Unequal impact? Coronavirus and BAME people Contents

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2Health inequality

The virus is still here. There is still this risk. We need to continue socially distancing. We need to make sure that messaging comes in the culturally appropriate manner.14

9.The coronavirus pandemic is first and foremost a public health crisis. This chapter considers the health factors that have exacerbated the impact of the coronavirus pandemic for BAME people, including the role played by comorbidities, health inequalities, and other wider determinants of health. At the end of the chapter, we set out recommendations, including on mitigating the disproportionate impact through an early prevention of comorbidities, culturally competent guidance, and tackling existing health inequalities. We also consider ethnicity data in the context of the pandemic and outline recommendations for improving it.

Disproportionate impact

10.The evidence we have heard is clear that in some cases, compared to their White counterparts, BAME people experience the virus more severely and with more adverse health outcomes, including death.15 We have heard that even between BAME groups there is a disproportionate impact; there are different outcomes for Black Caribbeans and Black Africans, and Bangladeshis have different outcomes compared to Indians and Pakistanis.16 The ONS found that when compared to White groups and after adjusting for region, population density, socio-demographic and household characteristics, the raised risk of death involving coronavirus for people of the Black ethnic groups was 2.0 times greater for males and 1.4 times greater for females compared to those of a White ethnic background.17

11.It has been difficult to determine what makes some BAME people contract and experience coronavirus at disproportionate rates to their White counterparts. Research interest considered the possibility of ethnic differences in the expression of angiotensin converting enzyme 2 (the host receptor for the virus).18 However, the interaction between ethnicity, angiotensin converting enzyme 2 and the clinical outcome of coronavirus remains uncertain.19 Research interest has also considered other causes that may make some BAME people more susceptible to contracting the virus, experiencing it more severely and having adverse outcomes: an increased risk of admission for acute respiratory tract infections, an increased prevalence of Vitamin D deficiency, vaccination policies in their country of birth, increased inflammatory burden, and higher prevalence of cardiovascular risk factors.20 Not all of these are biological, some of these are cultural, socioeconomic or relate to lifestyle and diet.

12.We asked Parliamentary Under Secretary for Health, Jo Churchill MP, about the driving factors for the disproportionate impact on BAME people. She told us that “we really do not know enough to say which one of these factors is the overriding factor. There is still a lot of research needed”.21

Role of comorbidities

13.Comorbidities increase the likelihood of people experiencing the virus more severely and with adverse health outcomes. We were told by Professor Kamlesh Khunti, Professor of Primary Care, Diabetes and Vascular Medicine at the University of Leicester, that people with cardiometabolic comorbidities, such as cardiovascular disease, diabetes, and hypotension are more likely to be affected.22 He explained that, to a lesser extent, people with chronic kidney disease and lung diseases such as asthma or chronic bronchitis, can also experience symptoms of coronavirus more severely.23 Obesity is another risk factor in experiencing coronavirus severely because of the metabolic disturbances, as noted in the British Medical Journal by Stephen O’Rahilly, director of the Metabolic Diseases Unit at the University of Cambridge.24

14.Professor Khunti said that these risk factors were disproportionately higher in people of some BAME backgrounds.25 The prevalence of hypertension is considerably higher amongst Black African and Caribbean groups than in the White population, and hypertension’s associated risk of cardiovascular disease may be accentuated in South Asian groups.26 Asian and Black ethnic groups develop diabetes at a younger age compared to White individuals.27 Some BAME people are susceptible to obesity-related diseases, like type 2 diabetes, at a lower weight status compared to White populations.28

15.The Government has taken steps to address some of the comorbidity risk factors. For example, it launched an obesity strategy on 27 July, Tackling obesity: empowering adults and children to live healthier lives, which seeks to encourage people to move towards a healthy weight so that if an overweight person contracts coronavirus their chance of severely experiencing the symptoms decreases.29 As part of this obesity strategy, the Government said it is expanding the NHS Diabetes Prevention Programme.30 This programme specifically targets BAME people.31

16.On 17 August, the Government announced that Public Health England (PHE) would be disbanded.32 It is to be replaced with a new institute that would deal primarily with the UK’s response to pandemics.33 Writing in the British Medical Journal, public health specialists Paul C Coleman, Joht Singh Chandan, and Fatai Ogunlayi have raised “serious concerns” about this move, noting they are:

particularly concerned about the crippling effect this restructure will have on the future health and wellbeing of this nation, and the ability of our public health system […] Critically, we also demand immediate clarity on the government’s future plans for the vital health improvement work undertaken by PHE […].34

17.The health improvement work by PHE includes tackling comorbidities, such as through the obesity strategy, and publishing crucial guidance around coronavirus. The obesity strategy is a key player in the Government’s measures to fight coronavirus; communications about the obesity strategy have emphasised losing weight to reduce the risk of worse outcomes from coronavirus.35

18.On tackling comorbidities, Professor Khunti told us that “primary prevention is key”.36 He explained that “we need to ensure that people from BAME backgrounds are assessed regularly for any of these risk factors that are mentioned. We have an NHS health check, which is for people aged 40 to 74, but for the BAME backgrounds, because they get these conditions earlier, we should extend that to age 25 and onwards”.37 By tackling comorbidities, an individual’s risk of contracting coronavirus and experiencing it more severely with adverse outcomes is decreased.38

19.Comorbidities pose a risk for BAME people to experience coronavirus more severely and, at times, with adverse health outcomes. To tackle comorbidities, primary prevention should be prioritised. We are concerned that the decision to disband Public Health England could result in a gap in the prevention work that is already underway. We recommend that the NHS Health Check, which is currently for 40 to 70-year olds, should be extended to people from a BAME background from the age of 25 years for at least the next two years. We also recommend that the Government’s obesity strategy is culturally appropriate. The Government must ensure that any work undertaken in this area is not lost when Public Health England is disbanded.

Health inequality

20.In 2010, Professor Michael Marmot, Professor of Epidemiology at University College London, published Fair Society, Healthy Lives, the Marmot review, which was commissioned by the then Secretary of State for Health.39 It focused on the link between health and social status, and stated that by tackling social inequalities improvements could be made to health inequalities. The Health Foundation commissioned Professor Marmot to undertake a 10 year review, which was published on 25 February 2020.40 The report found that ethnicity intersects with socioeconomic status to produce poorer outcomes for some ethnic groups; however, the report found that better data was needed. The review found that life expectancy had stalled in England since 2010; where it referred to ethnic differences in life expectancy it pointed to the lack of uniformity by ethnic group.41

21.In the Marmot Review 10 years on, there were numerous recommendations for taking action on health inequality. A key recommendation was to develop a national strategy for action on the social determinants of health with the aim of reducing health inequalities so that the Government’s work on “levelling up” can be completed.42 This recommendation was also suggested to us by the Royal College of Nursing, which stipulated that the Government must “invest in a cross-governmental strategy to tackle health inequalities which sets out clear objectives, measurable recommendations and timeframes with the funding required to achieve them”.43 Other recommendations from the Marmot Review 10 years on included: early intervention to prevent health inequalities; and, to develop whole systems monitoring and strengthening accountability for health inequalities.44 A summary of recommendations in The Marmot Review 10 years on can be found in the appendix to this report.

22.We heard evidence from Professor Marmot as part of the Unequal impact: Coronavirus (COVID-19) and the impact on people with protected characteristics inquiry. He explained that the “10 Years On report gave a framework of understanding of the causes of health inequalities and overall health of the population”.45 Professor Marmot told us that he was “terribly concerned” that the pandemic would entrench existing health inequalities.46 The recommendations from Professor Marmot’s report were focused on reducing health inequality, and it has become increasingly apparent as the pandemic has developed that the impact of coronavirus for BAME people is exacerbated by pre-existing health inequalities. Professor Marmot told us that as lockdown is eased and society emerges into the recovery from the pandemic, he expected that “[his] report will indeed become part of the discussion about what kind of society we want to create”.47

23.Stakeholders have contacted us to express their frustration that there have been a number of existing reviews concerning health, as well as racial inequality, and that often the recommendations had been side-lined.48 The Health Foundation told us that “while covid-19 has shone a spotlight on racial and ethnic inequalities in health, these issues are not new. They are long-standing and deep-rooted, with a number of previous reviews and consultations making recommendations that have not all been heeded”.49 Dr Zubaida Haque, the then Interim Director of the Runnymede Trust, asked, “why are they sitting on the shelf and why are we not implementing those recommendations?”.50

24.Many reviews and reports have put forward recommendations to tackle health inequalities. Now is the time for action and the Government should finally act on these recommendations. The Government should prioritise implementing the entirety of the recommendations in the ‘Marmot Review 10 years on’, so that health inequalities are not further entrenched by the pandemic.

Guidance

25.Since the beginning of the pandemic, the GOV.UK website has provided guidance on what coronavirus is, protecting oneself and others from contracting the virus, and on self-isolating.51 The Government has continued to update the guidance as and when new information has come to light. The website has also been updated to reflect changes in the Government’s measures to control the virus.52 The guidance is important as it sets out how to prevent contraction and transmission of infection. By 7 April, the GOV.UK website had an information leaflet on coronavirus translated into different languages including Urdu, Arabic and Polish. However, on 14 May this guidance was withdrawn.53 On 13 July, the GOV.UK website uploaded updated translated versions of the guidance on coronavirus.54

26.The evidence we have heard is clear that some BAME people have experienced significant difficulties in accessing the Government guidance and information on coronavirus and prevention strategies. Some have told us that this is because English is not some people’s first language. Naz Zaman, Chief Officer of the Lancashire BME network, told us “if English is not your first language, you are more vulnerable than most because you are not accessing the mainstream messages”.55 This is supported by the evidence we received from researchers at Leeds Trinity University, who conducted a survey of 56 different families over the first seven weeks of the lockdown. They found that “for parents who had limited or no English language skills, government guidance with regards to covid-19 and the lockdown was not clear or well understood. Advice was often sought from friends and families instead”.56 The language barrier was also highlighted to us by Migrant Voice.57

27.To access information about coronavirus, Guy’s and St Thomas’ Charity, an urban health foundation based in London, told us that some BAME people were relying on information from “social media or information from their native countries contributing to a lack of clarity about current UK guidance”.58 Moreover, the Henna Asian Women’s Group, a BAME women user-led group, explained that there was an increased dependency on their services in order to understand public health messaging:

Henna has had an increase in the number of users who are severely anxious and lacking understanding of what the current health pandemic means, and the effects it can have if specific measures are not met. Henna is under extreme pressure to provide help and support to many BAME vulnerable users.59

Cultural competence

28.Concerns have been raised since the beginning of the pandemic that the “communication so far has not been targeted or designed for different communities” and that “communications and information should be informed by cultural knowledge [and] evidence and should be disseminated in a manner which encourages trust”.60 In our first oral evidence session, Naz Zaman explained that:

It is not about making cartoons and dubbing them in community languages. My mum is not going to listen to a cartoon dubbed in a community language. It is not about just putting letters out there […] Many people will be the same as me. It is about using the right mediums. If you have access to specialisms and specialist knowledge, use that. It is not being utilised.61

29.Where information was available, witnesses have told us that it was insufficient; it was simply guidance written in English translated to other languages with a limited understanding of the nuances. Professor Khunti explained that:

there are some words that are not available and not used in certain languages. For example, there is not a word in Gujarati, Hindi, Punjabi or Urdu that you can use for “virus”. You need to work with the community groups and focus groups to make sure they are specifically directed at that language that they are working in.62

This is supported by the evidence we received from the UK Nepal Friendship Society, who informed us that there was “minimal reliable detailed technical information in the Nepali language on the virus, types of support that [individuals] were entitled to, or how to successfully access that support.”63

30.The PHE report, Beyond the data: Understanding the impact of COVID-19 on BAME communities, published in June 2020, had two recommendations (five and six) that focused on culturally competent guidance:

(5) Fund, develop and implement culturally competent COVID-19 education and prevention campaigns, working in partnership with local BAME and faith communities to reinforce individual and household risk reduction strategies; rebuild trust with and uptake of routine clinical services; reinforce messages on early identification, testing and diagnosis; and prepare communities to take full advantage of interventions including contact tracing, antibody testing and ultimately vaccine availability.

(6) Accelerate efforts to target culturally competent health promotion and disease prevention programmes for non-communicable diseases promoting healthy weight, physical activity, smoking cessation, mental wellbeing and effective management of chronic conditions including diabetes, hypertension and asthma.64

Cascading guidance

31.An additional complication in accessing guidance for BAME people during the pandemic is the way that Government guidance has been cascaded. Barbara Palmer, a nurse, who shared her lived experience of the pandemic with us, explained that BAME individuals are often reliant on their community networks to understand information. However, due to the lockdown and social distancing measures, community networks have been affected; as such, in some cases, BAME people have not been able to access the support of their community networks in the usual way.65 Researchers at the London School of Economics’ Covid and Care Research Group suggested to us that the Government increase its consultation with cultural and faith-based community support groups so that it is able to address specific needs of BAME communities and build trust.66

32.Naz Zaman told us that it is vital to use a range of channels to access BAME communities and “not necessarily the same old community leaders channels”.67 She expressed concerns that “males in many communities are still the gatekeepers of knowledge”, and hence, alongside the usual channels, alternative avenues should be pursued so that BAME women have the necessary information to make informed decisions.68

33.We questioned the Parliamentary Under-Secretary of State for Health, Jo Churchill MP, on 15 July, about the barriers to accessing guidance. She told us that guidance was available in “a multiplicity of languages” and “translation on telephone calls, to explain what self-isolation is, is now available as well, in order that we can better communicate how to keep everyone safe”.69 The Minister also stated that the Government was working with faith leaders and influencers, especially in Leicester, which was undergoing a local lockdown at the time of the evidence session, “to make sure that we use all avenues or channels of communication properly, in order that people can get to services”.70 The updated translated guidance was published on the Government website on 13 July. However, despite the importance of accessibility, the documents themselves consisted of blocks of text densely packed together limiting readability with very few images. Some of the Government’s graphics, such as hands, face, space are translated.71

34.On 22 October, the Government published the Quarterly Report on Progress to Address Covid-19 Health Inequalities, this captured the follow-up work that the Minister for Equalities had been conducting since the publication of the PHE reviews. The report noted that:

One immediate priority is to work with local communities to improve the reach of official public health guidance, rules and other messaging or communications about the virus into specific places and groups most at risk from COVID-19.72

Therefore, in the report, the Government announced the Community Champions scheme, which:

includes up to £25m in funding to local authorities and the voluntary and community sector to improve the reach of official public health guidance, and other messaging or communications about the virus into specific places and groups most at risk from COVID-19.73

35.It is vital that Government guidance is accessible to everyone so that individuals can stay informed and prevent contraction or transmission of the disease. To ensure that Government guidance is accessible for BAME communities, the Government must ensure its guidance is culturally competent. We recommend that by the end of Summer 2021, the Government implements the entirety of recommendations five and six from the Public Health England report: Beyond the data: Understanding the impact of covid-19 on BAME groups.

36.We believe that current guidance is inadequately catering to the needs of BAME people and the publication of translated guidance has been slow and often less accessible than English-language versions. The Government should update the guidance on the virus itself, how it transmits, and prevention strategies, in a clear, accessible and culturally competent way.

37.We welcome the Government’s Community Champions scheme; it is a step in the right direction. In order to ensure the scheme’s success, we urge the Government to liaise with BAME women and representatives of BAME women to encourage them to become Community Champions so that the scheme can successfully reach those who are marginalised.

Data

Death rates

38.On 7 May, the ONS published data that counted deaths, where coronavirus was mentioned on the death certificate, by ethnic group.74 The ONS used a unique linked dataset that encompassed Census 2011 records and death registrations with England and Wales coverage. Professor Khunti raised a concern that because the last Census was completed in 2011 some of the data that was being used to measure the impact of coronavirus on BAME groups was outdated.75 We were told that estimating BAME populations can be challenging as annual population estimates produced by the ONS do not currently include ethnic group and so it is necessary to use the Census 2011 to provide the reference population for estimates of rates.76 At the same time, since death certificates do not currently include ethnic group information (an issue we will examine in further detail later in this section), this had to be identified from another source. The ONS used data from the 2011 Census to identify the ethnic group of those who died from the pandemic and estimate differences in rates of coronavirus deaths in different groups. Such linkage is an important way to identify ethnic group disparities for data sources which do not routinely include ethnic groups, but in this case the ONS could only do so using the 2011 Census.

39.Data on coronavirus death rates from the ONS shows significant differences between ethnic groups. For example, in its fully adjusted model, Black males and females are 1.9 times more likely to die from covid-19 than the White ethnic group.77 Males of Bangladeshi and Pakistani ethnicity are 1.8 times more likely to die of covid-19 than the White ethnic group; for females, this is reduced to 1.6 times more likely. Individuals from the Chinese and Mixed ethnic group have similar risks to those with White ethnicity.78

40.Professor Platt told us that there is often discussion about the BAME population as if it is homogenous group. There are, however, large degrees of heterogeneity between ethnic groups; indeed, the factors that apply to some groups do not necessarily apply to others. For example, some BAME groups can be affected by the housing conditions that they live in but not by the employment they are in. Other BAME groups are more impacted by the exposure from a public-facing job but not by housing conditions.79 The Muslim Council of Britain has called for disaggregated data to be collected “to better understand the impact on different communities to tailor public health approaches in order to prevent the unnecessary loss of life”.80 In mid-April, PHE announced it would start reporting coronavirus cases and deaths in hospitals by ethnicity.81 As the pandemic progressed, there was growing recognition of the need to disaggregate the data collected.

Recording ethnicity on death certificates

41.Ethnicity is not currently collected at death registration.82 A key issue arose at the beginning of the pandemic: as ethnicity data was not recorded on death certificates, this meant that the disproportionate mortality rate could not be confirmed for non-hospital deaths. This also meant that the public health messaging that the pandemic was a ‘great leveller’ and that everyone was equally affected was not changed to reflect the more nuanced and accurate picture as quickly as it could have been. It has been argued that if ethnicity was recorded on death certificates then the disproportionate impact would have been more evident sooner and public health messaging could have reflected the disparity.83

42.Academics at University College London have suggested that ethnicity should be recorded on death certificates “to establish a complete picture of the impact on those from black, Asian and minority ethnic backgrounds”.84 Evidence to our inquiry also suggests that ethnicity should be recorded on death certificates. For example, the Muslim Council of Britain believes that recording ethnicity “helps to learn more about health differences between different groups”.85 This is supported by NHS Providers, who told us that recording ethnicity on death certificates “is the key to understanding and addressing the interaction between health and racial inequality”.86

43.The Minister for Equalities told us that “our data is not clear on ethnicity. As far as numbers of deaths go, I cannot give you clear sight on the actual breakdown on those deaths or on the tests, but that data is now being collected.”87 However, this data was not being collected by recording ethnicity on death certificates. We asked the Minister about this and she said she was considering this as a part of her review, and that “it is not clear exactly why that data is not being collected”. She continued that “it would definitely feed into exactly what is happening”, and that the Race Disparity Unit was looking at whether the data could be collected in the future. The Minister also said, “I am not sure it is going to be collected in time for the immediate dealing with Covid, unfortunately, but it would have been helpful”.88

44.Since 2012, Scotland has gathered data on ethnicity from informants of a death as part of the registration process; although, this is done on a voluntary basis and not mandated in statute.89 Ethnicity is not recorded on the death certificate itself.90 In 2019, 96.3% of deaths in Scotland had an ethnicity recorded (55,932 of 58,108 total deaths).91 This has made it possible to track most of the deaths for ethnic groups, and to some extent possible to assess the impacts of the coronavirus pandemic on different ethnic groups.92

45.On 22 October, the Government published the Quarterly Report on Progress to Address Covid-19 Health Inequalities, this captured the follow-up work that the Minister for Equalities had been conducting since the publication of the PHE reviews.93 The recommendations of this report have been accepted by the Prime Minister. Recommendation nine of this report was:

The recording of ethnicity as part of the death certification process should become mandatory, as this is the only way of establishing a complete picture of the impact of the virus on ethnic minorities. This would involve making ethnicity a mandatory question for healthcare professionals to ask of patients, and transferring that ethnicity data to a new, digitised Medical Certificate Cause of Death which can then inform ONS mortality statistics.94

46.Concerns about the ethics of recording ethnicity at death have been raised because ethnicity is often self-reported, but at death obviously cannot be.95 These concerns could be mitigated if England and Wales were to adopt the Scottish approach to recording ethnicity at the death registration process; ethnicity is reported by the ‘informant’.96 This could create some measurement differences as an individual might not identify with the same ethnic group as what the informant identifies them with. However, it would be expected that this approach would work in the main.

47.We welcome this step by the Government to record ethnicity on death certificates. However, we are disappointed that this has taken the Government so long. We agree with the Minister that the data would have been helpful, and we do not understand why collecting this data was delayed. This data will be valuable in assessing the impact of coronavirus on BAME people and will also add value to understanding wider health disparities. We urge the Government to ensure that the ethnicity data collected is disaggregated. We also recommend it is reported on a regular basis and in disaggregated form. In implementing this policy, we urge the Government to consider allowing the informant of a death to report the ethnicity of a deceased individual.

Data collection and reporting

48.Dr Chaand Nagpaul, Chair of the British Medical Association (BMA), told us that the impacts on BAME people cannot be considered simply by tracking death rates; instead, in his words, the “full picture” needs to be considered.97 This includes the share of BAME people tested for coronavirus, how many tested positive, and how many were admitted to hospital as a result of contracting the disease. This also includes the wider context of how the individual was exposed to, and contracted, the disease; Professor Khunti said data regarding the individual’s occupation should also be collected.98

49.We heard evidence about some of the challenges around collecting ethnicity data. We were told that when collecting data quickly and in a disaggregated way, it is still necessary to maintain confidentiality.99 We were also told that there needs to be greater transparency with what ethnicity data the Government collects routinely.100 Professor Khunti explained that the UK has some of the best datasets however the data are not held centrally in one place, and so this limits the effectiveness of the data.101 The Ethnicity Facts and Figures website102 was created with the aim “to provide high-quality data in a single resource”, as our predecessor Committee’s report, Race Disparity Audit, explained.103 This website could provide a single site for coronavirus-related ethnicity data.

50.The Minister of Equalities, Kemi Badenoch MP, told us that “[data collection] is not something that you do in a week or even a month. It is years of changing things, maybe even looking at census data, all sorts of various organisations”.104 She said:

at the moment, given that the priority is looking at interventions to stop the spread of this disease, the collection of data is a longer-term piece of work. It is not something we are going to deploy resources to when we need that to be fighting Covid.105

We asked the Minister for Equalities about her Department’s duty in collecting data. She told us that “a lot of data collection is voluntary […]. We try as much as possible to get a full picture of what we are doing”.106 We also asked the Minister for Equalities what data the Government was collecting to assess the impacts of coronavirus on ethnic minorities. She wrote to us after the oral evidence session and said that:

The team leading this work (the Race Disparity Unit) is focusing on building on the analysis undertaken by Public Health England which, in looking at the impact of COVID-19 on ethnic minority groups, controlled for age, sex, deprivation and region. I have asked RDU, working with health experts, to explore the availability of data on a series of likely risk factors including occupation, comorbidities, disability, housing conditions, household size/structure, and air quality. RDU has a longer list of potential risk factors, but health experts suggest that these should be the priorities to explore.107

51.We understand that data sharing is voluntary. However, we believe it is the Government’s responsibility to build trust among BAME communities so that they are comfortable in volunteering data. We strongly disagree with the Minister’s approach and the resistance to deploy resources for data collection; this does not show a sustained effort to capture “a full picture”. The Government should collect, and report, disaggregated data on clinical outcomes, for instance, the share of BAME people being tested, how many have tested positive and the share of BAME people being admitted to hospital. We believe that this is essential in assessing the impact of coronavirus on BAME people; any data collected should be disaggregated by ethnic group to allow for a much more granular analysis of the problems. This data collection should begin immediately.

52.We recommend that the Race Disparity Unit extend the Ethnicity Facts and Figures website to include a section on the BAME impacts of coronavirus specifically reporting the disaggregated share of BAME people being tested; the disaggregated share of BAME people infected and the disaggregated share of BAME deaths from the virus. The Government must ensure that this data is disaggregated by ethnicity to allow for a much more granular analysis of the situation.