly independent advocacy. There is a need for more flexible availability of money (eg to pay for a service user’s cinema trip). The Care Programme Approach is often not meaningful with service users not adequately involved – training of NHS staff often focuses on the forms and not on their content or how to involve service users. Advance directives about how service users want to be helped when they are having a mental health crisis need to be introduced, given legal standing. NHS staff need training in how to support their development.

Q18 Are there examples of good practice in service provision by the voluntary/community sector which could be disseminated more widely?

There are many good examples and we will only list a few here. Outreach teams to the Afro-Caribbean community (eg Antenna in Tottenham and Isis in Deptford). Services run by service users eg Wokingham MIND’s crisis house, Birmingham’s Anamcara and Greenwich MIND’s drop-in and crisis service. There are good examples of practice in Bradford.

Q19 Are there examples of good practice in other countries which we could learn from?

Yes there are many examples of good practice. For example: the reorganisation of philosophy and practice in Trieste; therapeutic communities in Kerala, India; Needs Adapted Treatment in Finland. We note Richard Warner’s research that suggests that so-called Third World countries have much better recovery rates for ‘schizophrenia’ and the implications of this needs to be thought through for mental health care in industrialised nations – eg the involvement of local communities (see Lucy Johnstone’s review in the second edition of Users and Abusers of Psychiatry, London: Routledge).

Q20 What would be the best way to measure progress in reducing social exclusion for adults with mental health problems?

There are a number of ways. Firstly, the weekly income of people with mental health problems, compared with national statistics. Secondly, the number of social contacts those people had per week (and the nature of those contacts (eg who with? What for?). Thirdly how meaningful their daily activities were to them. Fourthly their own perceptions of progress. Fifthly a change in societal attitudes and media representations of people with mental health problems (discrimination against people with mental health problems needs to become as socially unacceptable as racism and sexism) – for example for there to be more public recognition of the possibility of recovery from mental health problems. The recent MIND survey of service users’ experiences of media coverage would provide a baseline to judge progress against.

Q21 Is there anything else you would like to tell us?

Issues which we have not mentioned fully elsewhere in our responses but are also important to address include:

a) The need to clarify what is meant by ‘mental health problems’ and to move away from solely psychiatric classifications. Given the heterogeneity in psychiatric diagnostic categories (ie that two people with the same diagnosis can have very different problems) there is a need for epidemiological research to look in more detail at the kinds of problems people experience.

b) The importance of placing mental health problems in a social and ecomonic context rather than seeing them as problems lying within the individual.

c) There is an urgent need to provide stable long-term funding to independent groups of service users and survivors (eg the Hearing Voices Network, Survivors Speak Out, Mad Pride and so on). There is also a need for properly funded and independent advocacy.

d) There is a need for mental health services to be focused less on simply ‘maintaining’ people (eg on ‘maintenance doses of neuroleptic drugs) but to design services that support people to recover from their difficulties.

e) Mental health services need to offer more real choices about the kind of treatments available to service users (ie not just drug treatment or nothing).