When the ambulance came to take her father to the hospital, Abi* was scared – not just because he was going to the hospital during a pandemic, which meant she couldn’t accompany him, but because she feared he might be treated differently because of his skin colour.
“There was a fear about my dad being there alone but I think an added fear because you’re thinking, number one, he’s of a certain age, number two, he’s a black man – so you’re thinking, how much really are they going to prioritise [him]?” says Abi. “A lot of systems that are put in place in this country are geared up to prioritise white people,” she says.
Abi lives near the London borough of Brent – an area which has been particularly hard hit by the pandemic, experiencing the highest Covid-19 death rate in England between March and June. She was staying with her parents in the same area in mid-March when her father first started feeling unwell.
“It happened very quickly,” says Abi. “My dad went into hospital on a Thursday night and by Sunday morning he had slipped away,” she says. “It was just really surreal.”
Abi describes herself as black British of African heritage. After her father passed away, she started to become aware of a worrying trend in Covid-19 cases and deaths in the UK. “I remember so many news reports talking about [the fact] that people from ethnic minorities, and a lot more black people have been affected by this,” she says.
Since then, multiple studies have confirmed that people from black, Asian and minority ethnic (BAME) backgrounds in the UK are disproportionately getting infected and dying from Covid-19. A Public Health England report in June found that the highest coronavirus diagnosis rates were among black people and that people from black and Asian ethnic groups were twice as likely to die from Covid-19 compared to white people. But few studies have managed to pin down the root causes of this disparity. And digging deeper threatens to reveal uncomfortable truths about inequality in the UK.
Read more: After the surge, the psychological impact of Covid-19 is hitting home
Michelle* was in pain and had difficulty breathing, but she was reluctant to call 111 or 999. “I’ve never called those numbers before in my life,” she says.
Michelle, whose father is black and mother is white English, did eventually called 999 and was taken to hospital to be seen by a doctor, who told her she was probably recovering from Covid-19 but didn’t need to be admitted. She was relieved and recovered after several days but hasn’t felt the same since.
“I still feel really ill now but the illness has changed form,” she says. Michelle developed more symptoms a few weeks after her suspected Covid-19, which she thinks may have been related. Despite trying to get medical advice she didn’t always feel like she was being taken seriously during subsequent visits to her GP.
One of the only doctors that was compassionate with her was a “dark-skinned” woman, who gave her more time than any other doctor she’d been seen by. “You kind of think this is too obvious,” she says. “I feel like the reason was, because they must have seen me more as a human than the other [doctors] did.”
Systemic racism is difficult to account for in scientific studies but there is lots of evidence that it plays a role in health. The long-awaited review from Public Health England said that racism and discrimination experienced by BAME communities is a “root cause affecting health,” and that “for many BAME groups, lack of trust of NHS services and healthcare treatment resulted in their reluctance to seek care on a timely basis, and late presentation with disease,” which could increase the risk of severe outcomes.
Across all age groups, BAME people in the UK tend to report poorer general health compared to white people. Naveed Sattar, physician and professor of cardiovascular and medical sciences at the University of Glasgow, says that the same social, economic and environmental factors that underlie poorer overall health within BAME communities are responsible for their greater risk from Covid-19.
Sattar says a key factor contributing to increased risk in BAME communities is deprivation. “We’ve got wealth inequalities, which leads to health inequalities,” he says. Deprived areas, such as Brent, Newham and Hackney in London, are being hit harder by the pandemic and this significantly affects BAME people who are disproportionately likely to live in deprived parts of the country. Hackney had the third-highest death rate from Covid-19 in England between March and June, after Brent and Newham, and has a large non-white population of just over 40 per cent. It is also the eleventh most-deprived local authority district in England.
“I do live in a borough which has been heavily affected by Covid-19,” says Michelle, who lives in Hackney. She says she is grateful to be furloughed, because her on-going symptoms would have affected her ability to do her job as a technician at an art gallery. “It’s a very physical job, like up a ladder, painting and things like that,” she says. “If I had to work, it would be very difficult.”
Nishi Chaturvedi, professor of clinical epidemiology at University College London, says that the impact of deprivation on Covid-19 risk has been overlooked. “It’s not that there’s a small pocket of individuals who are deprived who are at excess risk, but it’s a graded increase in risk with increasing deprivation, so this is affecting all of us,” says Chaturvedi.
Data from the Office for National Statistics for the years 2016 to 2018 suggests people born in the most deprived areas of England can expect about 19 fewer years of good health overall compared to those in the least deprived areas. This trend is reflected in the data that has emerged from the pandemic, which suggests people living in the most deprived parts of England and Wales are dying from Covid-19 at twice the rate of people living in the least deprived parts of these nations.
To make matters worse, lower-income households are also being hit harder by the economic downturn caused by the pandemic. A report from the Resolution Foundation think tank found that lower income households are 50 per cent more likely to be saving less than usual as a result of the coronavirus crisis. “The pandemic is affecting not just the health of the population but the wealth of the population too,” says Chaturvedi. “And it discriminates.”
“Even I can see that it’s about wealth, it’s about accessibility,” says Michelle who recently changed to a GP practice in a wealthier neighbourhood, because she believes the service there is better than in the area where she lives.
“Obviously not all GPs are identical,” says Chaturvedi. “But I couldn’t say all the good GPs are in affluent areas and all the not-so-good ones are in poor areas. It doesn’t work like that.” Instead, Chaturvedi thinks other factors, such as overcrowding, occupation and lack of public space may be contributing to the increased risk from Covid-19 in deprived areas and particularly among BAME communities.
At the end of July, more than a month after Public Health England’s first report on disparities in the risks and outcomes of Covid-19, the government announced that £4.3 million worth of research funding would go towards six new research projects seeking to “explain and mitigate the disproportionate death rate from Covid-19 among people from BAME backgrounds.”
But many of the contributing factors highlighted by Chaturvedi and other researchers are things that we already knew existed before the pandemic, such as racism and deprivation. “[These] inequalities are terribly important and must be addressed,” says Chaturvedi. Tackling these wider societal issues won’t be easy, as it will require thinking that goes way beyond health, but the pandemic is revealing just how necessary this is.
Sara* is of Pakistani descent and works as a hospital pharmacist in the NHS. In the early stages of the pandemic there was a lot of confusion at her work, with guidance from the government changing on a regular basis and often impractical to implement. She and her colleagues were “going above and beyond” to meet the growing demand in the hospital, she says. “I became an intensive care pharmacist, when my role that I applied for wasn’t necessarily meant to be in intensive care.”
Early on in the outbreak, Sara says a lot of her colleagues started to become concerned about the risk of going home to their families after work in the hospital. “Some of the conversations I had with [colleagues] at that time were really quite distressing,” she says. In the absence of clear guidance from the government, Sara did her best to help her colleagues to find temporary accommodation, but thinks more could have been done to support staff members earlier on in the pandemic, particularly those from BAME backgrounds.
“Like having support groups for some of the staff members that are more affected, so a lot of the Asian nurses – there were a few losses that we had within our trust,” says Sara. “Trying to find more of that community to give them support and translators and things like that to try and help them,” she says.
Twenty-one per cent of NHS staff in England are from a BAME background, but a report by the Health Service Journal in April found BAME individuals made up 63 per cent of healthcare workers reported in the media to have died from Covid-19. This may be related to the types of jobs that a lot of BAME people occupy within the NHS, many of which are particularly public-facing, suggests a review by Public Health England – 20 per cent of nurses in England are from BAME backgrounds, for instance. “They’re already at risk just because of the jobs that they do,” says Sara.
Official data on the ethnicity of NHS staff suggests that black people in particular are under-represented among consultants relative to their share of the UK’s working-age population. The lack of BAME representation among senior positions in the NHS may also be contributing to unconscious bias in the delivery of care, says Sara. “If there’s unconscious bias in hiring people, then why would that be any different to treating someone?” she says.
Sara additionally had concerns that the risk assessments being used within the NHS were over-simplified and failed to fully account for the risks experienced by BAME staff. The risk assessment that was being used in her hospital at the time she spoke to WIRED in July only flagged BAME background as a risk factor for people aged 55 and over, before providing general guidance on how affected staff could mitigate their risk. But there is evidence younger people from BAME backgrounds may also be at increased risk from Covid-19.
In some ethnic minority groups, diabetes, high blood pressure and heart disease emerge several years earlier than they do in the white European population, says Chaturvedi. “So, it could well be that younger ethnic minority groups are also at greater risk.”
Chaturvedi says other intersections, such as ethnicity and gender, have also been overlooked in the discussion about risk among different ethnic groups. A number of studies suggest women are at lower risk from Covid-19 compared to men. But this may not be true for black women, who have a higher incidence of diabetes and are much more likely to work in the health and care sectors, says Chaturvedi.
In early July, Sattar said that new risk scores were being developed for the NHS, which would have more subgroups for ethnicity. “As we get more sophisticated data that will be broken down,” he said.
People from BAME backgrounds are not only over-represented within the NHS workforce but are also more likely to work in other public facing jobs, such as in transport and social care, which may explain why they are disproportionately getting infected, says Chaturvedi. Of the 44 London transport workers who died of Covid-19 as of late July, 31 of them were from BAME backgrounds, according to data supplied to London Assembly member Caroline Russell.
Abi says a lot of people living in Brent, the area where her father spent most of his time, are key workers. As of 2018, 14 per cent of employed people in Brent were working in elementary occupations, including many public-facing roles such as cleaning or delivering goods, compared to less than 8.5 per cent in London as a whole. “A lot of them aren’t in a position to just be at home, because they’ll lose their jobs. I think that played a big part in it,” says Abi. “A lot of people were exposed. You know, they were out there.”
At the time her father was ill, Abi says her own employer hadn’t said anything about people being allowed to work from home. “For the most part people were still going to work,” she says. The government’s messaging at the time, which was before the UK went into lockdown on March 23, was that people with symptoms of coronavirus should stay at home. On March 16, the government updated the guidance to ask people to work from home “where they possibly can.”
Since then, data from the Office for National Statistics infection survey in England revealed that, unsurprisingly, people who work outside of their home are at higher risk of testing positive for Covid-19 compared to people working from home.
In the midst of a coronavirus outbreak in Leicester, which started in June, evidence emerged that conditions in factories in the city, primarily producing for Boohoo, may have put workers at risk of Covid-19. According to a spokesperson from Labour Behind the Label, a non-profit organisation campaigning for garment workers’ rights, the majority of workers in Leicester’s garment factories are from ethnic minority backgrounds.
Unfortunately for many BAME people, work is not the only place where they may face a higher risk of being exposed to the coronavirus. People from BAME backgrounds are more likely to live in crowded conditions, further increasing their risk of catching the virus, says Sattar. In July, preliminary research emerged suggesting other environmental factors, such as living in neighbourhoods that are more exposed to air pollution, may also contribute to an increased risk from respiratory diseases, including Covid-19, in some BAME groups.
Many people from BAME backgrounds are dealing with multiple inequalities at once, which when combined leave them particularly exposed to coronavirus and vulnerable to severe disease. “You’ve got this toxic combination of greater exposure and greater vulnerability leading to increased risk,” says Nishi Chaturvedi, professor of clinical epidemiology at University College London.
“This isn’t a new phenomenon,” she says. “If we look back to the H1N1 pandemic of about ten years ago – the flu epidemic in 2009 – we saw exactly the same kind of patterns that people of ethnic minority groups suffered worse.” One study at the time found that people of non-white ethnicity in England had almost twice the risk of dying compared to white people.
Chaturvedi says the key factors underlying the disparities we’re seeing now aren’t new either. It’s still racism, deprivation and environmental factors, such as occupation and living environment, she says. But none of these factors have been fully accounted for in studies of ethnicity and Covid-19 risk – something that isn’t lost on those doing the research. In May, the Office for National Statistics said that its report, which found that black people are almost twice as likely to die with coronavirus compared to white people in England and Wales, didn’t account for social or economic factors, or environmental factors such as occupation.
In not accounting for these factors, these studies may be failing to incorporate the real, lived experiences of many people from BAME communities across the UK. “There’s so many different elements to this, systemic, you know, structural racism,” says Abi. She never connected her father’s symptoms with Covid-19, because the government’s health messaging at the time emphasised other symptoms like fever and coughing, which he didn’t have.
“Covid-19 is a very new disease, so we’re just beginning to understand it,” says Chaturvedi. Chaturvedi says there’s evidence from studies of heart disease that people from different ethnic backgrounds can sometimes present with slightly different sets of symptoms or report symptoms differently despite having the same underlying condition.
This could lead to inadvertent discrimination by healthcare professionals, who may have more experience recognising symptoms in the way they commonly present within white people, who make up the majority of the UK’s population. “If you’re not trained to recognise a different set of symptoms or a different way of expressing those symptoms, you’ll miss that,” says Chaturvedi.
“It’s a structural problem because we’re not in certain spaces,” says Abi. “The structures are not set up with us in mind, so when things happen it’s like we’re omitted or we’re not thought about,” she says.
Although he was past retirement age, Abi says her father was very healthy and active, and used to go into Brent regularly to meet friends and get his hair cut. But he had started losing his appetite, and during a period of five days he began eating less and became weak. “We were in contact with his doctors and they were like okay it’s fine,” says Abi.
But her father’s condition continued to deteriorate. Eventually he was so unwell that Abi and her mother decided to call 111. An ambulance was sent to their home, and after paramedics determined that her father’s oxygen levels were low, he was taken to hospital. The next time Abi saw her father, a few days later, he had already passed away.
“The stuff about losing your taste only came out months later, so him not having an appetite – we didn’t connect it with [Covid-19],” says Abi. Since March, the NHS has updated its list of coronavirus symptoms to include “a loss or change to your sense of smell or taste.”
Chaturvedi says it isn’t yet clear whether Covid-19 symptoms are experienced differently among people from different ethnic backgrounds, but this phenomenon has been described in other diseases such as heart disease, which is linked to poor outcomes in Covid-19.
Abi was disappointed that the government delayed releasing its first report about ethnicity and Covid-19 risk, which was eventually published on June 2. “It’s like, this information is going to help people,” she says. “Even if a small percentage of people from [BAME] communities do not die, based on this information that is now out there, then we saved some human lives,” she says. “That’s invaluable.”
“If there is a silver lining in any of this pandemic, it will be to realise we need a fairer society across race and deprivation to help allow better lifestyles and improved living,” says Sattar. “But this may be too much to ask for.”
Abi says that shortly after her father passed away, her family gave consent for his hospital samples to be used for research at Imperial College London. She hopes that the knowledge gained from studying her father’s samples will be able to help someone else in the future.
*Names have been changed
This article was originally published by WIRED UK
