BLACK MUSLIM FORUM

On February 9^th 2021, an urgent inquiry investigating alleged systemic racism within NHS maternity care services was launched with the support of Sandra Igwe, co-chair and founder of the Motherhood Group and UK charity, Birthrights (Summers, 2021); an investigation, a long-awaited investigation given women of colour have endured decades of drastically disproportionate health outcomes. Though true it may be that the NHS was created in 1948 with a white British population in mind (Rani, 2021 – Dr Karen Joash at 06:25), it unfortunately no longer serves the needs of those it intends to provide healthcare to, while increasingly disregarding one of the essential values of its establishment: a service that helps everyone.

In a recent study commissioned by a parliamentary committee, 64% of black British individuals who were interviewed stated that they did not believe that their health to be as protected by the NHS compared to white people’s (Campbell, 2020). While 47% of black men shared the view that the NHS cares for their health to a substandard degree compared to white peers, the study found that this view was shared by almost 4 in 5 (78%) of black women (Ibid). These statistics are stark, considering that the NHS is England’s largest employer of Black, Asian and other minority ethnic individuals (Ibid; Kline, 2015), and yet, individuals from these communities still feel that the NHS does not value their lives equally.

Though the last year has brought to light the extent to which BAME communities’ health in general has been neglected, with both the re-emergence of the Black Lives Matter Movement and the COVID-19 pandemic highlighting the impacts of structural racism on the Black communities’ mental and physical wellbeing, there is still grave need for more substantial and effective action to be taken to improve BAME communities’ access to, and experience of, healthcare services. The systemic racism that exists within our national healthcare service is an area of concern which the NHS has tried to address through various avenues such as the Workforce Race Equality Standard (established in 2015 to improve race equality in the NHS) and more recently, NHS Race and Health Observatory (established in 2020 ‘to identify and tackle the specific health challenges facing people from BAME background’).  It is an issue that requires more attention and time than can be afforded in this paper, which offers for consideration only one of the many symptoms of chronic racism (Manley, 2020). This paper will therefore focus on the inaccessibility and inadequacies of maternal healthcare services for black British women, with the aim of gleaning the wider implications for the persistence of great disparities in the UK’s healthcare services. In doing so, it also fundamentally sets out to understand what more can be done to ensure black women experience a higher standard of healthcare overall.

A recent multi-site and longitudinal investigation by American Academy of Paediatrics on ‘The Family and Community Health’ highlights how racial discrimination drastically leads to the deterioration in all aspects of an individual’s quality of life (Simons et al. 1996-2023). This extensive 25-year-long research project, following more than 800 black American families, has, thus far, universally found that individuals who had reported experiencing high levels of racial discrimination when they were young teenagers have grown up experiencing significantly higher levels of depression in their 20s than those who did not share in this experience. The impact of this heightened level of depression has been examined through blood samples which have revealed an accelerated ageing on a cellular level, particularly amongst young people who were found to be older at a cellular level than expected, based on their chronological age. Racial discrimination accounts for much of this discrepancy as researcher Sierra Carter expressed how ‘the experience of constant and accumulating stress due to racism throughout an individual’s lifetime can wear and tear down the body – literally “getting under the skin” to affect health’ (Carter, 2020).  

This chronic racial discrimination which Carter describes as “getting under the skin” and affecting black communities’ health is attributable to several factors. Researchers on health inequalities continuously indicate social discrepancies in education, finance, access to appropriate and efficient healthcare, and the resulting associated socioeconomic disadvantages, as being at the centre of mental and physical health inequities (Ferraro et al., 2016; Fong et al., 2019). Classified as a ‘stress pandemic’ for black communities who are already disproportionately affected due to such factors as poverty, high unemployment rates, and lack of access to sufficient healthcare (Williams, 2020), COVID-19 had not only posed an extra challenge to a thus extremely marginalised community, but it has also brought to light the extent to which the BAME community’s physical and mental wellbeing has been neglected, with a study of 18 million people revealing that black people are twice more likely than white people to contract COVID-19 (Mundasad, 2020).

When examining the effects of the pandemic on black women’s reproductive health, the trend appears to continue. It is estimated that thus far 55% of pregnant women admitted to hospital with coronavirus in the UK were from BAME backgrounds (Topping, 2020)  while it is forecasted that black pregnant women are eight times more likely to be admitted into hospital for COVID-19 (White, 2020). Unfortunately, such statistics are not limited to the extraordinary times of the pandemic. For decades Black British women living in the UK have been reported as experiencing poor prognosis, poor treatment and greater risk of morbidity from preventable and treatable health conditions such as heart disease, diabetes, and cervical cancer compared to their white British counterparts (DeSantis et al., 2006; Calabrese et al., 2015).

Within the field of maternal healthcare, emerging reports such as the Ockenden review of maternity services at Shrewsbury and Telford Hospital NHS Trust (Ockenden, 2020) outline the underlying themes of neglect towards women’s health. The report explores the endemic issues surrounding both physical/practical care for women’s maternal health (e.g. lack of risk assessments, poor competency in the management of ‘complex’ cases) as well as the psychological impact of poor-quality healthcare services (e.g. lack of compassion and kindness, traumatic births, poor bereavement care). Unsurprisingly, black women are by in large the recipients of such inadequate healthcare services. The 2018 MBRRACE report on maternal care in the UK found that black women were five times more likely than white women to die as a result of complications in their pregnancies (MBRRACE-UK, 2018). This includes black women experiencing a higher risk of miscarriage (both through IVF and spontaneous conception) for full-term pregnancies, while stillbirth remains twice likely to occur. Moreover, black mothers living with disabilities face even greater risks of complications during pregnancy (White, 2020).

According to the MBBRACE report conducted between 2014 and 2016, 2,301,628 children were born of which 225 women died from either direct or indirect causes of pregnancy or childbirth within the first year of their baby’s life. The main two direct causes of death were medical in nature, the first being blood clots in the circulatory system (thrombosis) which, in some cases, then develop to clog other vessels such as the brain or lungs (thromboembolism), and the second cause being haemorrhages. Following these two causes of death, suicide was the third most common cause of maternal death. Between 2014 and 2016, 16 women committed suicide within the first year of their baby’s life, raising serious questions about the mental health support available for new mothers in wider society in general.

The report also considers the indirect causes and coincidental causes, with the main indirect cause of death recorded as cardiac disease (highly prevalent amongst African-Caribbean and Asian communities, see Chaturvedi, 2009) and the main coincidental cause recorded as cancer. Frighteningly, the report highlights that women’s cancer symptoms were commonly mistaken as pregnancy-related issues, such as mastitis (inflammation of breast tissue), and as a result they did not always receive appropriate or timely attention. Equally worrying, is the finding that during the period of 2014 – 2016, 10 women were murdered within the first six weeks after giving birth and a total of 14 were murdered in during their baby’s first year of life by their partners. The report suggests that such death could have (in part) been prevented by establishing a post-natal continuity of care (e.g. frequent midwife visits) and an ongoing care plan which, it is important to note, black women are less likely to receive (White, 2020).

The table below highlights the ethnicity of women who died:

Ethnicity	Number of women who died from direct causes of pregnancy and childbirth (out of 98)	Number of women who died from indirect causes of pregnancy and childbirth (out of 127)	Total (out of 225)
White European	63 (= 64%)	83 (= 65%)	146 (= 65%)
Indian	3 (= 3%)	7 (= 6%)	10 (= 4%)
Pakistani	6 (= 6%)	8 (= 6%)	14 (= 6%)
Bangladeshi	1 (=1%)	2 (= 2%)	3 (= 1%)
Other Asian	4 (= 4%)	0 (= 0%)	4 (= 2%)
Black Caribbean	6 (= 6% )	2 (= 2%)	8 (= 4%)
Black African	6 (= 6%)	17 (= 13%)	23 (= 10%)
Others/Mixed	5 (= 5%)	6 (= 5%)	11 (= 5%)
Missing	4 (= 4%)	2 (= 2%)	6 (= 3%)

The table below highlights where the women who died were born:

Women’s region of birth	Number of women who died from direct causes of pregnancy and childbirth (out of 98)	Number of women who died from indirect causes of pregnancy and childbirth (out of 127)	Total (out of 225)
UK	59 (= 60%)	83 (= 65%)	142 (= 63%)
Eastern Europe	7 (= 7%)	2 (= 2%)	9 (= 4%)
Western Europe	1 (= 1%)	1 (= 1%)	2 (= 1%)
Asia	9 (= 9%)	9 (= 7%)	18 (= 8%)
Africa	4 (= 4%)	17 (= 13%)	21 (= 9%)
Australia and North America	0 (= 0%)	1 (= 0%)	1 (= 0%)
Central and South America and Caribbean	5 (= 5%)	1 (= 1%)	6 (= 3%)
Missing	13 (= 13%)	13 (= 10%)	26 (= 12%)

The tables above (sourced from McKenzie, 2019) display the current trends in BAME women’s maternal deaths. In table 1, 10% of women who died identified as Black African which, on first glance does not appear to be a large proportion, however, when we take into account the fact that Black African individuals make up just under 2% of the population of England and Wales (NOMIS, 2011), these rates are extremely high and disproportionate given the small percentage of Black African women residing in the UK. The fact that the statistics convey maternal death rates to be higher amongst BAME women than their white peers clearly points to a systemic issue within the British national healthcare system that is rooted in one important factor: race, and racism. The questions that we should therefore be asking are: who or what is responsible for such high death rates amongst BAME women? How does structural racism manifest within healthcare services? And how do we tackle it?

Racial myths

There are certain racial and racist ‘myths’ surrounding black women’s reproductive systems, which have posed serious obstacles to black women receiving the medical attention they require. One of the most common, damaging ‘myths’ is the belief that physiological differences in black women’s bodies make birth more difficult or ‘complicated’ (McKenzie, 2019). For example, there is the common misconception that black and Asian women have ‘abnormal’ birth canal sizes, compared to white women, thus making childbirth more difficult or painful (Tennenhouse, 2018). Positioning white women as the ‘normative line’ from which black women deviate is a recurring theme also within the field of reproductive health that consequently leads to some conditions being classified as typically ‘white’ or ‘black’ issues. For example, the condition of endometriosis, a disorder in which tissue similar to tissue in the lining of the uterus grows outside uterine cavity, on the ovaries, bowel, and pelvis lining is one such illness that has traditionally been considered a ‘white woman’s disease.’ The result is severe misdiagnosis and delays in appropriate and timely treatment for black women who suffer from this condition (Haye, 2020). On the flip side, conditions such as fibroids, which is three times more likely to occur in black women than white women (Ibid), have come to be classified as a ‘black woman’s disease,’ the suggestion being that black women are more genetically predisposed to the condition, thus reducing the likelihood of environmental factors such as poverty, diet, or history of abuse being taken into account.

Other racialised myths include the damaging stereotypes that black women are ‘loud’ and that they naturally possess a higher pain threshold, leading to black women’s voicing of pain and discomfort oftentimes being underplayed or perceived as disingenuous.  This is based on this stereotype, which, once again, does not accept black women’s experience as their own, but rather, places black women’s pain in relation to white women (i.e. black women are ‘stronger’ than white women when it comes to pain tolerance), black women are less likely to receive pain-relief medication during childbirth (Bell, 2019).  Not only is it tremendously dangerous for the physical wellbeing of a woman to have their first person experience of pain denied, but it is also psychologically damaging to measure BAME women’s unique experiences against a narrow and unrepresentative statistic of white women. As Whitehead (2019) aptly states, ‘the shaming narratives of NHS maternity services are built on women failing to measure up to this peculiar mannequin, rather than acknowledging its own systematic failure in understanding and caring for human variation.’ Indeed, even if there existed (which there currently does not) robust scientific data to suggest that certain pregnancy-related issues were inherently physiological for certain ethnic group, the question remains, are these diversities being taken into consideration and are BAME women receiving appropriate care for their conditions?

Although the upholding of ‘the’ average-female model in medical terms affects women of all race and ethnicities, BAME women are affected to a greater extent than white, British born women as their bodies differ from what has been established as the norm in western medical descriptions (Whitehead, 2019). The key problem, therefore with such racial myths is that they fundamentally reinforce racism. Racial stereotypes about women’s body, what they can or cannot do, what they should or should not do, can condition health professionals to perceive black women in a certain way, and in doing so, such clinical bias influences the way they interact with and, ultimately care for, black women.

Mistrust in Health Professionals

As racial myths about black people manifest through the treatment and care (or lack of) which black individuals receive in healthcare services, a relationship of mistrust and suspicion forges between BAME communities and health professionals. When black women’s lived experiences are challenged as questionable and their concerns are dismissed, this increases the likelihood that they will not access healthcare services in the future because they do not feel safe or comfortable to do so.  Self-advocacy is therefore made extremely difficult for black women who are essentially being told that they are not the experts of their own body and experiences. Inevitably, this establishes a negative feedback loop in which lived experiences of poor health services further reinforces the distrust that black women may feel towards health professionals. In a survey carried out by Black Ballad, a resonating sentiment of being ‘handled […] as a child or an inmate at a prison’ reverberated amongst respondents when discussing their treatment during pregnancy (White, 2020). This approach of providing healthcare which is not person-centred and is disempowering for the patient’s autonomy can lead to ‘stereotype threat’ (Haye, 2020): a situation in which people either are or feel themselves to be at risk of conforming to stereotypes about a particular social group, further hindering interactions between the patient and medical professionals.

Indeed, researchers have found that black women accessing health services and support often alter their pattern of service use or acknowledgment of proposed advice based on their perception of how health professionals view people from of their ethnic group (Nyashanu & Serrant, 2016; Prather et al., 2016). For example, if a black woman accessing a healthcare service feels that health professionals have embarrassed them, they are less likely to engage with the same or similar services in the future. This in turn has a knock-on-effect on the judgements the black community then makes about themselves as individuals (Ibid; Serrant-Green, 2004). This is particularly pressing for black women’s self-esteem when taken into consideration how black women are positioned in western society (see my previous article, Black Women’s Bodies in Italy: an exercise of power and pleasure for Italian Patriarchy) as hypersexual and sexually promiscuous. We need then question how such disparaging portrayals of black women, coupled with the absence of depictions of black motherhood and pregnancy by brands and mainstream media conditions not only the way black women feel about themselves and their sexuality, but also their experiences of accessing health services. Moreover, as Whitehead (2019) fittingly states, these narratives, taught through mainstream media ‘that feed cultural bias and the perceived supremacy of the white body are difficult to dispute when the medical/institutional protocols support it.’

While enduring racial myths and deep-seated mistrust in health professionals are two of the main, direct barriers that hinder black women from receiving adequate gynaecological care, it is also important to acknowledge the wider, indirect barriers of poverty, social deprivation and racial discrimination that has resulted in BAME communities experiencing severe structural disadvantages and resultant low self-esteem. Moreover, the impact of these indirect barriers is that reproductive health issues may not assume a high priority in their lives while they continue to face other more seemingly imminent issues such as poverty.

What can be done?

The very first change that can be implemented to close in on the health inequality gap is to involve black women in tailoring reproductive health services and support that are more culturally appropriate models of service provision. To achieve this, there needs to be established an on-going programme of service development which involves black women in the development, delivery, and evaluation processes to ensure implementation of services is effective. There is evidently, also an urgent need for diversity training amongst health professionals, particularly for those who may hold unconscious biases. Such efforts have already been made through campaigns such as the “five steps for healthcare professionals,” set up by the Royal College of Obstetricians and Gynaecologists (RCOG) and FIVEXMORE to eradicate maternal health disparities in the UK. The five step include actions which healthcare professionals can adopt to change attitudes and reduce inequalities in healthcare services:

Coupled with this attitude shift, there is also need of practical training in which health professional gain a good understanding of communities’ needs, the barriers they face in accessing health services, as well as stereotypes and misconceptions about their communities. Part of such a training should not be textbook based, but rather, a live interaction with black women themselves. This could help to reduce fear of discrimination with the knowledge that the health professionals have been equipped with the tools required to understanding their particular experience and point of view.  

Additionally within the field of research, there needs to be a better framework through which investigations can be carried out to understand why black women remain at a significant disadvantage with regard to their reproductive health. British nurse and academic, Laura Serrant, has commented on the fact that ‘UK researchers to date have often struggled to find a “culturally safe” methodological framework to help explore the challenged faced by black women and their families in safeguarding their health, particularly around sensitive issues such as sexual and reproductive health’ (2020). By “culturally safe,” Serrant refers to approaches which ‘centralise black women’s experiences in the spaces where identities, culture, health and expectation intersect and which the women themselves report as being appropriate and inclusive of their needs’ (ibid).

In the words of Dr Karen Joash, Consultant Obstetrician and Gynaecologist, and spokesperson for race equality as Royal College of Obstetricians and Gynaecologists it is vital we remember that:

                ‘when we are looking at mortality [rates], we are looking at the tip of the iceberg […] what about the near misses, all the people that don’t get the correct healthcare that they are suppose to get, but somehow survive? They are therefore scarred by that psychologically, they, themselves, their families, they don’t trust the healthcare system or the services, what about those people? We don’t even have the analysis of those people at present, we don’t have a search into the near-misses.’

Dr Karen Joash

The statistics we currently have, though useful in helping to frame conversations and inform the actions required in improving the NHS services is only a snapshot of the bigger picture. It does not take into consideration the so-called ‘near misses,’ the lived experiences of individuals who have sometimes endured more harm in the process of seeking treatment from the NHS.  The humanistic lens which will be applied for inquiry into the systemic racism within the NHS’s maternity care is therefore one of the first steps that will hopefully enable us to understand how racial injustice across the spectrum – from explicit racism to unconscious bias – is resulting in poorer health outcomes for ethnic minorities. While this paper focused on maternal care experiences of black women accessing care, this is not just about maternity care, but rather it captures the shared experiences of many individuals from black, Asian and other ethnic minorities who have accessed NHS services in general. With this acknowledgment in mind, the fight for better, more equal maternal healthcare services for black (and brown) women is not just a fight for women, or for people of colour, it is a fight for cultural competency across the board if we are to have a national health service which truly caters for the population it claims to serve.

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Black British Women’s Experience of Maternal Healthcare Services: Why Black British Women Are Still Five Times More Likely To Die In Childbirth

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