Feature

All the lonely people

Mind has published the results of the largest ever UK inquiry into social exclusion and mental health. It found that people with mental ill-health are excluded from virtually every aspect of society – but it also found potentially successful ways of promoting inclusion. Sara Dunn reports

People experiencing mental ill health are among the most socially excluded in Britain: only 13 per cent of people with serious mental health problems are working; mortality rates for those diagnosed with schizophrenia are two and a half times more than the national average and two-thirds of media reports misleadingly portray all people with mental health problems as violent.^{1 2 3}

In November 1999, Mind published the results of the largest ever inquiry into social exclusion and mental health. Creating Accepting Communities brought together a panel of experts to consider evidence on social exclusion and mental health issues from hundreds of individuals, groups and organisations, ranging from high street retailers to individual service users, NHS trusts to small voluntary groups.⁴

The aim of the inquiry was to assess the extent and nature of the social exclusion experienced by people with mental health problems – by listening to service users and professionals. The panel also wanted to discover from general employers and providers of goods and services what help they need to counter the exclusion of people with mental health problems from mainstream society.

The experience of exclusion

The panel received strong and consistent evidence of the discrimination people experience as a direct result of their mental health problems. This discrimination, which occurs in every area of life, combines to make mental health service users vulnerable to extreme exclusion.

• Jobs In the area of employment, inquiry witness Simon Morris echoed many others when he commented: ‘We retrain people with mental health problems to get them back into employment. We have good contacts in business and industry, but we haven’t been able to place people at all easily. There is still so much fear.’

The evidence to the panel showed that there are many openly discriminatory practices in workplaces over mental ill-health. Equally, the employers who gave evidence said they felt under-prepared and under-informed in dealing with mental health issues. It became clear that most mental health services, in both clinical and support settings, do not see promoting employment for service users as part of their role.

• Education In education and training, the story was very similar. Inquiry witness Micheline Mason pointed out: ‘The entire education system is underpinned by an unaware but deeply entrenched policy of segregation based on totally false concepts of “ability” and “disability”.’ There is little knowledge or understanding of mental health issues in many schools, colleges or universities. Practical support mechanisms for people with mental health problems – for example, benefits advice, transport and on-campus support – are almost non-existent within further and higher education. Added to this, the structure of many courses – limited time-frames for completion, for example – also discriminate against people with mental health problems.
• Discrimination Many of the users of services who gave evidence to the inquiry spoke of the daily discrimination they experienced as a result of their diagnosis. ‘It is easier to live in society with a prison record than a psychiatric record,’ said Hywel Davies. Like him, other users said they felt that a psychiatric diagnosis makes them non-citizens, with no rights, no credibility and no redress.

Added to this ostracism, lack of work and lack of access to everyday goods and services, racist discrimination has a material impact on mental health, and gender stereotyping can also have very detrimental impact on both men and women with mental health problems.

Perpetuating discrimination

Inquiry witnesses, both users and professionals, were deeply concerned at the tremendous power the media possesses in creating and perpetuating discriminatory attitudes towards people with mental illnesses.

Many witnesses also felt that mental health services themselves bore some responsibility for creating and perpetuating exclusion. Simon Foster, head of legal services at Mind and an inquiry witness, commented: ‘The fundamental point is that discrimination arises because of the diagnosis, not as a result of the condition itself.’ It is incumbent on mental health professionals to understand mental health problems in relation to the disabling effects of discrimination. A lack of understanding about the effects of discrimination in daily life has a particularly severe impact on service users from minority groups, or people with physical or sensory impairments.

For some witnesses it was clear that instead of leading to a therapeutic or supportive process, a psychiatric diagnosis was the start of their social exclusion. This process is triggered in part by the nature of psychiatric services, which can be experienced as ghettoised and stigmatising.

Overall the evidence was powerful testament to the ‘holistic’ nature of exclusion. Both cause and effect are multifaceted and interconnected (see figure 1). All the connections are two-way, so that a simple ‘cause and effect’ model cannot be applied. Any definition of social exclusion that focuses solely on the labour market is misplaced and partial and, equally, any attempt to address mental health problems that does not take into account the material circumstances of service users will be critically undermined.

Promoting inclusion

This government has declared that reducing social exclusion in the UK is one of its central aims, and has pointed to the necessity of multi-agency working to achieve it. At the same time, mental health service users’ experiences of sometimes brutal social exclusion is forcing mental health service providers to look beyond traditional service boundaries. These trends together could generate a momentum for work towards social inclusion.

• Employers In a recent CBI survey of over 800 companies, 98 per cent of respondents said they thought the mental health of employees should be a company concern. Norwich Union, which supplied written evidence to the Mind inquiry, stated: ‘We promote rehabilitation and support for staff during and after illness, including mental health problems. We understand and subscribe to the suggestions for best practice with regard to mental health, and are open to guidance on how best to translate these into action.’

Many employers are starting to recognise that creating mentally healthy workplaces, including supporting workers who are experiencing, or have previously experienced, mental ill-health, constitutes good employment practice. All employees have mental health needs, and measures to support people with particular problems will benefit all. Witnesses highlighted some pioneering, models of good employment practice within the NHS itself — for example, South London and St George’s Mental Health NHS Trust — that can be disseminated and built upon.

Likewise some educational institutions have established starter courses for people with mental health problems, geared to students’ needs. These are vital stepping-stones on the way to full inclusion.

But several witnesses pointed out the importance of not mistaking mid-points for end-points in promoting inclusion. ‘If you set up a class in an ordinary college for mental health service users only, it’s a good start. But it’s only a stepping-stone. Mainstream registration alongside ordinary citizens is more like inclusion in my book,’ said Peter Bates, an inquiry witness.

• Role of the media Although the media was highly criticised, many witnesses also recognised its huge potential as a force for change. Promoting positive role models – famous people and ‘ordinary’ people talking about living with mental ill-health – has a tremendous power to demystify and destigmatise.

Media monitoring also has role to play. Witnesses felt that media organisations are sensitive to their audiences’ views, and co-ordinated action to get service users’ views onto media producers’ agendas has tangible results.

• Community initiatives There are examples of health and social services going into the community, talking to people – pub landlords, gym managers, shopkeepers – and building bridges so that mental health service users can be included back into their local communities.

Inquiry witness Peter Bates said: ‘What we have found is that we are actually surrounded by allies in the move for inclusion. We found experts in inclusion just around the corner, disguised as teachers, as parents of children with disabilities, as shopkeepers. We found that if we asked people to open up, to include others, then often they would say “Yes”.’

Thinking about inclusion in its widest sense can lead to the creation of imaginative schemes such as LETS (local exchange trading schemes), which have transformed the lives of some mental health service users.

For mental health services, it was felt that ‘a programme of community dialogue and education must be at the centre of any mental health strategy’ (Community Housing and Therapy, written evidence). Community development activities and partnerships that stretch beyond health and social services’ boundaries are beginning to gain momentum.

Health Action Zones, Health Living Centres, Sure Start and other government initiatives are all contributing to a more inclusive view of mental health and illness. Employment is a key factor in creating and maintaining mental health and mental health trusts are seeking collaboration with employment agencies and other local bodies to promote jobs for service users.

The English National Service Framework for Mental Health and Local Health Improvement plans offer valuable opportunities to ensure better collaborative work between health and local authorities. The inquiry panel welcomed the emphasis in the English public health white paper, Saving Lives: Our Healthier Nation, and Welsh white paper, Better Health: Better Wales, on ‘integrated action’ to tackle mental ill-health, and the intention to ensure that ‘mental health is regarded as a key outcome of each strand of the government’s agenda’. But there needs to be a greater emphasis on the roles and responsibilities of local authorities, and on active ways of tackling exclusion, if there is to be effective integrated action.

• Legal reform Unfortunately some proposed law reforms are not helping the drive towards a fairer, more inclusive society. Home Office/Department of Health proposals for the ‘treatment’ of people diagnosed with ‘dangerous severe personality disorder’, as well as the introduction of compulsory treatment orders under the Mental Health Act, have given great cause for concern.

Real support for the concept of an inclusive society must mean resisting the temptation to scapegoat people with mental health problems, who are already experiencing the worst exclusion of any group in our society. Partial inclusion is no inclusion at all.

Report available from: Mind Publications, 15-19 Broadway, London E15 4BQ, tel 020 8221 9666, fax 020 8534 6399, e-mail publications@mind.org.uk (£9.99 + £1 p&p).Executive summary (available in English or Welsh) £1+31p p&p. Bulk orders on request. Eight-page large-print executive summary (English) £1.25+40p p&p. Audiocassette executive summaries (English) £2+50p p&p.