297.Everyone in the United Kingdom has been impacted by the covid-19 pandemic. Even if not one of the more than 7 million people who have contracted the virus, the restrictions that have been applied to contain the pandemic have applied to every citizen. But the experience of covid-19—in terms of its incidence and the impact of measures taken to combat it—has not been even. It has had an unequal impact on particular groups within our society.
298.In this Chapter we consider the disproportionate impact on two broad groups—people of Black, Asian and minority ethnic communities, and people with learning disabilities. Evidently, the focus on these two groups does not represent the breadth of the diverse experience of covid-19 in the UK population. The incidence and impact of covid and the policy response to it has varied between people in many different ways: such as between people of different ages, different genders, between people of different economic circumstances, and between the rural and urban populations, to name but a few.
299.Nevertheless, during the first phase of the pandemic much attention centred on the disproportionate impact of covid on people of different ethnicities, and also on the particular experience of people with learning disabilities. In highlighting them in this Chapter, we point to the need to understand that the impact of covid-19 has been diverse among different groups in society.
300.Early in the pandemic it became clear that people from some Black, Asian and minority ethnic backgrounds were being disproportionately impacted by covid-19, with severe illness and death being more likely than among the population as a whole. In May 2020, analysis by The Health Foundation found that after adjusting for age, people of Black ethnicity were four times more at risk of covid-19 related death than those of white ethnicity. The most recently updated figures show that, in England, the rate of covid-19 related deaths among men of Black African ethnic backgrounds was 3.7 times higher than among men of white ethnicity while the rate in women was 2.6 times greater. Among people of Bangladeshi, Black Caribbean or Pakistani ethnic background the rate of covid-19 related death was 3.0, 2.7, and 2.2 times greater, respectively, for men and 1.9, 1.9 and 2.0 times greater, respectively, for women.
301.There has been much discussion around the causes of these high rates of mortality. In particular, this has centred around whether it is attributable to a direct, higher susceptibility to severe covid-19 among Black, Asian and minority ethnic groups, or whether it is attributable to the differences in the social and economic conditions experienced by these communities compared to the population as a whole.
302.Certain pre-existing health conditions are known to be associated with poor outcomes for covid-19 including cardiovascular diseases, high blood pressure, obesity, diabetes, and kidney disease. Notably, among people from Black, Asian and minority ethnic communities, there are elevated rates of some of these comorbidities compared with the population as a whole. A May 2020 report from the Institute for Fiscal Studies summarised the health inequalities that “are likely to be relevant”. However, it is difficult to isolate these as a causal explanation, as we heard that these comorbidities were in turn associated with other factors, including socio-economic background and differing levels of access to and experience of health services. Professor Iain Bell told our inquiry that once socio-economic factors such as deprivation had been accounted for in their models, pre-existing health conditions “did not explain much”.
303.Similarly, in October 2020, the ethnicity sub-group of SAGE concluded with high confidence that genetic differences between ethnic groups “cannot explain the higher number of severe cases and deaths since ethnic minorities are very genetically diverse”. Written evidence submitted to our inquiry suggested that differences in covid-19 outcomes among different ethnic groups were instead more likely to reflect underlying social, structural and economic inequalities. It is clear that there has been a strong link between social deprivation and covid-19 mortality: ONS data covering the first wave of the pandemic between 1 March and 30 June 2020 showed that the most deprived areas of England suffered a covid-19 mortality rate that was more than double that of the least deprived areas. That health inequalities exist between socio-economic groups is not a new issue. For example, the research working group on inequalities in health, chaired by Sir Douglas Black found in 1980 that those in lower socio-economic groups suffered markedly higher rates of mortality. More recently, the 2010 Marmot Review concluded that “the lower a person’s social position, the worse his or her health”.
304.In particular, the higher incidence of covid among people of Black, Asian and minority ethnic communities may have resulted from higher exposure to the virus, rather than—or as well as—higher comorbidities. Our inquiry heard that people from some Black, Asian and minority ethnic backgrounds were more heavily represented in ‘frontline’ roles—including both health settings and other public facing roles such as retail and transport—than the population as a whole. During the covid-19 pandemic, those jobs that were not able to be performed from home carried a higher risk of contracting covid.
305.The Government’s SAGE ethnicity sub-group acknowledged that people working in these ‘frontline’ roles faced higher risk of possible exposure to covid-19 than those who had been able to work from home throughout the pandemic due to “a greater potential for viral contacts due to increased social mixing”. SAGE concluded that over-representation of minority ethnic groups in these at-risk occupations was likely to have increased their risk of exposure to covid-19. According to Professor Bell of the Office for National Statistics:
People from ethnic minority backgrounds are more likely in roles that are less likely to be able to home-work and are higher risk. Our analysis showed that one in five were working in higher-risk occupations, compared with 11% of the population.
306.Staff from Black, Asian and minority ethnic backgrounds are crucial to the NHS and care sectors, making up over one-fifth of the workforce and it is notable that the first ten NHS staff to die from covid-19 were from Black, Asian and minority ethnic backgrounds. There is some evidence that even within these frontline roles, ethnic minority staff were more exposed to covid-19 risk than their white colleagues. For example, the Health and Social Care Committee heard that in the first wave of the pandemic, frontline NHS staff from Black, Asian and minority ethnic backgrounds faced greater difficulty in accessing appropriate Personal Protective Equipment (PPE) that fitted correctly.
307.Professor Kevin Fenton, Regional Director of Public Health England London, who co-authored Public Health England’s August 2020 report, Disparities in the risk and outcomes of COVID-19, stated that adequate protection for staff was an area they were “very concerned” about in their review:
Many BAME workers felt less empowered, less able to speak up and less able to express their concerns about PPE risk or any vulnerabilities they might have. That may have placed them at risk […] staff felt less able to ask for PPE, or may have experienced what they felt was disproportionate distribution, utilisation or access to PPE as well.
308.Some people from Black, Asian and minority ethnic backgrounds have also been exposed to higher covid-19 risk due to their housing conditions. Figures released by the Office for National Statistics covering the first wave of the pandemic concluded that there was “some evidence” that suggested that “infection rates are lower for those living in households of fewer people”. Professor Bell from the Office for National Statistics stressed to us that people from Black, Asian and minority ethnic backgrounds were much more likely to live in multi-generational households with higher occupancy than their white counterparts:
From the English housing survey, for example, we know that if you take their definition of “overcrowded”- more than one person per bedroom- for the white population, 2% live in such accommodation; for Bangladeshis it is 24%; for Pakistanis, 18%; and for black Africans, 16%. We also know that those living in urban high-density areas are more at risk, as are those in more deprived areas.
309.In November 2020 SAGE confirmed the link between household size and increased transmission, finding that, even after controlling for deprivation and other factors, “there is increased risk of infection and mortality for those living in larger occupancy households”. In larger households, each individual will have a larger number of contacts while facing more difficulty engaging in transmission-reducing behaviour such as self-isolating or shielding. Age UK explained that, particularly for elderly people, living in larger, multi-generational households, it meant that individuals were more likely to be living with someone of working age who had to leave the house regularly, and so were at a higher risk of catching coronavirus.
310.The socio-economic factors discussed above have an important impact on the overall health and wellbeing of a person. The Government has identified ‘levelling up’ as a priority. This seeks to ensure “that no community is left behind, particularly as we recover from the COVID-19 pandemic”. Professor Kevin Fenton expressed to us that, in his view, tackling these issues would be “the most important” in determining different outcomes.
311.Additionally, written evidence we received was critical of the Government’s efforts to engage and communicate with people from minority ethnic groups. The Local Government Association wrote that the Government should focus on “improving messaging about health-seeking behaviour” to these communities. One of the important problems highlighted to us was that the large majority of the Government’s covid-19 public health messaging was delivered in English. Academics from the University of Surrey argued that this made the mistake of “failing to account for the large BAME population in the UK who may not have English as their first language”. In June 2020, a Public Health England Report, Beyond the data, raised concerns that the Government’s national messaging on health promoting behaviours such as isolating, testing and contact tracing, was not reaching the most vulnerable minority ethnic groups in our society. Professor Whitty acknowledged this:
I do not think we got our messaging right for some of the ethnic minority British groups early on and, indeed, some smaller groups. We did not have a clear campaign in those areas. That is something we need to look at fairly self-critically and work out how we can do it better the next time round.
312.However, locally based public health messaging was considered more successful in reaching out to and engaging with these communities. Professor Fenton, for example, pointed to local contact tracing efforts that produced positive outcomes “in part because it is closer to communities and able to engage communities in much more culturally competent ways”.
313.Importantly, the call for ‘cultural competence’ in national Government messaging and communications towards marginalised groups does not involve merely translating public health messages into a variety of languages. In July 2020, SPI-B recommended that culturally appropriate messaging should also be considerate of cultural and social norms, understand differences between different ethnic minority groups and be aware that minority ethnic communities may be less willing to trust health communication that comes from Government. Messages from leaders who already have established trust such as faith or community leaders are more likely to reach these communities.
314.The impact of the pandemic has also been disproportionately severe for individuals with learning disabilities, both in terms of their mortality rate due to the virus itself and the impact of non-pharmaceutical interventions such as lockdown and shielding. In November 2020, Public Health England concluded that the death rate from covid-19 among adults with learning disabilities was 3.6 times the rate of the population as a whole. Written evidence highlighted that these rates of death become even more disproportionate for younger adults with learning disabilities and Dan Scorer, Head of Policy at Mencap, told the Health and Social Care Committee that when adjusted for age the death rate for people with learning disabilities was “over six times” higher than the general population.
315.The reasons behind the disproportionate mortality risk faced by people with learning disabilities are multifaceted, but there was a high degree of consensus that existing inequalities, which pre-dated the pandemic, played an important role. Steve Scown, Chief Executive of the learning disabilities charity Dimensions UK, made clear that in their experience, pre-existing health conditions had increased the risk of mortality:
People with learning disabilities have a much shorter life expectancy than people without. That is a well-known fact. I think I am right in saying that it is at least a decade, so there is an inherent disparity to begin with. Also, people with learning disabilities often have underlying health conditions that make them more susceptible to Covid.
316.That people with learning disabilities have a lower life expectancy than the general population is well-documented by the annual Learning Disability Mortality Review (LeDeR) Programme. The 2019 LeDeR report showed that the average life expectancy for a male with learning disabilities was 61 years old, while for females it was 59 years old. This is compared to average life expectancy of 83 for males and 86 for females in the general population. The PHE analysis called attention in particular to the fact that people with learning disabilities already have higher death rates from respiratory infection than the population as a whole, as well as higher rates of diabetes and obesity, both of which are risk factors for covid-19.
317.People with learning disabilities therefore entered the pandemic from a position of heightened vulnerability. However, we have heard that these pre-existing risk factors were compounded by the fact that during the pandemic, people with learning disabilities were also more likely to struggle to access the healthcare that would normally be available to them. Steve Scown pointed to these difficulties accessing healthcare as a probable reason for their elevated risk of mortality due to covid-19:
Some of the difficulties they have had accessing the NHS during the last nine months have made treating their usual, normal illness-if I can use that phrase- much harder. We have had instances where people we support have not been admitted to hospital because they are not deemed poorly enough, whereas in the past they would have been. We have had difficulty getting GPs to visit. Often, the only way we have been able to access medical treatment is to dial 999.
318.Some of the guidance in place around hospital visiting during the pandemic has also had an impact on the quality of care that people with learning disabilities have experienced. In normal circumstances, people with learning disabilities who have to attend hospital can be accompanied by a family member or carer who is able to help them communicate with health staff if necessary. Yet due to infection control measures in hospitals, particularly at the beginning of the pandemic, some carers and advocates for people with learning disabilities were not allowed to attend hospital. Steve Scown told us that:
We have had 43 people admitted to hospital during Covid. On no occasion have families or staff been allowed to go with them. That has made their treatment much more difficult for our health colleagues.
319.It is important for people with learning disabilities, and especially those who may have trouble communicating or are entirely non-verbal, that they can be accompanied by family or a carer who is able to advocate on their behalf. We heard that not having access to this support during the pandemic could have a real impact on the quality of care that people with learning disabilities receive. Some people with learning disabilities rely on this support to ensure that health staff can understand their needs. For example, James O’Rourke explained that his brother Tony “would not be able to tell you where the pain is” without this support. This set up unnecessary barriers to effective treatment, which Dan Scorer told us was “a massive problem”.
320.While the impact of the virus itself on people with learning disabilities was disproportionately severe, so too was the impact of the non-pharmaceutical interventions that were introduced to mitigate its spread. We heard that the lockdowns, and in particular, the loss of social support that came with them, were extremely damaging to the wellbeing of some people with learning disabilities. Helen Spalding, who cared fulltime for her daughter Maja during the pandemic, described the serious impact that the loss of her usual support had on Maja’s mental health:
Maja would usually be at college five days a week. She goes to clubs and activities, run by various different organisations, Monday, Tuesday, Wednesday, Thursday and one Friday a month. On Saturdays, there are two activities […] and on Sundays she is very enthusiastic about the groups and the children’s work in the church. […] As soon as we went into lockdown, obviously the college closed. She was at home every day. All the clubs and activities stopped; everything stopped. For Maja, that was completely dreadful. It sent her into a tailspin.
Dan Scorer explained to the Health and Social Care Committee’s inquiry into the treatment of autistic people and individuals with learning disabilities that similar experiences were identified by Mencap across the entire sector:
From a survey of over 1,000 family carers that we did during the first lockdown, around 70% had experienced a reduction or cut to the social care support they and their loved one were getting. When we followed that up in November, 80% still had not had services reinstated.
321.For those people with learning disabilities who live independently in supported living, we heard that lockdown meant being completely shut off from the outside world, friends, and family. James O’Rourke, whose brother Tony lives in a supported living arrangement, described how difficult this was:
The second lockdown, for us as a family, was horrendous. I need to put in some context. Tony lives in a one-bedroomed flat, which he shares in a block with others. There are 12 flats. It is allegedly supported living, but the care provider treated it like a residential care home and completely locked it down, not giving us any access to Tony whatsoever.
322.Given the greater risk of mortality from covid-19 experienced by people with learning disabilities and the acute negative impacts which shielding had on this group, it may have been possible and desirable for the decision to prioritise this group for vaccination to have been made earlier. Implementing the decision was later hampered by a lack of data within primary care on patients with learning disabilities.
323.Isolation both from the outside world and from the services that traditionally offer care and support for people with learning disabilities took an emotional toll on both Tony and Maja. James described to us that his brother was “pining for me, because we are very close and I cannot see him” while Helen told us that her daughter Maja’s mental health deteriorated to the point that “she verbalised to me that she wanted to die”.
324.The loss of normal social support and care during the pandemic was part of a larger sense that people with learning disabilities were being overlooked by the Government. Written evidence to our inquiry pointed out that official guidance conflated the nuances of the adult social care sector, with a lack of bespoke guidance to the learning disability sector. Further, when guidance was provided, it was often later, contributing to the view that people with learning disabilities were not a priority for the Government. The Voluntary Organisations Disability Group told us:
From the outset of the pandemic, disabled people and their families and carers, and the workforce supporting them, have been overlooked in government guidance on infection control, personal protective equipment, and testing and there has been little recognition of the types of services supporting them. Care settings outside of older people’s care homes were the last to be included in the government’s routine testing programme, and still disabled people living in supported living settings and non-CQC registered settings are not fully included in the programme.
325.This point was similarly emphasised by Steve Scown, who was clear that “consistently, the Government guidance for registered care homes has been issued weeks in advance of guidance for supported living services”. While Vivien Cooper, founder of the Challenging Behaviour Foundation, told the Health and Social Care Committee that people with learning disabilities and autistic people have been only considered as an “afterthought” during the development of guidance. We recognise that there was a need for significant Government focus on residential care homes for elderly people, given the significant mortality risk to this group. However, there is a real sense that this focus came at the expense of the rest of the sector.
326.The confusion over ‘Do Not Attempt CPR’ (DNACPR) guidance was perhaps the most significant consequence of this. The LeDeR review of the deaths of people with learning disabilities from covid-19 found that in several cases ‘learning disabilities’ were given as the rationale for a DNACPR decision. This was despite guidance issued by NHS England and NHS Improvement on 3 April 2020 explicitly stating “the terms ‘learning disability’ and ‘Down’s syndrome’ should never be a reason for issuing a DNACPR order”.
327.Steve Scown of Dimensions UK told us that his organisation had seen several DNACPRs placed on the records of people that the charity supports “without any consultation with their families”:
We had medical staff placing those on medical records without due process. That basically means that if the person becomes ill you do not attempt to resuscitate. The fact that they were placed on files without any meaningful conversation with families or any other professional is, frankly, disgraceful.
328.We acknowledge that official NHS England and Improvement policy has always been that blanket application of DNACPRs to groups of people is inappropriate. Professor Ramani Moonesinghe, National Clinical Director for Critical and Perioperative Care at NHS England and Improvement, wrote to us in December 2020 stressing that there “is never a blanket application of do not attempt cardiopulmonary resuscitation orders”. Similarly, the then Secretary of State told us that “the idea that a DNR notice should be put on without the individual consent process and the correct decision being taken, with clinical advice on an individual basis—it is completely unacceptable”. However, a CQC review of the use of DNACPRs throughout the pandemic found that “all voluntary sector and some other stakeholders said they had either actual or anecdotal evidence of concerns about the issuing of inappropriate DNACPR orders”. According to the review, this may have been due to “confusing guidance, pathways and protocols”.
329.While it is clear that national NHS guidance was never to apply blanket DNACPRs to any group, the pattern of delayed and unclear guidance to the sector created widespread confusion on their appropriate use and certainly contributed to the perception in the sector that people with learning disabilities were not being valued in the same way as the general population during the pandemic. Steve Scown put this bluntly:
We have to admit the point that people with learning disabilities are not valued as equal members of society[…]
There is a fundamental problem about how people with learning disabilities are valued in society.
331.During the initial phase of the pandemic Black, Asian and minority ethnic people experienced significantly higher levels of severe illness and death from covid than was typical the population as a whole. Research conducted so far suggests that the drivers of these elevated levels of impact among Black, Asian and minority ethnic people arise from greater likelihood of jobs that come with higher exposure to covid infection; more challenging social and economic circumstances; more densely occupied housing; and comorbidities from different health conditions. These are classic features of inequality in society and in the economy.
332.Staff from Black, Asian and minority ethnic backgrounds are crucial to the NHS and care sectors. The covid-19 pandemic has brought the experiences of these staff into sharp focus. It is telling that the first ten NHS staff to die from covid-19 were from Black, Asian and minority ethnic backgrounds, and evidence has since confirmed that the impact of covid-19 on this section of the workforce has been significant. While the NHS has made progress in recent years, the experience of people from BAME groups during the pandemic has made it clear that inequalities persist.
333.People with learning disabilities have experienced significantly higher death rates from covid-19 than the country as a whole. Deaths have been especially high among younger adults with learning disabilities. Initial research suggests that people with learning disabilities entered the pandemic from a position of heightened vulnerability because of existing comorbidities. This was compounded by particular barriers to accessing NHS treatment during the pandemic arising from restrictions on non-covid care and limits on the ability of carers and advocates to attend hospital with people with learning disabilities.
334.Although there was never national NHS guidance to apply “Do not attempt CPR” (DNACPR) notices to people with learning disabilities, there have been widespread concerns that there were cases in which they have been issued inappropriately during the pandemic.
335.The Government should ensure its ‘levelling up’ agenda includes specific policies to reduce health inequalities, with a particular focus on ensuring that certain groups, including people from Black, Asian and minority ethnic backgrounds, do not continue to face unequal health outcomes.
336.It is essential that in any future crisis, NHS staff from Black, Asian and minority ethnic backgrounds are included in emergency planning and decision-making structures. NHS England should accelerate efforts to ensure that NHS leadership in every trust, foundation trust and Clinical Commissioning Group is representative of the overall Black, Asian and ethnic minority workforce.
337.Leadership in NHS England and Improvement should also increase their engagement with Black, Asian and minority ethnic worker organisations and trade unions to ensure that Black, Asian and minority ethnic members of staff feel valued by the organisation, are involved in decision-making processes and feel able to speak up when they are not being protected.
338.It is unacceptable that staff from Black, Asian and minority ethnic communities did not have equal levels of access to appropriate and useable personal protective equipment as their white colleagues during the pandemic. The Government must learn from the initial shortage of appropriate PPE for these staff and set out a strategy to secure a supply chain of PPE that works for all staff in the NHS and care sectors.
339.The NHS, local authorities and the Government should ensure that health advice during the remainder of the pandemic and in any future emergencies should be available in a full range of languages, and that outreach programmes should reflect what is most effective in the cultural context of different communities.
340.In planning for future health emergencies, the Department of Health and Social Care and the NHS should consider the specific difficulties faced by people with learning disabilities and their families and recognise the barriers to understanding and communication which, if not overcome, can lead to avoidable deaths of vulnerable people.
342.The NHS should ensure the guidance on DNACPR notices is clear and properly understood by healthcare professionals and individuals, especially in circumstances where a patient’s carer or advocate may not be able to be present in hospital.
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