1. The 2011 census put a spotlight on the growing diversity of England and Wales’ population. Amongst the 56 million residents in England and Wales, 86% were White, 8% were Asian/Asian British and 3% were Black/African/Caribbean/Black British. Of this Asian and Black population, about 13% (7.5 million) living in England and Wales were born outside of the UK. Forty-six percent of the population born overseas identified as Asian/Asian British (33%) and Black/African/Caribbean/Black British (13%,) (ONS, 2015).
2. 95% of black Africans arrived in the UK after 1981 (ONS, 2015).
3. Black and minority ethnic groups are more likely to be concentrated in London and the Midlands (GOV.UK, 2011).
4. Of the population that were born overseas, 48% identified as Christian, 19% as Muslim and 14% cited not having a religion (ONS, 2015).
1. Background
The WHO defines mental health as,
“a state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community” (World Health Organisation (WHO), 2014).
1.1 UK prevalence and burden of mental health disorders
The burden of mental health disorders has increasingly been a topic of focus in developed countries and is estimated to account for more than 14% of disease burden (Murray and Lopez, 1996). In the UK, mental health disorders are responsible for the largest burden of disease, 28% of the total burden, compared to 16% each for cancer and heart disease (Ferrari et al., 2013). In a recent UK nationwide survey, it was estimated that at least 1 in 2 people in England will experience depression at some stage in their life.
Anxiety and depressive conditions, alcohol dependence, drug dependence and psychosis were estimated as affecting 17%, 6%, 3% and 1% respectively (McManus et al., 2009).
About half of all mental health illnesses are established by the age of 14 and this rises to 75% by age of 24. Data shows that 1 in 10 children that are aged between 5 and 16 years are diagnosed with mental health problems such as conduct disorder, anxiety disorder and depression at 6%, 3% and 2% respectively. Children living in poverty are more susceptible to mental illness, three times at higher risk compared to those from high income families (CentreForMentalHealth(forNHS), 2016).
The impact of mental illness on people’s life experiences is considerable, resulting in suffering, distress and disability. There is also considerable impact on health and social care as well as reduced production output estimated at adding £105.2 billion strain on the economy (Centre for Mental Health, 2009). In the UK, it is estimated that 70 million days are lost from work each year due to mental ill health (i.e. depression, anxiety and stress related conditions), making it the leading cause of sickness absence (Davies, 2014). There are close ties between physical and mental health. A report by The King’s Fund in 2012 stated that 30% of people with a long-term physical health problem also had a mental health problem and 46% of people with a mental health problem also had a long-term physical health problem (Naylor et al., 2012). The public, private and voluntary sectors in the UK continue to develop initiatives aimed at improving access and provision of mental health services and in particular focusing on adapting services to make them more effective and meet the varying needs of a diverse population. All these developments are reliant on accurate estimates of the incidence and prevalence of mental illness amongst different population groups (Rees et al., 2016).
It is recognised that grouping people together under broad ethnic categories can create difficulties as it conceals significant differences within the categories (Aspinall, 1998; Bhopal, 2002). It is difficult to get an accurate picture of mental illness prevalence amongst different minority ethnic groups due to the limited availability of population surveys examining this as well as the lack of focus on other mental illnesses besides psychotic disorders and individuals’ contact with healthcare services for these conditions. This is largely due to limited access to surveying sufficient numbers of ethnic minority participants (Sproston and Nazroo, 2002).
There has been relatively little research on mental illness in primary care and community settings given that most common mental disorders (CMDs) are often treated at this level. Lloyd (2009) suggests that rates of CMDs may be underestimated in cross-cultural research as some psychological symptoms which could be presented as somatic symptoms in some ethnic groups may be overlooked (Lloyd, 2009). Fewer people are therefore likely to present to primary care for CMDs (Lowenthal et al., 2012).
Whilst it is difficult to get accurate records of the prevalence of CMDs particularly amongst ethnic minorities, there has been some research which offers an insight, one of the most notable being the EMPIRIC study (Weich et al., 2004). The study found there was a relatively higher prevalence of anxiety amongst south Asian women (63.5%) compared to white women (28.5%).
Other factors that may also influence presentation in primary care and whether symptoms can be attributed and diagnosed as a CMD include language, age at migration, employment, sex and social position (Lloyd, 2009). For instance, in 2016/17, 64% of people referred for psychological therapies were women. Additionally, service level data in 2016/17 showed that people living in areas of deprivation were twice as likely to be referred for psychological therapies compared to those living in the least deprived areas, demonstrating that socio-economic status is a key factor of CMDs. People that are unemployed or economically inactive are significantly more likely to experience CMD compared to those that are employed (Baker, 2018). Austerity policies following the financial recession in 2008 for instance were deemed to heighten insecurity and uncertainty in people, particularly those unemployed or with lower incomes and in temporary accommodation. There is evidence that these contextual factors can adversely affect people’s mental and emotional wellbeing (NHS England, 2016).
Whilst there has been a lot of attention focused on mental health conditions and access to healthcare as mentioned above, data on the true prevalence of CMDs is patchy. For instance, the supposed increase of mental health problems amongst children and young people has been the subject of much debate. Service level data is often used as a proxy measure of incidence which is not a true reflection of prevalence. There is indication that children and young people in the UK have lower levels of emotional intelligence, however the recent political and media attention that mental health has received, may have led to an increase in referrals to services and better engagement therefore suggesting that incidence is on the increase (NHS England, 2016).
1.2 Raising the profile of mental ill health in the UK
Over the last decade or so, there has been a number of high-profile campaigns in an effort to raise awareness of mental illness, improve the public’s knowledge, challenge the stigma associated with it and encourage people to seek help early. One of the notable campaigns, Time to Change, focused on reducing public stigma and discrimination towards people with mental illness and there was some targeted work on black and minority ethnic communities (BAME). The campaign featured the personal stories of a number of celebrities that had experience of mental illness. An evaluation of the campaign showed a “step change” increase in positive attitudes in some key areas such as prejudice and exclusion (Evans-Lacko et al., 2014). Recently, a member of the British Royal Family gave a televised interview discussing his experience of mental ill health. Such activities have been a key motivation for the development of national strategies, policies and guidance on how improvements could be made to services to better meet the needs of local populations. It has also been a driver for increased investment by the government into mental health care.
1.3 The five year forward view for mental health – Taskforce strategy
“The NHS needs a far more proactive and preventative approach to reduce the long-term impact for people experiencing mental health problems and for their families, and to reduce costs for the NHS and emergency services” (CentreForMentalHealth(forNHS), 2016).
February 2016 saw the publication of the mental health taskforce five-year strategy. It set out the state of mental health service provision in England and the ambition to deliver major improvements for 1 million more people with mental health illnesses, to access high quality care (CentreForMentalHealth(forNHS), 2016). The strategy sets out 58 recommendations to work towards the government’s ambition to achieve parity of esteem between mental and physical illness, provide access to good quality mental health care and ensure people have a decent place to live, employment or good quality relationships in their local communities (CentreForMentalHealth(forNHS), 2016). The importance of reducing inequalities amongst people that are disproportionately affected by mental health illnesses such as those from BAME communities (see section 1.4 below for further discussion), people that live in poverty or are unemployed is strongly highlighted in the strategy. All recommendations in the strategy were accepted and the need for annual investments of £1 billion per year was identified to enable its delivery (CentreForMentalHealth(forNHS), 2016). Work has been underway to develop more responsive and accessible mental health services including improved access and reduced waiting times for psychological therapies and early intervention in psychosis.
1.4 Barriers, pathways and facilitators to accessing mental health services amongst BAME groups
Research studies as well as service level data have shown that individuals from White ethnic groups are more likely to seek mental healthcare services early compared to individuals from BAME communities. Studies also suggest that for instance levels of first contact with treatment services for psychotic illnesses are about three to five times higher in black Caribbean people compared to other ethnicities (Sproston and Nazroo, 2002). Evidence does also show that for example people of African descent have lower levels of engagement with mainstream health services and often access through adverse pathways and subsequently have poorer experiences and outcomes (Morgan, 2006). The characterisation of certain CMDs such as anxiety and depression as part of everyday life and so therefore not serious enough to seek help, unlike serious mental illnesses, may, for instance, have an impact on the number of black Africans presenting in primary or community care for these disorders. Socio-cultural factors such as social exclusion, racism, acculturation and differing descriptions of distress are often listed as the reason for the differences observed in rates of psychotic illness. These factors are however also associated with increased risk of common mental disorders (Lloyd, 2009).
It is important to understand the key barriers, facilitators and pathways that BAME groups experience in accessing mental health services to improve outcomes for this group. Research studies have highlighted the following themes outlined in the section below.
1.4.1 Barriers
As mentioned above, there are disparities in the access to mental health services and it is still unclear whether this variation is based on needs of BAME populations or the result of institutional, cultural and/or socioeconomic exclusion factors, which are known to disadvantage these groups (Mclean, Campbell and Cornish, 2003; Bhui et al., 2003). Some evidence indicates that hard to reach groups including BAME communities are less likely to obtain mental healthcare due to certain barriers. In the study carried out by Memon et al., (2016) looking specifically at the perceived barriers to accessing mental health services amongst BAME groups living in Brighton and Hove City, there were key themes that emerged which were classified broadly as personal and environmental factors, and relationship between service user and provider. Further examination into these categories highlighted the following factors as barriers:
- Symptom recognition – An inability for individuals to recognise and attribute their symptoms to mental illness which is also the case in other communities. There is also a lack of awareness of mental illness compounded by the cultural belief that mental illness should not be discussed openly particularly with family members.
- Stigma and cultural identity – Stigma towards mental illness within some communities made individuals reluctant to openly acknowledge their symptoms therefore, restricting access to services. Family members may also be reluctant to seek help on behalf of their loved one due to stigma of being associated with someone that has a mental illness. Cultural background and identity defined acceptable responses to mental health problems and appropriate coping mechanisms. Some communities perceive mental illness as everyday challenges and therefore individuals should be able to cope with these challenges.
- Social networks – For those with social networks, this is often the first point of contact for support and therefore providing an alternative to professional services. For people that do not have a broad social network, this is equally a barrier as there is no enabling support to help them access professional services.
- Waiting times – Lengthy waiting times for assessments and services were identified as having a negative impact on outcomes for individuals as their mental health illness was allowed to escalate in severity. Long waiting times is not only applicable to BAME communities but also other ethnicities.
- Language – As some people within the BAME community speak little to no English particularly recent immigrants, their inability to effectively communicate their needs to healthcare professionals prevented them accurately conveying their problems. As a consequence, individuals remain with their illness or might experience additional stress, not engage with healthcare services or receive unsuitable investigation and treatment.
- Finances – The financial costs of complementary medicine or therapies was seen as barrier to access due to most individuals being unable to afford these services. Informal community services are therefore used as a substitute to access some form of support.
Other barriers identified included recognition and response to needs by healthcare professionals, lack of understanding of the belief system of some cultures and individuals having a low awareness of services (Memon et al., 2016). The findings of this study are consistent with that of Weich et al., (2004), Tabassum et al., (2000) and Arthur et al., (2010) with a particular emphasis on barriers around language, communication and stigma.
1.4.2 Pathways
Pathways to mental healthcare services have been described as “the sequence of contacts with individuals and organisations prompted by the distressed person’s efforts, and those of his or her significant others, to seek help as well as the help that is supplied in response of these efforts” (Rogler and Cortes, 1993). The AESOP study noted that there was variation in the pathways and patterns of use of mental health services between ethnic minorities and White British populations (Morgan et al., 2005). Ethnic minorities were less likely to engage with their GP about mental health issues within a 12-month period for prescriptions of anti-depressants or referral for specialist services (Bhui et al., 2003). As previously mentioned, individuals from BAME communities often access services at the point of crises such as detention under the Mental Health Act or via the police/judicial system (Bhui et al., 2003; Fearon et al., 2005).
Studies into the pathways to mental health care rarely examined other forms of help seeking aside from contact with statutory services which provides a one-dimensional view. A study by Gater et al., (1991) carried out across 10 countries, suggests that traditional healers were often accessed for support by black Africans particularly in areas of low service provision, which led to delays in receiving formal treatment. The use of traditional healers’ services in African countries is presumed to be widespread (Ae-Ngibise et al., 2010). Kleinman’s (1980) model of health care systems as indicated in Figure 1 below takes a broad view of different help seeking avenues and people’s perceptions of illness. The model is proposed to depict the total healthcare system of any society. It considers help seeking through traditional practitioners and healers (Folk Sector) as well as mainstream healthcare services (Professional Sector). In this model, the Professional Sector adopt a bio-medical perspective while the Folk Sector functions using cultural and religious interventions to treat disease. The Popular Sector entails the general population and in particular family and friends of those that have an illness, who are a key part of the decision-making on where the individual should seek care from (Fenenga et al., 2016). Kleinman proposed that between 70% and 90% of illness is managed solely within the Popular Sector. Additionally, most decisions concerning when to seek help from the other sectors, whom to consult and whether to comply and evaluations of the efficacy of treatment are also made within this sector.
Further to Kleinman’s work on the model of healthcare system, he also developed the explanatory model of illness to enable physicians to identify specific illness characteristics which improves their understanding and the patient’s experience of care. The model aimed to respond to patients’ feedback of “dissatisfaction, inequity of access to care and spiralling costs” which Kleinman regarded as being unsolvable through traditional medical approaches. Kleinman defined illness as being flexible across cultures and individuals whilst disease has a fixed definition and diagnosis. This means that patients’ experience of a certain disease may be felt, described and understood in a different way, therefore causing patients with the same disease to classify themselves with a different illness (Kleinman, Eisenberg and Good, 1978). This is key in the way patients perceive and describe their mental illness as well as how and where they seek care and support as described in Kleinman’s model of healthcare systems.
Figure 1. Kleinman’s model of healthcare systems (source Fenenga et al., 2016)
1.4.3 Facilitators
Enabling factors that make it easier for individuals from BAME communities to access services is not as widely researched as that of barriers to accessing services. The main facilitators highlighted are social or family support and previous positive experiences of health services (Gulliver et al., 2010). Additionally, acknowledging the need for help has also been highlighted as being an important facilitator for access to mental healthcare services (Ayalon and Alvidrez, 2007). Social support is regarded as one of the social determinants of health in a general population. People that do not receive as much social support as others are more likely to suffer from poorer quality of life including depression (Grav et al., 2012).
Studies involving individuals from black African communities suggest that integrating African world views into treatments and collaborating with non-healthcare practitioners such as traditional and faith leaders may improve the use of services (Ae-Ngibise et al., 2010; Ruane, 2010). The WHO defines traditional medicine as “the sum total of the knowledge, skill, and practices based on the theories, beliefs, and experiences indigenous to different cultures, whether explicable or not, used in the maintenance of health as well as in the prevention, diagnosis, improvement or treatment of physical and mental illness.” (World Health Organisation (WHO), 2013). The WHO published its strategy on Traditional Medicine in 2013 to support member states in developing proactive policies and putting in place action plans that strengthens the role of traditional medicine in keeping populations healthy. The strategy draws attention to the existence of traditional and complementary medicine in almost all countries across the world and the importance of identifying safe means of integrating them into mainstream services (World Health Organisation (WHO), 2013).
1.5 Identification and pathways to care for CMDs
About 90% of depression and anxiety disorders are diagnosed and treated in primary care however most individuals do not seek treatment early and CMDs can go unrecognised for considerable lengths of time. Identification of anxiety disorders is particularly poor in primary care and small numbers receive treatment for it. The National Institute for Health and Care Excellence (NICE) published guidelines in 2011 focusing on primary care to drive improved access to services, identification and recognition of CMDs, provision of advice on treatment and referral and development of local care pathways (NICE, 2011). The guidelines were recently updated (May 2018) and it focuses on promoting and preventing premature mortality of BAME groups. It builds on the importance of providing services in accessible community-based settings such as a person’s home or other residential settings, community centres and social centres that are more appealing and culturally sensitive. It also stresses the importance of services needing to be visible and responsive to the local population (NICE, 2018).
1.6 Psychological therapies for CMDs
In England, access to psychological therapies for CMDs is usually via general practitioners (GPs) or self-referral. Local and national data indicate that psychological therapy services are not accessed at the level expected by people from different ethnicities relative to population levels. Black Africans for instance are amongst the groups of ethnicities with the lowest levels of usage (57.4%) of psychological therapies compared to their population in England. This could be compared to the rates of access to psychological therapies by black Caribbean minorities (rate of 121.4% compared to their population) who are often categorised with black Africans (Antony, 2015).