The UK is highly culturally diverse, with 4.6 million people living in the UK being from an ethnic minority background, making up 7.9% of the population (Census April, 2001, Office for National Statistics). However, over the last few decades, an increasing body of empirical research, survey evidence and user testimonies (Audit Commission, 2003) have highlighted the difficulties facing individuals of the black and ethnic minority communities (BME) in their experiences of mental health services. Moreover, high-profile incidents such as the death of David Bennett (Norfolk, Suffolk and Cambridgeshire Strategic Health Authority, 2003), a 38-year-old African Caribbean man who died after being forcibly restrained by nurses in a medium secure unit, have re-ignited the discussion on the prevalence of “institutional racism” and the inequality experienced by members of BME communities (Singh, 2007; Patel and Heginbotham, 2007).
The grey literature on access to mental health services in ethnic minorities warrants further investigation. In so doing, this literature review will outline and critically analyse the barriers commonly faced by members of the BME community, such as cultural bias, negative attitudes, discrimination and lack of sensitivity awareness among personnel and lack of funding Recent community development programmes and ongoing government-funded initiatives aimed at successfully removing these barriers shall also be interwoven in the review.
Mental Health in the BME community
In the UK, individuals from ethnic minorities are grossly overrepresented in acute psychiatric services. It has been reported that the diagnosis of schizophrenia is two to eight times higher for African Caribbean people compared to the white population (Harrison, 2002) and the diagnosis of depression is also higher in South Asian and African-Caribbean populations (Nazroo, 1997). Furthermore, Neeleman et al (1997) also found higher rates of suicide in South Asian groups to the white population. However, despite these high levels of mental health compared incidence in groups within ethnic minorities, a large number of individuals remain unknown to services and there is often a lower voluntary uptake of services compared to the general population (Rethink, 2007).
A number of situational risk factors have been offered as explanations for these higher rates of incidence and lower uptake. For example, the social and financial burden of care for individuals with mental health problems can be greater for carers from ethnic minority communities as sub-standard housing, high levels of unemployment, and poverty may increase the challenges associated with looking after a person with mental health difficulties. Furthermore, as socioeconomic status has often been linked with mental health (Kirkbride et al., 2008), members of the BME community may find themselves at further disadvantage. However, in recent years, the disadvantages afflicting BME communities within mental health services have come to light. Whilst BME communities certainly face difficult pathways to mental health services, the days of attributing complete blame to situational factors has come to end. Instead, attention has shifted to the host of non-situational, social factors such as racism, cultural bias, stigma and lack of adequate funding that all play major contributing factors in the negative experiences of individuals from BME communities (McKenzie and Bhui, 2007).
Discrimination and Racism
Those affected by mental illness often face considerable discrimination as they suffer the symptoms of certain conditions on one side, and an underbelly of public discrimination and stigma on the other (Corrigan, 2004; Hastings, Sjostrom & Stevenage, 1998). These individuals are often viewed negatively by members of society who harbour stigmatising attitudes, possibly resulting in a reluctance to seek help, high patient dropout rates, poor treatment adherence and poorer outcomes for rehabilitation programmes (Rimmerman, 1998).
However, people coping with mental health in BME communities suffer a “double jeopardy” (O’Hara, 2003), facing disadvantages associated with both mental health such as the associated stigma (McGrother et al., 2002), but also of racism. Racism is a form of discrimination that originates in the belief that groups should be treated differently because of phenotypic differences (Modood et al., 1997).
Considerable research has suggested the operation of “institutional racism” within the mental health services. For example, in survey findings from a series of community consultation events involving BME groups around England, researchers found that 78% of Black respondents and 61% of Asian respondents saw staff racism as a serious problem. These respondents saw themselves as being perceived as “at the bottom of the pile” in terms of priority, (Real Voices, 2003). One woman, of a South Asian background recounted that BME communities “…have been marginalised for too long in the mental health service” (Real Voices, 2003). In a focus group of twenty-four mental health service users and nine staff, researchers found that the overarching themes emerging from the service users from BME communities were those of voicelessness and powerlessness in the mental health service process (Chandler-Oatts & Nelstrop, 2008).
In the government’s recent “No health without mental health” strategy, the report published findings that young children and adolescents from ethnic minorities are particularly at risk for mental health because of racism and racist bullying (Mehmooda, 2011). Furthermore, the Macpherson (1999) report considered the death of David Bennett, a black patient in a mental health unit, and partly attributed his death to institutional racism. The inquiry report alluded that the inequalities suffered by black and minority patients was a “festering abscess which is at present a blot upon the good name of the NHS” (Norfolk, Suffolk and Cambridgeshire Strategic Health Authority, 2003). Since the publication of the report, institutional racism was declared to be a national problem by the UK National Health Service (Sashidharan, 2003).
However, the racism that members of BME communities feel is often indirect which makes the situation more complex. Whilst service managers may not deliberately discriminate, it may take place regardless. Fernando (1991), for example, argued that the ideology of racism is deeply intertwined with European psychiatry, and that the individualistic Western emphasis on mental health means that issues of race and culture are too frequently sidelined.
Whether direct or indirect racism operates in mental health services, there is no doubt that it can have potentially serious effects on the experiences of individuals from ethnic minority communities. Burke (1984) reported a relationship between depression and racism in a community sample of West Indians living in Birmingham. On a larger scale, the Fourth National Survey of Ethnic Minorities surveyed 5196 individuals and provided evidence of associations between racism and mental illness. It was found that those who had experienced racist abuse were three times more likely to suffer from depression and five times more likely to suffer from psychosis.
However, whilst there are increasing numbers of publications on the higher rates of incidence of mental health among ethnic minorities, ethnic community members have expressed their discontent that they rarely receive information or even, adequate responses to their expressed views on what needs to change within services (Chakraborty & McKenzie, 2002; Bowl, 2007). Moreover, although institutional racism is a well-recognised problem in the NHS, it remains in a “black box” (Bradby, 2010) due to the confusion as to who the blame should be attributed. McKenzie and Bhui (2007) argue that it is the responsibility of the institutions to eradicate racism, not the individual clinicians, as it is the institutions responsible for providing adequate services such as interpreters and culturally trained therapists (McKenzie and Bhui, 2007). However, it is the institutions that often fail to take responsibility.
Latent cultural bias and stereotypes against ethnic minorities may also be present in mental health services. For example, a commonly held stereotype is that South Asian families have large extended families and “look after their own” which may lead service planners assuming that people with mental health difficulties are less in need of support from services (Ahmad & Atkin, 1996). In reality, however, these South Asian families may be severely fragmented by migration to Britain and may therefore, be in serious need of adequate service provision.
Services in the UK, more often than not, adopt individualistic Western viewpoints on what is best for those with mental health issues. These perceptions however, frequently run counter to the needs of ethnic minority communities and may be responsible for alienating families from certain ethnic minorities where an emphasis is placed on collectivist, group-orientated principles. The values of family and community in South Asian families for example, are different to Western values, and the failure to take these values into account may leave families feeling isolated. Research has suggested for example, that the presence of cultural biases within Western mental health policies and services go against collectivist principles and beliefs about curability and “karma” in certain South Asian communities (Jervis, 1987), thereby discouraging the uptake of specialist services. It is therefore, of the utmost importance that services reach out to these communities to learn about how to efficiently structure their services to remove all biases, rather than enforce Western schools of thought and principles on their patients.
Research has also indicated that in addition to cultural biases within mental health services, clinician bias may also play a role. Studies have shown, for example, that there are differences in incidence rates when diagnoses are made by ethnically matched or blinded raters (Fearon et al, 2006). Desai (2006) also reported that nine inquiry reports into murder inquiries involving black people with mental health problems revealed that certain stereotypes and misconceived biases about black people’s lives were incorporated deeply into professional practices such as risk assessment and care planning. Netto (2006) similarly found that counseling services frequently failed to take into account the heterogeneity of ethnic minority communities and relied heavily on stereotypes.
Services must therefore be sensitive to these issues and ensure that clinicians are sufficiently trained and equipped with a comprehensive knowledge of the population that they serve to ensure that these cultural biases do not implicitly or explicitly operate. The West London Mental Health Group (WLMHT), for example, adopted a whole-systems approach to improve BME groups’ experiences of mental health services. As it was based in West London where 42% of the population is part of an ethnic group other than British, the project conducted numerous focus groups with service users from BME groups and liaised closely with local community organisations to ensure a high level of understanding and removal of all cultural biases among its practitioners, clinicians and overall services (Black and Minority Ethnic Positive Practice Guide, 2009). Similar projects should be enforced nationwide in order to fully remove cultural and clinician bias that hinders the access and experience of BME communities to specialist mental health services.
Lack of awareness and training
In addition to the presence of cultural biases, a major criticism of mental health services is their focus towards meeting the needs of the ethnic majority population, whilst their provision for ethnic minorities demonstrates a severe lack of cultural awareness. This is particularly visible for South Asian communities. For example, Hatton et al (1997a) found that only a third of South Asian carers make use of short-term break care in service provision, as the service is often only available for a set time period of either one or two weeks which does not allow longer trips to visit family abroad, intrinsic to South Asian culture. Moreover, lack of provision of appropriate food and drink, such as sufficient range of vegetarian food (Atkin & Ahmad, 2000) can also highlight the lack of cultural awareness and negatively affect the experiences of BME members. In the “Aap Ki Awaaz” survey of 125 members of the Pakistani community in Birmingham, women advocated that they “…need a separate centre for Muslim women as they can’t participate openly when there are unknown men around” (Rethink, 2007). It is evident that services need to be more culturally informed in order to provide a better level of service. Projects such as the EPIC project have further highlighted that Eastern concepts of mental health are different to those in the West and thus, focus should be on improving pathways of care of service users of ethnic minority origins by taking into account their beliefs systems (Belliapa, 1991).
There is an urgent need for projects that ensure cultural competence (CC) of staff so that they may deliberate culturally appropriate care and therefore, optimise recovery. The training of mental health practitioners is a key component so that misperceptions of healthcare professionals can be deduced and then can be effectively corrected. There is also an urgent need to establish a database of “good practice” (Oommen et al., 2009) so that services will be able to follow strict guidelines on how services should be structured.
Another problem within mental health services is the failure to take into account differences in cultural beliefs about mental illness in ethnic minorities. There is evidence, for example, that amongst some BME families, there is less knowledge and understanding of the causes of mental health. For example, in India, research has indicated that the culture frequently alludes to the fact that there is “no such thing as mental retardation” (Miles, 1995). Instead, individuals attribute mental illness to supernatural beliefs that can have profound social and psychological consequences for them and their families. Given the strong emphasis on family, this impact could include feelings of inadequacy experienced by parents of individuals with disabilities who are seen as having failed to ensure the welfare of the child (Hussain et al., 2002). Jorm et al (2009) for example, found that Indian respondents were generally willing to be a friend, neighbour or workmate of people with mental disorders, but did not deem marriage into the family acceptable. Women with mental health problems are particularly vulnerable to stigma in these communities, and their exclusion from marriage and child rearing often results in their social obscurity and annulment of femininity. These women face a “triple jeopardy” in relation to race, disability and gender (Mir et al., 2001). It is these cultural factors specific to BME communities that should be taking into account in service provision.
If services fail to account for these cultural beliefs and ideas, and in this case, for example, the vulnerability of women with mental illness, ethnic minorities can be left feeling increasingly isolated and alone in their difficulties, and most significantly, may be more likely to ignore their problems and fail to get help. For example, in a survey of the Pakistani community, women reported that the “staff is not well guided or aware about community’s own needs and priorities, culturally and religiously” (Rethink, 2007).
The importance of language becomes essential in relation to the culturally specific beliefs in the BME community. Chamba et al (1998) for example, found that patients often received information on mental health in English even when it was not the preferred language. Hatton et al (2003) also found that South Asians were given a later diagnosis and disclosure mostly in English despite this rarely being their preferred language. A report by Edge (2011) similarly reported that a sample of 42 Caribbean women revealed that they saw health professionals as insensitive and had difficulties in confiding with only white professionals. The women advocated that they would be much more comfortable having support and care in mixed ethnic groups and that there was a dire need for greater cultural sensitivity among staff. Mind, a charity for mental health in Croydon, also found that people form BME groups were less likely to access preventative community services such as counseling than their white peers (Mind, 2011).
In order to improve the experiences of BME members, it is necessary to ensure that language appropriate services are made available. Mental health problems are so laden with stigma and discrimination that inappropriate language services can even compound the problems. Services must make sure they have sufficient interpretation and translation services in place and also actively solicit therapists who can speak additional languages and are themselves from BME communities. In the BME Communities and Mental Well-Being project that focused on BME communities in Kensington, Chelsea and Westminster, for example, the most significant feelings among individuals of BME communities was a deep-seated feeling of staff insensitivity at language difficulties. Individuals felt that professionally trained interpreters and/or allocation of sufficient time for patients to understand their diagnoses and care plans was critical in changing their experiences of these services (Caught between Stigma, 2005).
Lack of funding
Another visible problem that has affected users from BME communities’ experience of mental health services is a lack of funding. In the last five years, three out of four BME centered organisations has faced financial issues (Soteri, 2002) as only 2% of all funding is reserved for the work of BME led organisations (McLeod et al., 2011). Moreover, according to the figures from the BME Housing Associations, the total current income of General Charities is approximately 15.6 billion pounds but BME organisations receive only 10% of the 15.6 billion resources. This severe paucity of funding frequently leaves smaller organisations struggling to remain afloat, particularly due to their reliance on short-term grant income. A severe lack of funding can impact the likelihood of BME organisations obtaining community care contracts (Yee and Mussenden, 2000) and ultimately, the sustainability of the organisations (Bowes et al., 2000). There is no doubt that the position of BME organisations then becomes considerably more precarious than any other groups. It is therefore, imperative that number of changes must be made to the entire structure of funding to ensure that BME-centered charities and organisations receive adequate funding. It is only if the funding increases that BME organisations can focus on the delivery of culturally appropriate services, translators and an overall better service, instead of wondering how long they will be sustainable and ignoring the needs of BME communities.
Having reviewed the key research in the area of the experiences of BME communities in mental health services, the methodology for this study will now be outlined.
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