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Delivering race equality in mental health care: report on the findings and outcomes of the community engagement programme

2005-2008
Jane Fountain and Joanna Hicks

SUMMARY REPORT 2010

International School for Communities, Rights and Inclusion (ISCRI) University of Central Lancashire

contents

Executive summary Introduction SECTION 1: Delivering Race Equality and the NIMHE Community Engagement project 1.1 The ISCRI Community Engagement Model 1.2 The NIMHE Community Engagement Project SECTION 2: Key themes and findings 2.1 2.2 2.3 2.4 2.5 2.6 Fear of mental health services Effective therapies and interventions Culturally appropriate treatment The journey towards recovery Service user and carer satisfaction with mental health services A more active role for Black and minority ethnic communities and service users

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SECTION 3: Project outcomes 3.1 Outcomes for the community researchers 3.2 Outcomes for community organisations 3.3 Outcomes for Black and minority ethnic communities SECTION 4: Recommendations from the community organisations 4.1 4.2 4.3 4.4 4.5 Fear of mental health services Effective therapies and interventions Culturally appropriate treatment and interventions The journey towards recovery Active involvement of BME communities, service users and carers

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SECTION 5: Delivering Race Equality – Some reflections SECTION 6: References

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eXecUtiVe section sUMMARY

This is a summary of the full project report, which can be accessed on www.uclan.ac.uk/iscri/index.php
Launched in 2005, Delivering Race Equality in Mental Health Care (DRE) (Department of Health, 2005) was a five year action plan for achieving equality and tackling race discrimination in mental health services in England. DRE required NHS services to deliver on three key aims by 2010: • equality of access • equality of experience • equality of outcomes. The action plan was founded on three building blocks: • more appropriate and responsive services • community engagement • better information. Initially, DRE was delivered by the National Institute for Mental Health in England (NIMHE) and then by the National Mental Health Development Unit (NMHDU), which replaced NIMHE in April 2009. The NIMHE Community Engagement Project was established by NIMHE within the DRE community engagement building block. The project was commissioned from the International School for Communities, Rights and Inclusion (ISCRI) at the University of Central Lancashire (UCLan) and used the ISCRI Community Engagement Model (Fountain, Patel and Buffin, 2007). This model brings Black and minority ethnic communities and public service agencies together to research and address issues of mutual concern. The NIMHE Community Engagement Project was conducted in three phases over three years, 2005-2008. A total of 80 projects were selected across all eight Strategic Health Authorities, and 79 community engagement studies completed: 11 in the pilot phase 2005-2006; 29 in the 2006-2007 phase, and 39 in 2007-2008.

Studies focused on five of the DRE characteristics: • ess fear of mental health services among l BME communities and service users • more balanced range of effective therapies, a such as peer support services and psychotherapeutic and counselling treatments, as well as pharmacological interventions that are culturally appropriate and effective • workforce and organisation capable of a delivering appropriate and responsive mental health services to BME communities • ore BME service users reaching m self-reported states of recovery, and • ncreased satisfaction with services. i The total sample size was 6,018 people, comprising 5,751 community members and 267 mental health service providers. Of the community members, 935 (16.2%) currently used or had used mental health services and 344 (6%) described themselves as carers for a person with a mental health condition. Of those identified by their ethnic group, 40% were Asian or Asian British; 24% were Black or Black British; 17% were White or Other White; 7% were Chinese; 4% were categorised as Mixed, and 8% were categorised as Other – including Cypriot, Iranian, Kurdish, Turkish, Turkish Cypriot, Vietnamese and Yemeni.

The authors thank Catherine Jackson for her assistance with the preparation of this summary report.

For further information on any aspect of this report, contact

jfountain1@uclan.ac.uk or iscrioffice@uclan.ac.uk

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HeAding

eXecUtiVe sUMMARY

This review looks back at DRE’s work as its five year plan comes to an end. DRE has carried out an extensive programme of work and this review describes some of our key challenges, successes and learning. It also outlines how DRE’s work will be taken forward under New Horizons.

Findings
Fear of mental health services
Not all participants who were asked expressed a fear of mental health services. However, fear as a barrier to accessing services was a recurring theme in the majority of the study reports. Those with little or no personal experience of mental illness reported that their biggest fear of seeking help was the stigma, shame and social repercussions. Those who had direct experience of services, particularly as inpatients, reported that their biggest fear was re-engaging with these services. They were particularly fearful of medication and hospital admission, of being sectioned under the Mental Health Act 1983, of being mistreated by services, that their confidentiality would not be respected, and of their symptoms and illnesses becoming worse through contact with other service users.

Talking therapies were most often cited as the preferred alternative to, or accompanying treatment with, medication although some concerns were also expressed about confidentiality and the need for cultural competence. A minority of the study participants with mental health problems, across all the ethnic groups, had used complementary therapies and wanted them to be available in mainstream mental health services. Social interaction and taking part in activities were thought to maximise the benefits of prescribed treatment. Services from voluntary and community organisations were particularly valued for the opportunities they offered for socialising, befriending and participation in activities such as outings, lunch clubs, exercise and discussion groups.

Effective therapies and interventions
Study participants and the community organisations strongly criticised what they perceived to be an unbalanced reliance on medication, with its unwanted side effects. The majority of the mental health service users who had been treated only with medication felt that other and/or additional therapies would have made their treatment more effective. However, it was reported that a choice and/or a combination of therapies were not routinely offered to service users.

Culturally appropriate treatment and interventions
Reports from across all the studies and all the participating Black and minority ethnic communities point to a strong need for greatly increased cultural competency in mental health services. Study participants highlighted the need for practical improvements in language (interpreting, translating, literacy support), meeting faith-related and religious needs, culturally appropriate food, gender-specific services and staff, increasing the ethnic diversity of staff, and action to tackle racism.

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eXecUtiVe section sUMMARY

HeAding

This review looks back at DRE’s work as its five year plan comes to an end. DRE has carried out an extensive programme of work and this review describes some of our key challenges, successes and learning. It also outlines how DRE’s work will be taken forward under New Horizons.

The journey towards recovery
Factors that facilitate recovery were identified as support from family and friends, ‘keeping busy’, a positive attitude, faith and religion, and medication. Lack of support from family and friends, the stigma of mental illness, a return to an unchanged environment after treatment, a poor experience of treatment, and disbelief that recovery is possible were seen as obstacles to recovery.

Outcomes
Positive outcomes were reported for the individuals and community organisations involved in the project, and for local communities. Of 72 CDWs who were aware of the project, 40% reported seeing improvements in local mental health services as a result of the community engagement studies. The most frequently reported improvements included better awareness and understanding of mental ill health, improved community contacts and community engagement, better services and information, and improved communication and contact with commissioners. The most frequently mentioned obstacles to achieving improvements were lack of funding and lack of support from healthcare professionals and senior NHS management.

Service user and carer satisfaction with mental health services
Levels of satisfaction with mental health services were highly individual and subjective, but also inextricably linked to service users’ fears of mental health services, perceptions of the effectiveness of the treatment received, experiences and perceptions of services’ cultural competence, and whether or not they felt their treatment resulted in recovery. There were many accounts and much statistical data showing that services had made a positive impact. Equally, there were some powerful stories of problematic experiences. As one of the community organisations commented: ‘Where someone’s illness was explained and understood... and a choice of treatment offered, people, in general, had a much better perception of the mental health services provided.’

A more active role for Black and minority ethnic communities and service users
The NIMHE Community Engagement Project of itself enabled a more active role for Black and minority ethnic communities and Black and minority ethnic service users, in that so many community members and organisations were actively involved in the studies and in identifying barriers and opportunities for improving service accessibility and provision.

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Recommendations
The majority of the studies recommended vastly increased involvement of Black and minority ethnic community members and service users in the planning, commissioning and delivery of mental health services. This would reduce these communities’ fear of mental health services; provide them with a more balanced range of culturally appropriate, effective therapies; increase mental health services’ cultural competence; increase self-reported recovery rates among Black and minority ethnic service users and increase their satisfaction with services. Taken together, the study reports proposed a very wide range of detailed recommendations to meet the DRE aims and vision. These can be summarised as: • ore training and proactive recruitment m of Black and minority ethnic people, so that they are represented at all staffing levels within mental health services • ore community-based services, staffed m and run by members of the target community • ore service user input into m planning services • ore service user input into m advocacy services • ncreased input by Black and minority i ethnic community members (including mental health service users) into cultural competency training for all mental health service staff, including all those who treat service users and come into contact with them (such as receptionists) and for those who may need to be more aware of providing culturally appropriate services, such as interpreters and chefs • support to Black and minority ethnic community organisations and members (including mental health service users) to provide information to their communities about mental health and mental health services, in order to address stigma and encourage help-seeking

encouragement to service users and other community members to set up self-help and peer support groups both to support each other and support general mental wellbeing ore funding for community m organisations to provide opportunities for social interaction and a range of leisure, educational and occupational activities partnerships between mental health service providers and religious and community organisations to increase all parties’ knowledge and awareness of mental health service needs in terms of faith and religion ecruitment of Black and minority ethnic r chefs to work in mental health services providing food recruitment from the local community of bilingual workers, interpreters, community workers, outreach workers, ambassadors, advocates and champions to act as links between mental health services and the community pportunities for service users to o volunteer at the mental health services they attend, to enhance confidence and provide a pathway towards work, and ervices to encourage peer support to s service users via mentoring and befriending.

Importantly, the study reports also highlight the need for local action involving local communities. As the studies show, beneath the broad consensus on the key issues of cultural competence and mistrust of mental health services, the needs and priorities of the various Black and minority ethnic communities in England vary widely. Blanket solutions are not appropriate: what works for any one Black and minority ethnic community may be inappropriate and unacceptable for another.

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dRe – A FiVe YeAR Action PLAn

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Launched in 2005, Delivering Race Equality in Mental Health Care (DRE) (Department of Health, 2005) was a five year action plan for achieving equality and tackling race discrimination in mental health services in England. The plan emerged partly in response to growing disquiet at the disproportionate number of Black African and Black Caribbean men detained in psychiatric hospitals in England under the Mental Health Act 1983. DRE was produced following the inquiry into the death, while under restraint in an NHS psychiatric unit, of a African Caribbean man, David Bennett, in 1998 (Norfolk, Suffolk and Cambridgeshire Strategic Health Authority, 2003). However the action plan extended its remit more widely to encompass all ethnic groups in England, including migrants from Central and Eastern European countries, Irish people and Irish Travellers. DRE required NHS services to deliver on three key aims by 2010: • quality of access e • quality of experience e • quality of outcomes. e The five year vision for DRE was that, by 2010, mental health services should be characterised by: • ess fear of mental health services among l Black and minority ethnic (BME) communities and service users • ncreased satisfaction with services i • reduction in the rate of admission of a people from BME communities to psychiatric inpatient units • reduction in the disproportionate rates of a compulsory detention of BME service users in inpatient units • ewer violent incidents that are secondary f to inadequate treatment of mental illness • reduction in the use of seclusion in a BME groups • he prevention of deaths in mental health t services following physical intervention • ore BME service users reaching self-reported m states of recovery
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a reduction in the ethnic disparities found in prison populations more balanced range of effective therapies, a such as peer support services and psychotherapeutic and counselling treatments, as well as pharmacological interventions that are culturally appropriate and effective more active role for BME communities a and BME service users in the training of professionals, in the development of mental health policy, and in the planning and provision of services, and workforce and organisation capable of a delivering appropriate and responsive mental health services to BME communities.

The action plan was founded on three building blocks: • ore appropriate and responsive services m – through action to develop organisations and the workforce, to improve clinical services and to improve services for specific groups, such as older people, children and adolescents, and asylum seekers and refugees • ommunity engagement – through c healthier communities and by action to engage communities in planning services, supported by 500 new community development workers (CDWs) • etter information – through improved b monitoring of ethnicity, better dissemination of information and good practice, and improved knowledge about effective services, including an annual census of mental health inpatients. To achieve these aims, 17 focused implementation sites (FISs) were established across England to pioneer best practice in eliminating discrimination in mental health care. Regional race equality leads (RELs) were also appointed to provide local leadership for the Department of Health and NIMHE’s Black and minority ethnic programmes, including the DRE action plan. One of the methods of fulfilling the community engagement agenda was to use the ISCRI Community Engagement Model.

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dRe And tHe niMHe coMMUnitY engAgeMent PRoject

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The Community Engagement Project was established by NIMHE as one of the initiatives within the DRE community engagement building block. It aimed to: • elp to build capacity in the non-statutory h sector • ncourage the engagement of Black and e minority ethnic communities in the commissioning process • nsure a better understanding by the e statutory sector of the innovative approaches used in the non-statutory sector • nvolve Black and minority ethnic i communities in identifying needs and in the design and delivery of more appropriate, effective and responsive services • nsure greater community participation in, e and ownership of, mental health services • llow local populations to influence the a planning and delivery of services • ontribute to workforce development and c specifically to the recruitment of 500 community development workers. To achieve these aims, it adopted a model of community engagement originally developed by the Centre for Ethnicity and Health at the University of Central Lancashire (UCLan).

1.1 The ISCRI Community Engagement Model
The ISCRI Community Engagement Model (Fountain, Patel & Buffin, 2007) (ISCRI, the International School for Communities, Rights and Inclusion, is the successor to the CEH) takes as its starting point the premise that the community itself is best able to access its own members in order to raise awareness and assess need. It brings communities (individuals and organisations) and agencies together to research and address issues of mutual concern and ensure that the findings from the research benefit the communities that are being studied. Individuals from the target community are recruited and provided with training and support from an external facilitator (UCLan in this case) to conduct the work. Close involvement of the public agencies responsible for commissioning, planning and delivering public services agencies is seen as essential to the success of the projects. This is ensured by their representation on the project steering group.

1.2 The NIMHE Community Engagement Project
The NIMHE Community Engagement Project was conducted in three phases over three years, 2005-2008. Applications were sought from local community organisations to host the community engagement studies. A total of 198 applications were received over the three years, 80 were selected and 79 community engagement studies were completed: 11 in the pilot phase 2005-2006; 29 in the 2006-2007 phase, and 39 in 2007-2008. Altogether, 75 community organisations were involved (four each conducted two studies and one community organisation was unable to complete the work).

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Table 1: Breakdown of community engagement studies by Strategic Health Authority SHA area East of England East Midlands London North East North West South Central South East Coast South West West Midlands Yorkshire and the Humber Studies 5 8 17 2 12 6 3 8 11 7

dRe And HeAding tHe niMHe coMMUnitY engAgeMent PRoject continued
This review looks back at DRE’s work as its five year plan comes to an end. DRE has carried out an extensive programme of work and this review describes some of our key challenges, successes and learning. It also outlines how DRE’s work will be taken forward under New Horizons.

In several cases, partnerships between community organisations were formed especially for the project. Local branches of national organisations also conducted some studies. In some instances, close alliances were formed with DRE CDWs and, in a few cases, CDWs played a lead role in managing the community engagement team and/or gathering data for the study. The vast majority of the studies were conducted within designated DRE FISs and all ten strategic health authority (SHA) areas were represented (see table 1). 1.2.1 The themes Community organisations were asked to actively engage members of Black and minority ethnic communities (including mental health service users), both as researchers and study participants, in researching one or more of the 12 service characteristics set out in the DRE vision. The community engagement studies focused on five of the DRE characteristics: • ess fear of mental health services among BME l communities and service users • more balanced range of effective therapies, a such as peer support services and psychotherapeutic and counselling treatments, as well as pharmacological interventions that are culturally appropriate and effective • workforce and organisation capable of a delivering appropriate and responsive mental health services to BME communities • ore BME service users reaching self-reported m states of recovery, and • ncreased satisfaction with services. i A sixth characteristic, ‘a more active role for Black and minority ethnic communities and Black and minority ethnic service users in the training of professionals, in the development of mental health policy, and in the planning and provision of services’, was also explored by the authors of this report, based on the study outcomes.

1.2.2 Data collection A total of 547 community researchers were recruited by the 75 community organisations to collect data for the project. They comprised 331 (61%) females and 216 (39%) males. Of these, 48 (9%) were previous or current mental health service users and nine were carers of service users. A variety of research methods were used to collect data from community members. Many studies used more than one method. They included face-to-face interviews (77 studies), self-completion questionnaires (five studies), focus groups (32 studies), case studies (seven studies), events and seminars (nine studies) and a video diary (one study).Two studies used clinical evaluation tools (the PHQ9 screening tool for assessment of depression and Clinical Outcomes in Routine Evaluation (CORE)). A variety of methods was used to collect data from service providers, including self-completion questionnaires, and focus and discussion groups. Core demographic information was obtained using questions devised by the Centre for Ethnicity and Health’s community engagement team. In addition, a year after the project ended, a short questionnaire was devised for DRE CDWs to gauge their levels of involvement in the NIMHE Community Engagement Project, whether they had seen any improvements to mental health services as a result, and if there were any obstacles that prevented these improvements. The questionnaire was administered online using SurveyMonkey, a tool that also analyses the results.

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1.2.3 Participants The total sample size was 6,018 people, comprising 5,751 community members and 267 mental health service providers. 1.2.4 Community sample Of the 5,751 community members, 935 (16.2%) reported that they currently used, or had used, mental health services and 344 (6%) described themselves as carers for a person with a mental health condition. However not all the community members were asked if they were service users or carers, so these figures may be an under-representation. The sample’s ages ranged from 16 to over 80. The sample comprised a wide range of ethnicities. Some studies focused on just one ethnic group; others included a variety. A total of 4,888 people (85% of the community member sample) stated their ethnicity (see figure 1): • sian or Asian British (1,955/40%) – A predominantly South Asian (Pakistani (904), Indian (580) and Bangladeshi (249)). The remainder described themselves as Other Asian or Asian British • lack or Black British (1,173/24%) – mainly B Black Africans (726) and Black Caribbeans (381). The remainder categorised themselves as Other Black or Black British • hite and Other White (831/17%) – W including Romany Gypsies (204), Irish Travellers (78), Gypsies and Travellers (141), Irish (179), Ashkenazi Jewish (50), and Polish and other Eastern European people • hinese (342/7%) C • ixed (196/4%) – mainly White and Black M African or White and Black Caribbean • ther (391/8%) – including Cypriot, Iranian, O Kurdish, Turkish, Turkish Cypriot, Vietnamese and Yemeni. Approximately a third of the community member sample had been born in the UK. Of those who said they had been born elsewhere, almost half had lived in the UK for 11 years or longer; 15% had lived in the UK for between six and ten years; just over 25% had lived in the UK for between one and five years, and the remainder (less than 10%) had lived in the UK for less than one year. More than two thirds of the 4,817 people (84% of the community member sample) who reported their citizenship were British citizens. The community member sample reported using a total of 131 languages and dialects as either their first language or those that they spoke and/or wrote fluently. The majority said English was the language they most often spoke or wrote fluently, but some studies noted that study participants may have overstated their proficiency. Of the 5,156 (90%) of community members who reported their faith or religion, the largest proportion were Muslim (46%), followed by Christian (29%). Smaller proportions reported that they were Hindu (5%), Sikh (5%), Buddhist (3%) and Jewish (2%), and 6% said they had no faith or religion. The remaining 4% included people who reported their faith or religion as Ancestor Worship, Jain or Rastafarian. Nearly a third of the sample declined to state their sexuality. Of those who did, the vast majority were heterosexual, three were lesbians and 12 were gay men. Ten people reported that they were bisexual. 1.2.5 Service provider sample Sixteen community organisations included voluntary and statutory sector mental health service providers and other mental health professionals in their studies. One comprised primary and secondary statutory mental health service providers only. These service provider representatives totalled 267 people. Figure 1: Ethnicity of community sample participants
391 (8%) 196 (4%) 342 (7%) 1,955 (40%) 831 (17%) 1,173 (24%) Asian or Asian British Black or Black British White and Other White Chinese Mixed Other

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KeY tHeMes And Findings

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2.1 Fear of mental health services
Fear as a barrier to accessing services was a constant, recurring theme in the majority of the study reports. Community members with little or no experience of mental illness were more likely to say that stigma, shame and their repercussions (such as the negative effect on marriage prospects) would prevent them seeking help. Those with direct experience of services, particularly as inpatients, were much more fearful of re-engagement with services. A number of studies explored these fears. They included fear of over-medication; fear of being sectioned under the Mental Health Act 1983 if they divulged all their mental health issues and problems to GPs and other primary care staff; fear of being mistreated by mental health services, and fear that their confidentiality would not be respected, in particular in relation to talking therapies: ‘I would rather talk to my cat than talk to a counsellor: it’s about trust, at least my cat isn’t going to talk.’ There was some evidence that fear was not a major issue for many Arabic-speaking, Kurdish, Turkish and Yemeni study participants, particularly males. However, reducing fear of mental health services was stressed as a priority in most of the studies. In most cases people described multiple fears, with complex connections to their own experiences and perceptions of services’ cultural competence, especially in relation to language, faith and religion: ‘I can’t speak English so if I needed to stay in hospital, what would the food be like, I wouldn’t be able to speak to the nurses – I would be very scared.’ Overall, the study participants were more likely to report fear about services’ lack of cultural competence than concerns about overt racism. However, studies of young people found some negative stereotypes and perceptions of mental health services: ‘Racist people work there and will try and drug you up.’ Another concern expressed particularly by young people was the belief, highlighted in several studies, that future work prospects would be adversely affected if the jobseeker had a record of mental health problems.

2.2 Effective therapies and interventions
2.2.1 Key findings Study participants and community organisations strongly criticised a perceived unbalanced approach to treatment, with an over-reliance on medication. ‘Man they said I was mad, mad till I was dangerous… What I say is I not mad, I sad and pissed off. I don’t have the energy to do anybody anything… but I was classed schizophrenic and injected all over the place.’ Some studies – of South Asian women who had experienced domestic violence and of Irish Travellers, Gypsies and asylum seekers – emphasised that, for some, treatment could never be fully effective because the situation that contributed to their mental health problems remained unchanged: ‘Despite using tablets for depression, I do not feel any relief because I am still experiencing domestic violence.’ 2.2.2 Medication A majority of the mental health service users, across all 79 studies, regardless of ethnicity, reported that the medication prescribed to them was effective, despite many experiencing unwanted side effects. However the majority of the mental health service users who had been treated only with medication felt that other and/or additional therapies would have made their treatment more effective. It was clear from the studies that choice and a combination of therapies were not routinely offered.

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2.2.3 Talking therapies There were far more positive than negative comments from mental health service users about the effectiveness of talking therapies (in both community and clinical contexts, and regardless of ethnicity, gender and age). However many study participants qualified their enthusiasm for talking therapies by stressing the importance of cultural competence: ‘All I want and need is to talk to a therapist that shares my culture so that I can unload. It is easier to talk to someone who knows and understands the culture.’ Several studies reported that people with mental health problems placed high value on family support as an element of effective treatment and felt that family counselling would be useful. A minority of mental health service users did not see talking therapies as necessary or effective, and some felt they were culturally inappropriate, especially Black Africans, asylum seekers and refugees, and Irish people, including Travellers. Confidentiality concerns were also raised. 2.2.4 Complementary and ‘alternative’ therapies Twenty of the 79 study reports discussed complementary or ‘alternative’ therapies. Ten of these were studies involving older adults, the majority from the South Asian and Chinese communities. Participants reported using a range of therapies, including traditional Chinese medicine, traditional healing practices, Reiki, Ayurvedic therapy, acupuncture, massage, meditation and various occupational therapies, and expressed a great deal of satisfaction with them. Overall, around one third of the South Asian participants in the studies that discussed complementary therapies thought that they should be included in a choice of culturally appropriate treatments for mental health problems. Black African, Black British and Black Caribbean mental health service users wanted increased access to music and art therapies, herbal remedies and swimming and relaxation therapy, and one study of Somali service users reported widespread use of ‘traditional healing’ among this population. 2.2.5 Social interaction and participation in activities Social interaction and taking part in activities were thought by mental health service users to maximise the effectiveness of their prescribed treatment. Ex-service users and those who had never had contact with mental health services similarly commented on the benefits for mental wellbeing of formal and informal socialising and participation in activities. Mental health support services, peer support groups and self-help initiatives were regarded as equally beneficial: ‘For me, it would be more social settings such as drop-ins, groups, so that it’s a way in to services without being called a service as such, so it’s based on a social activity with the added thing of building relationships, trust, self-esteem.’ 2.2.6 Voluntary and community organisations Voluntary and community organisations were seen as important providers of opportunities for social interaction because people felt they could be certain that they would meet others there who would understand their culture, language and religion: ‘We come to socialise at the centre for one day [a week] and it makes us feel good. There should be more days for us to socialise. We don’t like sitting at home.’

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KeY tHeMes And Findings HeAding continued
This review looks back at DRE’s work as its five year plan comes to an end. DRE has carried out an extensive programme of work and this review describes some of our key challenges, successes and learning. It also outlines how DRE’s work will be taken forward under New Horizons.

2.3 Culturally appropriate treatment
2.3.1 Key findings The need for greatly increased cultural competence by mental health services was universally and strongly expressed throughout all 79 studies. Many did not define ‘cultural competence’, but the overall message was very clear: participants wanted their language, faith and religion and their dietary and gender requirements to be acknowledged by mental health service staff throughout their diagnosis, treatment and aftercare. Some of the studies’ participants recognised that it was difficult for service providers to understand all aspects of their culture. However, as one study participant pointed out: ‘We understand that we are living in the UK, but just like we follow their rules and regulations for things, they need to try to understand that we cannot change our culture and tradition because this is what we have been taught/brought up with.’ Another said simply: ‘The psyche has not changed, it has been transplanted into a foreign place.’ 2.3.2 Language Language was identified as one of the major barriers (or, in some reports, as the main barrier) to accessing mental health services by a large proportion of service users, carers, community members and service providers. There was some evidence that satisfaction with mental health services was greater among those who could communicate effectively in English, those whose service providers spoke the same language, and those who were satisfied with their interpreters. Almost one third of the 79 studies reported that the inability to speak English was a major factor in the social exclusion of a large proportion of their samples, and that this adversely affected their mental health.

The reports identified communication difficulties throughout the journey through mental health services, starting from diagnosis: ‘Potentially, difficulties and problems may have been misunderstood or misrepresented and this could jeopardise appropriate and effective treatment. It can also create a barrier to effective and trusting relationships between service user and professional.’ A small number of studies highlighted difficulties associated with literacy problems, such as missed appointments, not understanding care plans and failing to take medication correctly. Studies also highlighted problems with the cultural and medical terminology of mental health and mental health services. When the community organisations translated their questionnaires into the languages of the target samples, it was noted that: ‘In many instances, the quality of the responses significantly improved whenever terms from the appropriate community language were used to explain and clarify key concepts.’ A commonly expressed need, across all ethnicities, ages and languages, was for jargon-free, simple information about mental health and mental health services. Several studies, particularly those among Black Africans and Black Caribbeans, commented on a common misunderstanding of the term ‘mental health’: ‘People thought the terms “mental health” and “mental illness” meant the same thing and said they referred to people who were not in their right mind... We found the term “mental health” was often being used as a short way of saying mental health problems.’

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2.3.3 Interpreting and translating services Translation and interpretation were seen as core issues that service providers must address, in the 60 study reports that included aspects of language in their investigations. Although a small minority of study participants were satisfied with the interpreting and translating services they had received, the study reports revealed significant unmet needs, regardless of ethnicity. These studies also stressed the lack of information about mental health and mental health services in languages other than English. ‘[Current] interpreting services did not seem to be solving the language difficulty in using primary and mental health services. This unmet need has led to frustration, stress, disappointment and a feeling of being treated unfairly.’ The lack of availability of interpreters was commonly reported by the study participants as a source of worry and concern, and in some cases it was said to have aggravated their mental health problems. Many study participants had little confidence in the professional interpreters they had been allocated. There was a very commonly expressed request for interpreters to be ‘qualified’ and ‘trained’ in mental health issues and to be familiar with the culture of the person for whom they were interpreting. Some study participants did not trust that their words were being correctly interpreted. Many mental health service users reported using family members, friends and contacts in the community (such as people from community organisations and places of worship) to interpret. However some people did not want to divulge personal information to a family member, or feared their words would be deliberately misinterpreted, with the justification that this was ‘in their best interest’. Using a family member as an interpreter could present particular difficulties for South Asian women who had experienced domestic violence: ‘The bad thing was that my English was not good, but they never arranged an interpreter for me. So every time my husband came and translated for me. I could not say much.’ Study participants commonly agreed that: ‘We want a service where the workers understand our language and not have an interpreter. We want to be able to explain our own problems.’ 2.3.4 Faith and religion A total of 36 studies explored in varying depths the spiritual needs of mental health service users and their experiences of using services. The vast majority of these studies reported a lack of awareness among statutory mental health service providers about faith and religious needs. In contrast, voluntary and community organisations were reported as giving a much higher priority to faith and religion and their importance for some Black and minority ethnic communities. These services were greatly appreciated. However some studies stressed that service providers should not make assumptions about a person’s religion based on their skin colour or name: ‘Not everyone who classes themselves as a Muslim is actually a practising Muslim. This information would prove important if setting up services, as assumptions cannot always be made regarding a person’s requirements based on their religion – e.g. not all Muslims require Halal food.’ Many studies stressed the importance of accommodating religious perspectives with western models of mental health treatment: ‘I think where service users are spiritual, it helps them understand their problems and how they see the world. You can’t ignore people’s spiritual needs... We need to build bridges and find solutions.’

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KeY tHeMes And Findings HeAding continued
This review looks back at DRE’s work as its five year plan comes to an end. DRE has carried out an extensive programme of work and this review describes some of our key challenges, successes and learning. It also outlines how DRE’s work will be taken forward under New Horizons.

2.3.5 Food The majority of the study reports included the provision of culturally appropriate food in their recommendations aimed at increasing services’ cultural competence. Dissatisfaction with the lack of culturally appropriate food was expressed by all ethnicities represented in the studies. Several studies made the point that this added to the stress of people who were mentally ill and in hospital, isolated from their families, friends and usual activities. Only one study reported largely positive experiences. Some service users said they asked their families to bring meals to them in hospital or, if they attended day centres, ate before they went. 2.3.6 Gender-specific services Sixty-six of the 79 study reports discussed some aspect of gender, many of them in detail. These included 39 that addressed the issues of gender-specific services and staff. Many of the study participants identified mixed gender services as a barrier to accessing mental health services. This was a problem especially, but not exclusively, for women. These participants wanted gender-specific mental health services, and some wanted female-only or male-only areas within hospitals and treatment centres: ‘For [Muslim and Orthodox Jewish] women, being left alone with men can aggravate [mental] distress further because keeping their personal space private and away from men is an essential aspect of their devotional life.’ Several study reports pointed out that mental health services need to offer childcare if mothers of young children are to attend. Need for male-only services was reported in studies with men from many ethnic groups – Bangladeshi, Somali, Black Caribbean, Irish and others.

Suggestions included supported housing for South Asian men with mental health illnesses, mental health services specifically for Irish men, because ‘A lot of Irish men get no help’, and Black Caribbean men’s groups ‘for talking as men... to help them socially, motivate them, be therapeutic and give them useful ideas’. 2.3.7 Gender of staff A majority of study participants who discussed the gender of staff wanted to be treated by a mental health professional of the same gender as themselves, or to have the choice. This appeared to be more of an issue for females than for males. ‘Male nurses in hospitals were considered inappropriate for religious women concerned about personal modesty and [who had] limited contact with men other than husbands and close relatives, such as fathers and brothers.’ ‘Older generations of Asians find talking to a stranger of the opposite sex “taboo.”’

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2.3.8 Factors affecting the mental wellbeing of women The studies identified a number of cultural factors that affected the mental wellbeing of Black and minority ethnic women. These included isolation, women’s role in the family, the stigma of mental illness and of being seen to be ‘not coping’ with their family responsibilities, powerlessness, violence, and the asylum-seeking process: ‘My husband used to beat me up all the time, my in-laws always abused me... I lost my confidence, I was scared, mentally distressed. I always had a headache... I could not do anything properly. I was always crying and began to consider myself useless.’ (Study on domestic violence among South Asian women) Many female asylum seekers expressed concerns about the effect of their own poor mental health on their children: ‘Day and night I think about it. I can’t sleep or look after my children properly. I keep wondering what I did wrong in my life to be treated like this. My fear of going back [to her home country] is huge.’ 2.3.9 Factors affecting the mental wellbeing of men Almost two-thirds of the community engagement project’s total sample was female, which may in part be a reflection of some men’s reluctance to talk about mental health problems (their own and others’) and to seek help. For example, in one study of 100 Black African men, three-quarters said that they had poor mental health, but the majority said they would not seek help for it: ‘Because as a black man, I feel if I tell someone, they will think I am weak. So we tend to keep it to ourselves.’ A few studies did highlight gender-specific issues for men. Male asylum seekers from a wide variety of ethnicities talked about the impact of seeking asylum on their self-esteem, and in particular being unable to work: ‘Asylum seeker’s life is disabled life – we don’t know who we are and we can’t do anything [work].’ Several studies among a variety of ethnic groups discussed how social isolation negatively affected men’s mental wellbeing: ‘I get out, walk around, see people and keep myself busy. If I didn’t, I’d be like the other guys in the hostel [where he lives] who just sit and get more depressed.’ (Study of Irish men) 2.3.10 Ethnicity of staff Most (67) of the 79 study reports explored participants’ views about the ethnicity of mental health service staff. This was clearly regarded as another important element of a service’s cultural competence. However, the major expressed need identified by this project was for mental health services and staff that are empathetic and sensitive to cultural and religious needs. Many of the participants, regardless of ethnicity, gender and age, argued that this could be achieved if staff were of the same ethnicity as their patients. Matching the ethnicity of staff and patients was especially demanded by service users, but it also was seen as essential by other study participants: ‘They should find another black person that understands a black person [to treat me], that’s the only way, you know, because I can relate better to them than I can relate to a white man.’ However, some – especially Black Caribbeans, Jews and South Asians – disagreed: ‘Ethnicity isn’t important – it’s the amount of knowledge they have and how much support they are going to provide... that is most important.’ Voluntary and community organisations were commended for providing services (including mental health support services) in religiously and culturally supportive environments, and a major reason for this was reported to be because they were staffed by people who were the same ethnicity and spoke the same language(s) as those who visited them.

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2.3.11 Racism in mental health services By no means all the study participants used the term ‘racism’ (or ‘discrimination’) to describe the failure by mental health services to address their language, faith and religious, dietary and gender needs. As one of the study reports pointed out: ‘... it seems that only direct discrimination is recognised and that, for example, lack of access to an interpreter to facilitate engagement is not identified as discrimination.’ Nevertheless, some study reports were in no doubt that mental health services’ lack of cultural competence amounted to institutional racism. Of the different ethnic groups that participated in this project, Black Africans and Black Caribbeans were most likely to refer to racism in mental health services: ‘As a Black person with a mental health problem, you’re just walking into a field of stereotypes. It’s about being big, Black and dangerous. It’s the known one – it’s the phrase that people use.’ A smaller proportion of South Asian study participants used the term ‘racism’ to explain their negative experiences of mental health services, even though they felt that their cultural needs were not being met. One study reported that this was because South Asians were ‘too embarrassed’ to complain to the community researchers about racism. A minority of participants, across ethnicities and including White minority ethnic groups, reported that they were not (or did not expect to be) treated fairly by mental health services because of their ethnicity or cultural background. Racial abuse from other members of the public was an underlying theme throughout the study reports. This was reported by all Black and minority ethnic groups (including the Other White groups, such as Irish people, Irish Travellers and migrant workers from Eastern Europe), but particularly by Muslims and asylum seekers.

2.4 The journey towards recovery
Recovery, how it is defined and factors facilitating and hindering it, were explored to varying degrees in eight studies. Factors that facilitate recovery were identified as support from family and friends, ‘keeping busy’, a positive attitude, faith and religion, and medication. Absence of these factors was seen as hindering recovery. For example, support from family and friends was seen as a facilitating factor when present and as a barrier to recovery when absent. Other factors identified as hindering recovery included the stigma of mental illness, returning to the same unchanged environment after treatment, a poor experience of treatment, and disbelief that recovery is possible. ‘Society stigmas people and if they see someone with that mental illness condition I do not think they are so willing, so accepting, and that is how I picked up on that prejudice or became affected by that prejudice and I either became withdrawn or segregated myself and realised that I had become marginalised.’

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2.5 Service user and carer satisfaction with mental health services
2.5.1 Key findings It is self-evident that levels of satisfaction with mental health services, as well as being highly individual and subjective, will be inextricably linked with the issues, fears and criticisms of services raised elsewhere in this report. Fifty-four of the 79 study reports discussed various aspects of users’ and carers’ satisfaction with services, although only a minority were explicitly asked how satisfied they were. Overall, study participants reported a wide variety of experiences and levels of satisfaction with mental health services. There were many accounts and much statistical data showing that services had made a positive impact. Equally, there were some powerful stories of problematic experiences. 2.5.2 GPs Levels of satisfaction with GPs varied greatly between and within studies. Greater satisfaction was reported where a GP had referred the patient to secondary care services. Where a GP prescribed medication only, there were many reports of dissatisfaction: ‘My doctor’s behaviour was not good… only medicine is not enough for treatment.’ 2.5.3 Medication As previously reported, some service users’ fear of mental health services centred on what they saw as a tendency to over-medicate. It was clear from the study reports that the kind of medication and the circumstances in which it was prescribed greatly influenced levels of satisfaction with mental health services: ‘They lied to me... Convinced me to take the drug/poison, and then injected it into my bum... After this, I could not function.’ 2.5.4 Religious sensitivity Several study reports on the Orthodox Jewish and South Asian communities focused on levels of satisfaction with mental health services’ sensitivity to their faith or religion. Experiences varied: in one study of South Asian service users and carers, almost two thirds of those who had used their GP services felt they were culturally and religiously sensitive. However, other studies, especially among Muslim samples, found much higher levels of dissatisfaction with services because of their perceived religious insensitivity. Studies among Orthodox Jewish communities also reported dissatisfaction with primary care services because of their lack of understanding of religious practices. 2.5.5 Communication Many of the study reports related satisfaction levels to the quality of communication and clarity about the treatment given by services. Dissatisfaction was expressed in particular by people who had not had their treatment explained to them, or whose views were ignored. As a study report summarised: ‘Where someone’s illness was explained and understood... and a choice of treatment offered, people, in general, had a much better perception of the mental health services provided.’ 2.5.6 Staffing levels Shortages of staff and lack of time for appointments, particularly with consultants, affected satisfaction levels, regardless of ethnic group. Several studies reported dissatisfaction with having to see a different member of staff at each consultation or counselling session, and having to repeat the same information at every appointment: ‘With mental health people I didn’t need every day somebody with a new face... You get close to her, then the next day somebody else comes in. It’s painful – you have to tell your story and how you are feeling over again.’ 2.5.7 Inpatient services Satisfaction with hospital inpatient services varied among those who had experienced them, and was, as highlighted above, often dependent on a service’s perceived cultural competence.

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Overall, most people were dissatisfied. Many of the study participants who were (or had been) in hospital because of mental illness were there as a result of a compulsory detention order under the Mental Health Act 1983. The majority of these were Black African, Black British or Black Caribbean. In these circumstances, their level of satisfaction was low. In addition, a choice of treatments was not always offered to those detained under the Act and these service users reported a high level of dissatisfaction about their lack of control over their situation, and the attitudes and behaviour of staff: ‘No-one spoke to me or helped me work through my problems in hospital – I was left to wander around, being offered drugs by other patients. Staff did not seem interested in me. The whole experience was very isolating and scary and I would avoid ever going to hospital again.’ Feelings of cultural isolation were a recurrent theme: ‘I don’t talk with [staff or other patients]. I talk very little. There are no other Chinese patients here… I just want to leave hospital. This is an environment for English people.’ However some studies reported high satisfaction with inpatient services: ‘The best support I’ve received was the psychiatric care. Things got worse before they got better and it took me a while to get the help I needed... [but] I feel better today, I’ve got things going on and my life is moving forward.’ 2.5.8 Talking therapies A wide range of satisfaction rates with talking therapies was reported. As previously highlighted, satisfaction was strongly related to whether or not the therapist was perceived as being able to understand the patient’s culture and, particularly, communicate in the same language.

Some study participants found talking therapies unhelpful, particularly Black Africans and some asylum seekers and refugees. One study report explained: ‘[There is a need for] a clear definition of counselling as this service is not popular in Africa. For people to understand the need of counselling, they first need to understand what counselling means.’ 2.5.9 Complementary and ‘alternative’ therapies Overall, although only a minority of study participants had received complementary or alternative therapies, they were satisfied with them and preferred them to medication and talking therapies. 2.5.10 Aftercare services Study participants expressed dissatisfaction with the shortage of aftercare services and the lack of information about them. The following are representative of many comments: ‘I was not given any information when I left [hospital]… I didn’t have a clue where I should turn to, not a clue where I was supposed to go or who I was supposed to go to and talk to if I became ill again.’ ‘I was kicked out of the system and I had to fend for myself – I had nowhere to go, nowhere to live – no care co-ordinator or CPN [community psychiatric nurse].’ 2.5.11 Care plans Levels of satisfaction with care planning were not consistent across the study reports but, overall, a majority reported a lack of satisfaction – and, indeed, a lack of care plans. Even where care plans were provided, there were complaints that people were not involved in writing them. However a small minority of the study reports recorded a more positive experience of care planning, such as a study of Black African, Black British and Black Caribbean women, two-thirds of whom said they had been consulted on their care plans.

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2.5.12 Day centres Satisfaction with day centres was discussed by only a small minority of the studies. Two studies, with Irish people and with older South Asians, reported some positive experiences of accessing day centres and satisfaction with being ‘looked after’: ‘It’s good that they have day centres because when you attend the staff can notice the warning signs and changing patterns.’ Others disagreed, however: ‘Mainstream [day centres] offer services that cater mainly for white people, therefore understanding particular problems of Asians – i.e. jinn possession/nazar (evil eye) etc will not be understood.’ 2.5.13 Mental health services provided by the voluntary sector and community organisations Voluntary agencies and community organisations providing mental health services tended to score highly in satisfaction ratings. Comments on their mental health services were not as plentiful as those on statutory primary and secondary services, but the support and activities they offered were seen by those using them as invaluable for maintaining their mental wellbeing. 2.5.14 Services for carers Two study reports specifically targeted carers, but many others included carers in their research focus and samples. Overall, a total of 344 carers participated in this project and they were overwhelmingly dissatisfied with services. As one participant in a study of Black African, Black British and Black Caribbean carers put it: ‘There is a long way to go before the system is acceptable to Black African and Black Caribbean people. No-one takes us seriously, and we are the ones that know our men best. We live with them and we know what triggers them [their mental health problems].’ Establishing and building positive working relationships between service providers and carers was often reported to be problematic. Frustrations were particularly expressed with communication between hospitals and service users’ families. Several studies reported carers’ difficulties in accessing support: ‘I had no help or information in the first year. I didn’t have a social worker or know that people could help me.’ The issue of carers’ assessments was highlighted in one report of a study on dementia. Half of the 78 carers in the study had been assessed and two-thirds of those said they were dissatisfied or very dissatisfied with the outcome.

2.6 A more active role for Black and minority ethnic communities and service users
The NIMHE Community Engagement Project was designed to contribute towards one of the DRE building blocks, to ensure that Black and minority ethnic populations have genuine opportunities to influence mental health policy and provision, and to promote mental health and recovery. This project allowed 547 community researchers, 75 community organisations, 935 Black and minority ethnic current or ex-mental service users, 344 carers and 4,472 other community members to contribute to the development of mental health policy and to the planning and provision of services. The project outcomes reported in section 3 below give more details of this achievement in terms of the outcomes for individuals, community organisations and communities, from a variety of perspectives.

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3.1 Outcomes for the community researchers
Community organisations were asked to complete an exit form at the end of the project. The form included items about the outcomes for the individuals who worked on the project as community researchers. A wide range of positive outcomes was reported, including enhanced communication skills; knowledge of mental health conditions and policies; knowledge of community research skills; learning about mental health service user perspectives; project management skills; building confidence; Lorna Markland, Community development worker with Bedfordshire and Luton Mental Health and Social Care Partnership NHS Trust, describes her involvement with the NIMHE community engagement project and how it has helped local BME communities. I am currently employed as a Community Development Worker for Bedfordshire and Luton helping to deliver race equality in mental health care. My journey into mental health work began when I joined the NIMHE community engagement programme. I was lead researcher with my church’s mental health project, Dignity, in Luton. Dignity conducted one of the initial pilot projects on mental health needs in 2005/6. The research has given me a very good understanding of the issues and the improvements people wanted to see. One of the first things I wanted to change was to demystify the mental health services among the community. Not enough was known in the community about services on offer, so I worked with staff in my mental health trust to develop the website, create leaflets and let people in the community know that there is a range of pathways they can access to get help. networking and meeting people outside usual circles; progression to jobs in mental health work with Black and minority ethnic people, qualifications from UCLan, and plans to undertake further study, including degrees in psychology and social work. Some of the community researchers were asked to give short accounts of their experiences in their study’s report. These also described very positive personal experiences and outcomes from the work, as the extract from one of these accounts, below, shows. One of the recommendations made in our community engagement report was that more links and partnerships should be made between organisations and the community. Since taking up my post I have worked on partnership projects with various organisations such as Nyabingi service user charity, Mind, the mental health organisation, and Impact service user involvement group. At the moment I am working on improving cultural competence training within the trust, and assessing what people really need from cultural competence training to bring about positive change for service users. I also hold a key position within the Trust’s BME Staff Network. Playing a useful role in tackling inequalities, especially around ethnicity, is exactly what I want to be doing. I love my job and am pleased that I have found a way to combine my passion with developing a career in this way. I am at present looking for a relevant university course to assist with my progression to the next level.

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3.2 Outcomes for community organisations
The project’s exit forms also recorded outcomes for community organisations, including that some had gained funding for further projects related to mental health work; presented their studies’ findings at DRE Local Implementation Team (LIT) meetings; strengthened their links with primary care trusts; made connections with key people in mental health services; progressed on the implementation of their studies’ recommendations; and received continued financial support for projects on the basis of their studies. In addition, several community organisations were asked to give accounts of the outcomes: extracts from one of these can be found in the box below. Aap ki Awaaz Project – Rethink, Birmingham Ajaib Khan, Project Co-ordinator, describes the Aap ki Awaaz community engagement project in Birmingham, and what it continues to achieve. Rethink put forward a successful application to conduct a community engagement project in 2006. The study explored the Pakistani community’s view of mental health and mental health services in Birmingham, and was conducted by a team of 12 members of the community. We conducted 152 interviews with members of the community, and held two focus groups (one with service users and the other with carers). In addition a self-completion questionnaire was circulated to 30 service providers (only seven responses were received). A number of recommendations are currently being progressed. A wide range of initiatives have been undertaken in partnership with various organisations. These include provision of a Mosque roadshow, promoting mental health awareness and showcasing services and resources available.

3.3 Outcomes for Black and minority ethnic communities
As reported earlier, an online survey was conducted of the CDWs appointed as part of the DRE programme to engage communities in planning services. The aim of the survey was to obtain their views of the outcomes of the community engagement project and its impact within the communities it targeted. A request (and a reminder) to complete an online survey was sent to the 419 CDWs on the NMHDU database in July 2009, and 140 responses (33%) were received.

There has also been a substantial media campaign to raise awareness of mental health issues and the findings of the research, including interviews on local radio and TV and in the press. A pilot training programme in mental health was conducted for Imams (mosque prayer leaders) and mosque leaders from across the West Midlands. Work is also underway to set up a mental health clinic that will operate from the mosques, staffed by volunteer Muslim doctors, consultants and psychiatrists. Training has been funded by the Birmingham & Solihull Mental Health Foundation Trust to enable a specialist Islamic counselling service to be set up for the Muslim community, staffed by trained volunteers and including a telephone helpline. Further proposals include working with service providers to tackle the barriers to accessing mental health services in order to improve community engagement and help to fight mental health stigma within the community.

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Almost half (63) were aware that the community engagement project with UCLan had taken place (13 were unsure) and 42 said they had been involved in working with the project in some capacity. Of 72 CDWs, 40% (29) had observed improvements in mental health services for Black and minority ethnic communities as a result of the NIMHE Community Engagement Project, 21% (15) were unsure if improvements were connected to the project, and 39% (28) said they had not observed any improvements connected to the project. Key improvements included improved awareness and understanding, improved community contacts and community engagement, better services and information, improved communication and contact with commissioners. The improvements most frequently cited were that the project highlighted Black and minority ethnic communities’ mental health service needs and raised the profile of mental health issues in the communities (see figure 2). Obstacles in trying to achieve improvements were reported by 57 CDWs in total. Those most frequently mentioned were lack of financial resources, and lack of support from healthcare professionals. Other obstacles mentioned less frequently included: • ack of local support or only tokenistic support l from commissioners, primary care trust service providers and senior management • acism/institutional racism/lack of interest in r Black and minority ethnic communities • solation of CDWs, coupled with lack of i support and training and unreasonable demands to show outcomes • ack of strategic direction l • lack of power to really effect change.

Figure 2: How did the DRE community engagement project help to bring about these improvements?
100% 80% 60% 40% 20% 0%
88.6% (31) 65.7% 57.1% (23) (20) 37.1% (13) 8.6% (3) 85.7% (30) 68.6% (24)

Highlighted community needs Helped to open up access to communities for service providers/commissioners Helped identify new services that are needed Raised profile of mental health issues in the communities Created a team of trained community researchers to continue work in the community for service improvement Developed links between community groups and service providers and commissioners Other

Some CDWs provided more detailed comments: ‘The projects were very worthwhile. They helped CDWs to look directly at community concerns and pick up on the main issues. However CDWs have been limited financially in trying to meet the needs identified.’ ‘While it was a brilliant idea, there was no commitment by the NHS to take community engagement forward. Another tick box exercise.’ ‘Even though I have not observed any direct improvement, the community engagement project reports did give me inspiration and tools for working towards improving mental health services for BME communities in my particular area.’

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This section summarises the detailed recommendations from the community engagement studies of the next steps needed to reach the DRE aims. These are presented under the following headings: • ear of mental health services F • ffective therapies and interventions E • ulturally appropriate treatment C • he journey towards recovery, and T • ctive involvement of BME communities A and services users and carers.

4.2 Effective therapies and interventions

4.1 Fear of mental health services
A range of measures aimed at working gradually towards lessening fear were suggested. • Education – to increase awareness of mental health conditions and reduce the stigma attached to them, in a variety of media, in the relevant locally used languages and in written, oral and visual formats. • Terminology – a more acceptable term for ‘mental health’ services. • ore community-based services – M services that are offered in a particular locality, and staffed and run by members of a specific Black and minority ethnic community. • Service user roles – more opportunities for service users to participate in planning services, advocacy services and mental health training for new and existing professionals, and encouragement to set up self-help and peer support groups. • upport groups – more culturally S sensitive support groups on stigma and the consequences of denial of mental health problems. • Partnerships – partnership working between community organisations and national mental health organisations, such as the Alzheimer’s Society, to challenge ignorance and stigma about mental health problems within the community.

Choice and combination of treatments – including talking therapies, complementary therapies, social interaction, and leisure, educational and occupational activities. ommunity-based social interaction and C activities – opportunities for social interaction and participation in activities to maximise the effectiveness of prescribed treatment for those with mental health problems and maintain the mental wellbeing of other community members. ncreased access to talking therapies I – these must be culturally, spiritually and linguistically appropriate. Increased access to complementary therapies – available as standard treatments within mainstream mental health services.

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4.3 Culturally appropriate treatment and interventions
4.3.1 Language • ranslated information – more translated T written information in relevant local languages. • Information in a variety of media – phone lines, DVDs and workshops, and also radio and television programmes and websites. • ilingual workers. B • etter access to interpreters. B • ommunity workers who speak the local C community languages and can provide information about mental health services and signpost people with mental health problems and their carers to them. • raining for interpreters in mental health T and cultural issues. • nglish classes. E • eview translating and interpreting R services to identify unmet needs, audit their quality, and monitor service users’ language needs. • ncreased funding for interpreting I services. • ther recommendations include: O – train members of local communities as translators and interpreters – do not use family members as interpreters.

4.3.2 Faith and religion Religious beliefs to be explored at diagnosis and during treatment. • Training in the different faith and cultural traditions – to be a central component of the training and continuing professional development of all staff who work in mental health services. • artnership work between mental health P service providers and religious and community organisations. • reater treatment choice. G • Appropriate inpatient facilities with resources for religious practices, including worship. • issemination of good practice throughout D mental health services.

4.3.3 Food • taff training on dietary needs. S • he provision of halal and T vegetarian food. • lack and minority ethnic chefs. B • ood-based activities as an element F of mental health services.

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4.3.4 Gender • ender-specific services – centres for G women and men, outreach workers to target housebound women, gender-specific spaces within mental health services. • hoice of same-gender workers. C • mprove women’s knowledge of mental I health services. • rovision of childcare at mental health P services. • ew posts to address the mental health N service needs of local Black and minority ethnic women. Alimas and alims (female and male Muslim scholars) to be employed to work with mental health services. • ducation and involvement of E religious leaders and workers in mental health issues. • raining for mental health service T professionals on a variety of issues linked with gender, including domestic violence and the effect of the asylum-seeking process on mental health. • ommunity member and service user C involvement in services. • urther research on: F – the mental health needs of young Black Caribbean males who are vulnerable to suicide – women with mental health problems who also experience domestic violence and other abuse – the effect of mothers’ poor mental health on their children and families – a longitudinal study of women’s experiences in mental health services, to demonstrate pathways to recovery. 4.3.5 Ethnicity of mental health service staff • ncrease the numbers of Black and I minority ethnic staff. • Involvement of Black and minority ethnic communities, including users of mental health services, in staff training in cultural competency. • Increase volunteering in mental health services among Black and minority ethnic populations. • rganisational representation by Black O and minority people on relevant local NHS and primary care trust forums, and panels concerned with detention under the Mental Health Act 1983. • ore Black and minority ethnic M advocates, ambassadors and champions.

4.4 The journey towards recovery

Action to address the social exclusion of service users. aith and religion – stronger links between F mental health services and faith- and religion-based organisations. ncreased community awareness and I understanding of mental health. eer support – statutory services to link to P self-help groups, mentoring and befriending.

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4.5 Active involvement of Black and minority ethnic communities, service users and carers
Many of the following recommendations echo those above, and represent the overall message that emerged from all the studies – the need for greater involvement of Black and minority ethnic communities and service users and carers in the planning, organisation and delivery of mental health services. Detailed recommendations include:

• • •

training and proactive recruitment of Black and minority ethnic people so that they are represented at all staffing levels within mental health services community-based services, staffed and run by members of the target community service user input into planning services service user input into advocacy services increased input by Black and minority ethnic community members (including mental health service users) into cultural competency training for all mental health service staff, including all those who treat service users and come into contact with them (such as receptionists) and for chefs and interpreters

support to Black and minority ethnic community organisations and their members (including mental health service users) to provide information to members of their communities about mental health and mental health services, in order to address the stigma of mental illness and encourage help-seeking encouragement to set up self-help and peer support groups for service users and other community members who want to maintain their mental wellbeing unding for community organisations to f provide opportunities for social interaction and a range of leisure, educational and occupational activities partnerships between mental health service providers and religious and community organisations to increase all parties’ knowledge and awareness of faith and religious mental health service needs ecruitment of Black and minority ethnic r chefs to work in mental health services that provide food ecruitment from the local community of r bilingual workers, interpreters, community workers, outreach workers, ambassadors, advocates and champions to act as links between mental health services and the community pportunities for service users to o volunteer at the services they attend, and ervices to encourage peer support to s service users via mentoring and befriending.

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A number of individuals were invited to contribute personal and professional commentaries on aspects of DRE. This is an excerpt from the reflections on DRE and the way forward offered by Marcel Vige, Manager of Diverse Minds at Mind. The real dilemma for DRE has been the need to negotiate the divergent beliefs, views, even political priorities about the nature of its subject matter – where does the catch-all phrase BME begin and end? Is ethnic disparity an aberration arising from inadequacies within mental health or an inevitable function of wider differentials? To what extent can the ideal of cultural competency in therapeutic approaches be achieved, whilst adhering to clinical versions of ‘normality’, and the perceived need for threat-management? Whilst the very essence of what DRE is about is in a state of flux, somehow the strategy has had to progress with its change agenda – akin to navigating a journey upon shifting sand.

Despite this backdrop, DRE has been successful in generating an array of local projects that engage communities in novel ways. Also, within some PCTs, DRE has underpinned a shift in consciousness around responding to the mental health needs of diverse communities. A critical aspect of this was the willingness of the PCT to take risks – supporting projects to engage with communities in creative ways. Though it’s hard to quantify such effects, it’s fair to say that the extent to which DRE has facilitated improvements in understanding of and response to BME mental health issues at the juncture between local strategy, implementation and service provision is indicative of its overall success. Though unfortunate that such leadership fell short in maintaining the consistency and integrity throughout its implementation, DRE has laid down a foundation both in terms of community-based engagement projects and increased capacity of local service developers and providers to make provision culturally competent. The task going forward will be to incorporate such approaches into strategies such as New Horizons1, World Class Commissioning2, professional training and development, indeed all initiatives and strategies that have a bearing on BME mental wellbeing. DRE was the first step. The question now is “Where to from here?”

1 2

Department of Health (2009). New Horizons: towards a shared vision for mental health. Consultation. London: Department of Health. See www.dh.gov.uk/en/Managingyourorganisation/Commissioning/Policyguidanceandtoolkits/DH_100305

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1: Department of Health (2005)
Delivering race equality in mental health care: an action plan for reform inside and outside services and the Government’s response to the independent inquiry into the death of David Bennett. London: Department of Health.

2: Fountain J, Patel K, Buffin J (2007)
Community engagement: the Centre for Ethnicity and Health model. In: Domenig D, Fountain J, Schatz E, Bröring G (eds). Overcoming barriers: migration, marginalisation and access to health and social services. Amsterdam: Foundation Regenboog AMOC pp. 50-63.

3: Norfolk, Suffolk and Cambridgeshire

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