It has now been 5 years since the publication of Caught between Stigma and Inequality and the BME Health Forum is planning to do some new work around mental health. Our first step will be to revisit Caught between Stigma and Inequality and examine whether any progress has been made since we made our recommendations. We will be publishing our findings here.
To view our Mental Health report entitled, 'Caught Between Stigma and Inequality' in PDF form, please click here.
BME Communities and Mental Well-Being
The BME Communities and Mental Well-Being in KCW Task Group was launched in October 2003 to obtain feedback from black and minority ethnic (BME) communities in Kensington & Chelsea and Westminster (KCW) on issues related to mental health and well-being, including access to, and use of, local mental health care services. The project embraced migrant communities in KCW including those from Africa, the Caribbean and Morocco as well as refugee and asylum seeker groups from the Middle East, Africa and South Asia.
The project was co-ordinated by the BME Health Forum and the Migrant and Refugee Communities' Forum (MRCF). Representatives from the communities, with voluntary and statutory agencies, were also involved in the project from the outset.
The aim of the project was to assess community experiences and perceptions of local mental health care services, to identify unmet needs and to recommend improvements that will better serve the needs of local BME communities. With the new obligations on service providers in the Race Relations (Amendment) Act 2000 and Section 11 of the Health and Social Care Act 2001, this project sought to facilitate better consultation with, and engagement of, KCW BME communities in the planning, commissioning and delivery of local mental health care services.
For members of many minority ethnic communities, the stigma attached to any suggestion of mental illness influences their decision when deciding whether to acknowledge the problem and seek treatment, or to conceal it.
The fear of being labelled "mad" or "crazy" and consequently shunned by family and friends leads some people to try to appear "normal" and untroubled. In these communities, psychological stress is seen as madness, and madness is seen as incurable. The implications of this are that there is little point in seeking treatment and mental distress must be endured as part of life in a minority situation within the UK.
Social exclusion can be both a source and a consequence of mental ill health. Members of BME communities often experience social exclusion, particularly poverty, unemployment and a lack of support from statutory services for which their own community groups may not be able to compensate. In addition, poor housing and isolation often lead to depression and can be compounded by an inability to communicate because of language barriers. This can adversely affect many aspects of the lives of people from BME communities – from accessing statutory services to arranging schooling for their children - and they were particularly ill-informed about the availability of mental health care services. The cumulative effect of this range of problems can cause severe mental distress.
When asked what would improve their mental well-being, people cited community-based activities of all kinds, from sports to social events, along with advice and improved access to health services. GPs are usually the first port of call for those with mental as well as physical health problems. However, many participants in the study have difficulty communicating with their doctors, not just because of linguistic and cultural barriers, but also because of the time constraints set on individual patient consultations.
Consequently, deteriorating mental health often goes undetected until it has become severe and as a result, BME patients are over-represented in acute care but under-represented at the counselling or psychiatric therapy stage. In other words, their treatment tends to be via by medication rather than by "talking therapy". In addition, they may often be misdiagnosed at this stage and are not informed of the diagnosis that is applied to them.
Experiences described by users who had been admitted to mental health wards are often very negative and include isolation, boredom, staff insensitivity and unpleasant side effects from prescribed medication. If there were any therapeutic activities, they are generally in English since most of the occupational therapists are English speaking and interpreters are rarely available.
There is a widespread feeling that the treatments offered reflect the needs of the system, not those of the individual patient; and that doctors do not listen properly to their patients or take sufficient time on explanations. There is a shortage of interpreters and if the provision of interpreting were improved, this would transform services for minority groups. At the moment, they feel that doctors' perceptions of their state of mind and needs are seriously limited.
The most significant feeling that came from BME participants in this consultation is one of pervasive isolation, of "being on the outside". This in turn fuelled deep-seated depression because their many and diverse needs are not being adequately met. Better communication is needed at all levels through the assistance of professionally trained interpreters and the allocation of sufficient time to enable patients or clients to express their needs, understand their diagnosis and have full information about the help – including medication – that is available to them. Culturally appropriate day centres could play a large part in alleviating mental distress, particularly if well staffed by trained workers; but so also can access to sporting activities, social events and faith-based meeting places. An active partnership needs to develop between statutory and voluntary services and the BME communities in order to break down social exclusion.
The BME communities themselves should participate in training professional staff about cultural diversity and minority needs, and an understanding and explanation of minority group approaches to mental health should be included in this training. This will aid professionals in their understanding of mental illness and stigma within BMA communities. Greater access to bi- and multi-lingual advocacy in mental health care settings, including inpatient care, will also do much to reduce feelings of isolation and help doctors and nurses to offer effective care to individual patients; and much greater attention must be given to aftercare services to aid continuing rehabilitation and better integration into the community at large.
Summary of Recommendations
1. Stigma and all the negative perceptions that circumscribe mental health issues within
BME communities must constantly be challenged.
2. Mental health link workers are needed to work closely with those community and faith groups that already play a significant role in fostering mental well-being amongst BME communities. Link workers have a crucial role in promoting mental health and challenging stigma. In KCW there is a need for at least one part-time link worker to work with community and faith centres and liaise with local GP practices.
3. Information about mental health and access to services must be available in different formats, including audio and video, in various community languages. This information should be disseminated through mainstream and supplementary schools, faith groups, social venues, community radios and other local media. This way, information about mental health services can be mainstreamed and de-mystified; and community groups can then support and signpost those in need.
4. Interpreters should receive training in mental health issues. This will help to detect symptoms before people are forced into secondary care; and only professionally trained interpreters should be used in both primary and secondary care settings.
5. Bilingual befriending schemes can work within local communities and faith groups.
Such schemes can also assist in secondary care settings to help combat users' sense of isolation and loneliness in hospital wards.
6. There should be more support for community based activities and projects.
Community and faith centres play a very important role in the mental well-being of their members. In addition to their traditional role, many centres provide both direct and indirect support to people with mental health difficulties and would therefore benefit from additional financial and professional support with this work.
7. Recognising, understanding and appreciating the role of faith are vital for the provision of more culturally sensitive services. This can be done by creating better links with faith groups.
8. More referrals should be made to therapeutic services, such as psychology and counselling; and the waiting times for these therapies must be reduced.
9. Assessment should focus on the individuals and their interests. This should form the centre of the assessment process, not the process itself.
10. Staff training should include cultural diversity so that BME user voices are heard, understood and supported by the mental health care system. It is equally important that
BME users and carers are involved in the planning and delivery of this training.
11. Communication between staff and service users must be improved. There should be regular meetings for service-users, where they are encouraged and given enough time to express their views about their treatment and medication in a comfortable atmosphere.
12. In-patient ward activities should be more diverse, to appeal to all users, including BME users. BME users should be continually involved and consulted to get these activities right.
13. Full information about medication, its effects and side effects must be provided in a way that can be understood by all users.
14. More day centres, like the Oremi Centre, should be provided, with more workers, including bilingual support workers, to meet the cultural needs of users.
15. CPA plans must take proper account of culture and diversity, especially when users are referred to day centres that offer therapeutic activities. Key workers must be allowed the time and opportunity to hear and get to know users, so that they can offer flexible support to meet individual needs.
16. Action to improve social inclusion, for example, through providing better access to social and leisure activities, housing services and employment opportunities in deprived areas, is essential to the mental health and well-being of the BME communities who live in those areas.