Unequal impact? Coronavirus, disability and access to services: full Report Contents

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3Health and social care

37.As set out in our interim Report, the Coronavirus Act restricted disabled people’s important, hard-won rights, including by substantially raising the threshold at which their care and support needs must be assessed and met. We will continue to push for greater accountability and transparency while Care Act easements remain available to local authorities and for their swift repeal should the pandemic become more clearly under control before or at the next six-monthly parliamentary review, due in spring 2021.47 Disabled people’s concerns about health and social care, however, go beyond the temporary provisions of the emergency legislation. Below we examine potentially discriminatory policies and practices in health and social care during the pandemic and consider some key equality issues for disabled people as NHS services reopen. We also examine the Government’s record in protecting disabled people in social care settings and return to look at pre-existing, systemic problems in the sector that were identified in our interim Report, and which have been exacerbated by the pandemic.

Potentially discriminatory policies and practices

NICE guidelines for critical care

38.Some deeply concerning equality issues affecting disabled people emerged at the beginning of pandemic. In March, when there were fears that the NHS may become overwhelmed by coronavirus patients, the National Institute for Health and Care Excellence (NICE) issued guidelines for the delivery of critical care in circumstances where resources became over-stretched to the extent that difficult decisions might be needed about who to prioritise for treatment.48

39.The NICE guidelines, first published on 21 March, included use of the Clinical Frailty Scale (CFS) as part of a holistic assessment of patients for critical care treatment. The CFS assesses people’s clinical frailty largely based on relative fitness and level of dependence on the care of others, on a scale of one (very fit) to nine (terminally ill, with life expectancy of less than six months). The NICE guidelines suggested that those scoring seven (severely frail, completely dependent on care “from whatever cause, physical or cognitive”) and above would be “unlikely to survive even with medical intervention”.49

40.This caused profound concerns amongst disabled people and their families, who feared they or their loved ones may be denied treatment. There was particular anxiety among parents of children with learning disabilities and people with stable, long-term disabilities such as cerebral palsy.50 Mencap, the national charity supporting people with a learning disability, described the guidelines as “deeply troubling” because they:

[…] suggest that those who can’t do everyday tasks like cooking, managing money and personal care independently–all things that people with a learning disability often need support with–might not get intensive care treatment.51

41.Professor Gillian Leng, Chief Executive of NICE, explained that the guidelines had been developed in “just over a week” at the beginning of the pandemic. The normal process for consulting on, developing and publishing NICE guidelines takes around two years. Professor Leng described the very truncated consultation process:

Normally, our guideline consultation is six weeks; we ran the consultation in six hours. We got 178 comments in those six hours. We had 26 organisations that contributed. We had comments back from the NICU [neo-natal intensive care unit] charity and intensive care charity, from the British Heart Foundation and from the Richmond Group of Charities. We heard from the lead for learning disabilities across the national directorate.52

42.Despite the extremely compressed timescale, Professor Leng believed NICE had gathered a “comprehensive set of comments”, which were broadly supportive of the use of the CFS in the circumstances. She also noted that the CFS had already been widely in use in the NHS prior to the pandemic and she had not previously been aware of any disability discrimination concerns.53

43.On 25 March, NICE issued revised guidelines, acknowledging the concerns that:

[…] applying the score to people with learning disabilities, autism and other stable long-term disabilities, would put them at a disadvantage when decisions were made about admission to critical care in this time of intense pressure.54

The revised guidelines made explicit that the CFS should not be used “in isolation” by clinicians making decisions about access to critical care and included a clarification that “the tool should not be used in certain groups, including those with learning disabilities or with stable long-term disabilities such as cerebral palsy.”55

44.While acknowledging the rapid revision of the guidelines, disability charities emphasised the effects the original publication had on disabled people. Edel Harris, Chief Executive of Mencap, told us they had caused “huge upset and anxiety” and feelings amongst disabled people that “their lives were less valued” than others.56 Fazilet Hadi of DRUK said that “the fact that [use of the CFS] was in someone’s head and that it was produced” made her feel “very uncomfortable”. She told us the whole episode had “left a bad taste”.57

45.We wanted to know what action NICE had taken to prevent the same response in future emergency situations. Professor Leng confirmed that:

We have reviewed our approach to developing these rapid guidelines. […] We have just published an updated process for developing rapid guidelines for things like public health emergencies for the future. We will make sure that we have a wider consultation period in the future and that we engage with […] the NHS England equalities team, to make sure we are being really rigorous about picking up any potential risks of inequalities.58

Evidence of inappropriate use of DNAR notices

46.In the early part of the pandemic, concerns were also raised about inappropriate use of “do not attempt resuscitation” (DNAR, or DNACPR) notices, potentially waiving access to life-saving treatment for covid-19, particularly for elderly people and people with learning disabilities in social care settings and hospitals. It was reported that some NHS primary care services were inappropriately encouraging disabled individuals to consent to a DNAR notice and that some GPs had applied blanket DNARs to groups of elderly or disabled people in residential care homes.59

47.On 3 April, the social care regulator, the Care Quality Commission, issued a joint statement with the British Medical Association, Care Provider Alliance and the Royal College of General Practitioners, emphasising the increased importance of personalised care plans for care home residents during the pandemic. While noting that advance care plans “may result in the consideration and completion of a DNAR form”, it emphasised that this should always be after discussion with the person receiving care themselves or, where someone lacked the mental capacity to take the decision, in line with established guidelines and “with the involvement of family members or other appropriate individuals.” The statement went on to clarify that, while GPs “have a central role in the consideration, completion and signing of DNAR forms for people in community settings”, they must not be applied to “groups of people of any description”.60 On 7 April, NHS England’s Chief Nursing Officer and its National Medical Director wrote to NHS Trusts, Clinical Commissioning Groups, GP practices and community health services to endorse the care sector’s joint statement and reinforce the principle that “blanket policies are inappropriate”.61

48.While acknowledging that swift action was taken, witnesses from disability charities believed that misuse of DNARs demonstrated a deeply concerning lack of regard for disabled people. Edel Harris of Mencap described this as “a serious matter, with serious implications”.62 Fazilet Hadi, speaking about the combined effects of NICE’s original critical care guidelines and the reported misuse of DNARs, said it left her:

[…] thinking that the NHS does not fully understand and respect disabled people. Those incidents, while they were put right on the face of things, have left me with concerns about what happens on the ground, what training medical people get and what is in the NHS plan around supporting millions of disabled patients to get an equal right to healthcare.63

49.We wanted to understand why potentially discriminatory practice had surfaced in the first place; whether action was being taken to review and remove inappropriate DNARs from people’s medical records; and how the NHS would ensure this issue would not emerge again.

50.In oral evidence in July, Celia Ingham Clark, Medical Director for Clinical Excellence at NHS England, said she suspected that some people in the NHS, working under huge stress at the outset of the pandemic, had “taken their eye off the ball”, which was “really regrettable”. She told us that several messages had gone out to GP practices, and to the whole NHS system, before and after the issue emerged, making clear “the importance of the individual approach” and the inappropriateness of any blanket use of DNARs for any groups of people.64 She was not aware of any plans to for an internal review.65

51.In August, Celia Ingham Clark wrote to update us that NHS England and NHS Improvement’s Palliative and End of Life Care team were currently developing “public facing information” about how all patients or their representatives can raise concerns about DNARs placed on records without their knowledge or with which they disagree. She also confirmed that GPs’ new Quality Improvement requirements for 2020/21 had been agreed with the British Medical Association’s General Practitioners Committee, to the effect that:

“[GP] practices will be required to review the records of patients on their learning disability register to identify those recorded as DNAR and confirm that this decision remains appropriate or to amend as clinically indicated.66

52.The Minister for Care, Helen Whately MP, insisted that the Government had supported the NHS’s “very rapid action” and its “very strong communications” about the DNAR issue. She said the Department was keeping the situation under review and would take further actions if necessary.67

53.In October, after we had finished hearing evidence, the Department of Health and Social Care asked the Care Quality Commission (CQC) to review how DNAR decisions had been taken during the pandemic, including people’s experiences in care homes, primary care and hospitals.68 On 3 December, after a period of consultation with people affected, it published an interim report, which confirmed that it had heard evidence of “unacceptable and inappropriate DNACPRs being made at the start of the pandemic.” There was also evidence of blanket use. The CQC announced plans to carry out further fieldwork in seven Clinical Commissioning Groups in December and January. Its final report, which will “aim to establish the scale of national concern” and consider DNARs as part of advance care planning, including for people “most at risk of neglect and discrimination”, is due to be published in February 2021.69

54.Early in the pandemic, the National Institute for Health and Care Excellence’s (NICE) critical care guidelines and doctors’ inappropriate or blanket use of “Do not attempt resuscitation” (DNAR) notices were potentially discriminatory. While we welcome actions taken swiftly to address disabled people’s concerns, and steps subsequently taken by NICE and the NHS to review their practices and try to put things right, the fact that potentially discriminatory practices emerged in the first place is deeply concerning. These issues caused disabled people great distress and anxiety and left them feeling their lives were less valued than others’. A robust response is required to restore disabled people’s confidence that their needs are given equal consideration across government and public services, should we be faced with a similar public health emergency in the future.

55.The Equality Act 2010’s Public Sector Equality Duty is intended to ensure public authorities have due regard, including in their decision making, policies and service delivery, to achieving the Act’s objectives, which include the elimination of discrimination against groups of people who share a protected characteristic. The Equality and Human Rights Commission has published non-statutory technical guidance on the Duty. This provides public authorities with a detailed and comprehensive guide to the law, but, while it can be admissible as evidence in the courts, it does not have its own legal authority. We believe disabled people’s experiences of public services during the pandemic make the case for a strengthening of the Public Sector Equality Duty, outweighing any concerns about additional burdens on authorities. The Government should consent to the Equality and Human Rights Commission issuing a statutory Code of Practice on the Public Sector Equality Duty.

Key equality considerations in reopening the NHS

56.The NHS is facing an extraordinary challenge in safely reopening non-covid health services while the pandemic is ongoing and dealing with large backlogs of cancelled appointments and treatments.70 Witnesses from disability charities emphasised the importance of equal treatment for disabled people in this process.71 Fazilet Hadi told us:

I would like to see the NHS consider not just medical priority but also the impact that being on a waiting list is having on your ability to function. If you are waiting with an existing impairment […], it is going to make life much more difficult for you, potentially, than for someone else.72

57.She acknowledged the huge challenge involved in balancing the needs of different groups of people waiting for appointments and treatments but hoped the process could be handled with “sensitivity, personalisation and a real understanding of people’s lives, not just through a medical lens.”73

58.Two key equality issues emerged in evidence to our sub-inquiry: the vital importance of access to healthcare for people with learning disabilities;74 and barriers to communication faced by many Deaf, hard of hearing and other disabled people since the introduction of much more widespread use of facemasks in healthcare services.75

Learning disabilities

59.Mencap argued strongly that healthcare for people with learning disabilities should be prioritised, to address well-understood pre-existing health inequalities and poor health outcomes. It noted several reasons why people with learning disabilities often missed out on the healthcare they needed, including misdiagnoses due to communication difficulties or “diagnostic overshadowing”, in which healthcare professionals assume that “the behaviour of a person with learning disabilities is part of their disability without exploring other factors”.76

60.Edel Harris, Mencap’s Chief Executive, noted the vital importance of annual NHS health checks for disabled people, so that previously unrecognised health needs can be identified and addressed. These health checks, like many other NHS services, had been suspended in most places. Mencap argued for them to be resumed as soon as possible.77

61.Celia Ingham Clark of the NHS told us that annual health checks for people with learning disabilities had been placed in the “carry on if you can” category during the pandemic, and that some providers had managed to continue them, though many had not. She told us that, since April, there had been a push from the top and centre of the NHS to “get things going again”. There had been a message to this effect to the whole NHS system from Sir Simon Stevens, Chief Executive of NHS England, then later, in May, to GP practices through primary care bulletins. More recently, the NHS had established seven “exemplar sites”, which were “promoting new ways of working to try to restore these services”. The aim was to ensure that more than 75% of people with learning disabilities attend an annual health check.78

62.Celia Ingham Clark emphasised that:

The reason this is particularly important is that people with learning disabilities have an increased risk of dying from physical causes and, in particular, respiratory infections and sepsis. It is absolutely key that we improve their physical health in order to protect them.79

As the pandemic progressed, distressing data on covid-19 death rates suggested that people with learning disabilities of all ages were particularly susceptible to the disease (see chapter 6).

63.In August, Celia Ingham Clark wrote to update us that NHS England had agreed with the British Medical Association’s General Practitioners Committee that restoration of services would be a quality improvement requirement for GP practices for the remainder of this financial year and that “improving the care of people with a learning disability” would be a “quality improvement topic”.80

64.Prior to the pandemic, people with learning disabilities experienced health inequalities and faced difficulties accessing healthcare and receiving accurate diagnoses and effective treatments. They had increased risks of dying from a range of illnesses, including respiratory infections. These problems have been exacerbated by coronavirus, to which, emerging data suggest, people with learning disabilities may be disproportionately susceptible. It is therefore vital that annual health checks for people with learning disabilities, designed to identify previously unrecognised health needs, are fully reinstated across the NHS as soon as possible. We welcome the British Medical Association’s (BMA) and NHS England’s recognition of the importance of improving care for people with learning disabilities, and their agreement that restoration of services is a quality improvement requirement for GP practices for the remainder of this financial year. We recommend the Department of Health and Social Care work with the BMA, NHS and organisations representing people with learning disabilities, including user-led groups, to set stretching but achievable longer-term targets for the full reintroduction of annual health checks across the NHS and for the percentage of disabled people who attend them.

Facemasks: barriers to effective communication

65.Ayla Ozmen, Head of Research and Policy at Action on Hearing Loss (now RNID) emphasised that for many people with hearing loss who rely on lip-reading “it is absolutely impossible to communicate with someone who is wearing a face covering.”81 Subsequent written evidence explained further that:

[…] people who are deaf or have hearing loss rely heavily on visual cues for effective communication. This includes body language, gestures, facial expressions and lip reading. Being able to see lip patterns and facial expressions is also vital for those who communicate through British Sign Language. People who are deaf or have hearing loss have told us that they are struggling to communicate with health and social care professionals during face to face consultations and interactions as a result of visual cues being masked by Personal Protective Equipment (PPE).82

Healthcare professionals with hearing loss were experiencing the same difficulties communicating with their patients.83 The charity noted recent World Health Organisation advice that, where continuous use of medical face masks is adopted, the effects on people with hearing loss should be “carefully taken into account.”84 Ayla Ozmen believed it was impossible for healthcare services to meet their obligations under the Accessible Information Standard in these circumstances.85 We discuss the Accessible Information Standard further in chapter 5.

66.In July, Action on Hearing Loss (now RNID) noted the approval of transparent facemasks for use in health and social care and welcomed new guidance issued to NHS Trusts, which included use of clear masks “where possible”.86 In oral evidence on 15 July, Jo Churchill MP, Parliamentary Under Secretary of State in the Department of Health and Social Care, told us that the Government was working towards making clear facemasks available and had “signed a contract” that week.87

67.In oral evidence on 2 September, Helen Whately MP, the Minister for Care, told us that the transparent facemasks were being trialled in the NHS and would imminently be trialled in social care settings.88 On 5 September, the Department announced that it had procured 250,000 clear masks, which would be distributed to NHS Trusts “over the next few weeks”. It stated that social care providers “will also have access to the masks through a new pilot system with Local Resilience Forums.” The Department and the NHS would “work closely with suppliers on future orders based on demand.”89

68.The widespread adoption of continuous facemask wearing in health and social care settings has made effective communication impossible for patients and healthcare professionals who lip-read, and much more difficult for Deaf people who use British Sign Language and people with disabilities which mean they are more reliant on facial expressions for communication. We therefore strongly welcome the development of medically approved transparent facemasks and the Government’s procurement of 250,000 pieces for distribution in the NHS and to social care providers. This is a good first step towards fully meeting the Equality Act’s Public Sector Equality Duty and reasonable adjustment obligations to disabled people, by ensuring that clear facemasks are readily accessible across the whole health and social care system, based on need. We are not, however, aware of any analysis of the adequacy of 250,000 masks to meet current or ongoing needs. We ask that the Department of Health and Social Care update us, in its response to this Report, on: progress in distributing clear face masks to NHS Trusts; the effectiveness of the pilot system to distribute the masks to social care providers through Local Resilience Forums; its assessment of the level of need for clear facemasks across health and social care services; and its plans for further procurement and distribution.

Slow response to protecting people in social care settings

69.Protecting the NHS has been one of the Government’s consistent aims and central messages from the outset and throughout this crisis. Disabled people and their organisations pointed to a slower response to protecting the social care sector as evidence of a relative lack of regard for services on which many disabled people rely.90

70.Initial government guidance to care homes focused on isolating people with the virus, hygiene and waste disposal. DRUK described it as “pretty inadequate”.91 Witnesses noted that the Department of Health and Social Care first published its Adult Social Care Action Plan, containing more comprehensive guidance for providers, on 15 April, more than three weeks after the first national lockdown was announced on 23 March.92

71.The first allocations from the Government’s £600 million Adult Social Care Infection Control Grant to local authorities were made on 22 May.93 Witnesses noted with dismay the early policy of discharging people from hospitals into care homes.94 The National Audit Office confirmed that this policy had been in place from 17 March until 15 April and applied to anyone medically fit to be discharged. In line with government policy at the time, not all of those discharged were tested for coronavirus.95

72.We heard that care homes faced extreme difficulties accessing personal protective equipment (PPE) and coronavirus testing for residents and staff. Edel Harris of Mencap described the experience of social care providers trying to access the PPE they needed as:

[…] a roller coaster right the way from the start. It is a daily challenge, not helped by, in the first few weeks, the guidance changing all the time. I think that was often because the fear was that the social care sector would use up all the PPE that, at the beginning, people felt should go to the NHS.96

73.Coronavirus testing in residential care homes was initially prioritised for the elderly and people with dementia, raising concerns about other groups in residential care that may be at risk. This included people of all ages with learning disabilities, for whom a spike in covid-19 deaths was reported in early June.97

74.When we heard oral evidence from disability charities in June, all social care workers and care home residents had been eligible for coronavirus testing since 28 April, but the Department of Health and Social Care had initially capped the daily number of care home tests at 30,000.98

75.Disability charities emphasised a lack of government guidance on infection control for providers and users of the range of Supported Living services, typically provided in disabled people’s own, or shared, homes.99 Edel Harris described a “void” of information, including in relation to testing in Supported Living settings.100 The Government’s guidance for Supported Living was not published until 6 August.101

76.Fazilet Hadi described how the apparently slow response to protect the social care sector made her feel as a disabled person:

The whole way social care was treated in the first month of the crisis showed a disregard for the lives of disabled people. Whether people meant that or not, that is what it felt like. Government knew where we were. We were in care homes, in Supported Living and receiving care in the community, and we were ignored for quite a long time. The death rates are a testament to that.102

77.Edel Harris believed there was “a whole education piece to do here” to convey the fact that “Social care does not just equal older people, as important as that is.”103 She emphasised that around half of public expenditure on social care is on working age adults.104

78.Anecdotal evidence to our sub-inquiry suggested that many working age disabled people had seen cuts to their care packages before and during the pandemic.105 Closures of day centres, vital to many disabled people and their carers, were a major concern.106 Many residential care homes were reportedly under threat of closure.107

79.In October, Think Local Act Personal (TLAP) published its rapid evidence review report on the effects of coronavirus on people’s experience of social care, which Ministers told us would inform their ongoing approach.108 While pockets of good practice were identified, TLAP noted that many of its findings made for “uncomfortable reading.” It found “general confusion and anxiety” about support packages and “loneliness and isolation” brought on by social distancing measures. People who accessed care and support services also experienced anxiety from financial pressures and practical concerns about accessing food, as discussed in chapter 2.109

80.Ministers defended their approach to protecting social care, noting that guidance documents such as the Adult Social Care Action Plan and the guidance for Supported Living were “huge” and “substantial” pieces of work.110 The Minister for Care, Helen Whately MP, also emphasised the extreme demands placed on the Department of Health and Social Care by coronavirus:

I would also say that we are coping with and responding to a pandemic that is placing completely new demands on a Government Department, requiring the creation of an organisation that can put out this scale and complexity of guidance. A huge amount of resource was redirected, for instance, into the social care part of the Department of Health and Social Care. People worked incredibly hard.111

Systemic problems in the social care sector and the need for urgent reform

81.Our interim Report concluded that the pandemic had “highlighted and exacerbated pre-existing systemic problems in the social care system”, in particular the lack of a long-term sustainable funding model; workforce issues, including low pay, poor career progression and high staff turnover; and often poor integration with NHS services. Broadly, the response to coronavirus had “demonstrated the need to place a much greater value on social care and its workforce.”112

82.The House of Commons Health and Social Care Committee considered these problems in detail in its recent inquiry into social care funding and workforce issues. Its Report, published in October, echoed our interim Report in concluding that:

The Covid-19 pandemic has had devastating consequences both for vulnerable people using social care, and for the committed professional workforce that provide that care. These challenges have been exacerbated by long-standing funding and workforce issues which need to be recognised by the government in a social care reform package that must be brought forward before the end of this financial year.113

It recommended an immediate funding increase to avert the risk of a market collapse or providers retreating from publicly funded care to private fee-paying care only. The Committee recommended the “starting point” for funding increases be an additional £3.9 billion annually by 2023/24.114

83.In his single year Spending Review on 25 November, the Chancellor of the Exchequer announced an additional £300 million of grant funding for local authorities’ social care services in 2021/22. Local authorities will also be able to raise council tax bills by up to 3% to raise extra funds for social care (increasing the existing 2% “adult social care precept”). The Government estimates that this will “enable local authorities to access over £1 billion of [additional] spending” for social care in 2021/22.115 This was alongside an additional £6.3 billion of cash funding announced for the NHS for the same period.116

84.We were disappointed with the 2020 Spending Review’s financial settlement of £300 million in additional grant funding for local authorities’ social care in 2021/22. We believe it falls considerably short of what is required. We agree with the Health and Social Care Committee that an increase in funding for social care, worth around £4 billion per year by 2023/24, will be a necessary first step towards fixing systemic problems in the sector.

85.The Government must bring forward a social care reform package, which includes the whole sector, in this financial year. There has been a tendency by successive governments to focus on the problem of rising costs of caring for elderly people, particularly in care homes, and the unfairness of being forced to sell family homes to pay for care in later life. While these are key problems for which solutions must be found, the Government’s reform package must be more wide-ranging, and include actions to improve the quality and personalisation of care and support for working age disabled people across all social care settings. It must address workforce issues across the sector, including low pay, poor career progression and high turnover. Its reforms must include a plan to more effectively integrate services and achieve parity of esteem across health and social care as a single system. The vital importance of the whole social care sector and its workforce has never been so apparent; it must now be valued accordingly.