Between January and November 2020, disabled people accounted for a shocking 60% of all deaths recorded from Covid-19. We might think that this was because of the age profile or co-morbidities amongst this population group but Office for National Statistics analysis indicates that, even after adjusting for these factors the mortality rate was higher than for non-disabled people, and particularly so for disabled women and those with learning disabilities.
Other factors placed disabled people at risk, regardless of their age or health condition. For disabled people in general, measures of deprivation were the biggest factor accounting for some of the increased risk of catching and dying from the virus while for people with learning disabilities place of residence was the biggest risk factor, “suggesting that living in a care home or other communal establishment was a major factor in the increased exposure of people with learning disabilities to COVID-19”.
The risk posed by communal settings was also apparent amongst those deaths examined by the Learning Disabilities Mortality Review which found that:
A third (35%) of those who died from COVID-19 lived in residential care homes, rising to almost half of those with Down’s syndrome. A quarter (25%) lived in supported living settings. Priority must be given to supporting measures to prevent the spread of COVID-19 in these settings.
These are circumstances in which, generally, people do not have sufficient choice and control in their lives. Care homes and supported living services (group homes) in general have accounted for a disproportionate number of deaths during the pandemic, not only because people were discharged from hospitals without proper testing or isolation but also because of the movement of staff from home to home and the general difficulties of infection control in communal settings (especially when protective personal equipment was in short supply).
The fact that socio-economic factors accounted for some of the higher death rate amongst disabled people in general is evidence of significant structural inequality. Since 2010, changes to the benefits system - particularly those introduced in 2016 - have had the impact of making disabled people poorer, increased food bank use and driven up debt levels. This inequality and its impact on the death rate amongst disabled people during the pandemic is therefore a direct result of government policy.
Nevertheless, according to the ONS data when all risk factors were taken into account, “a statistically significantly raised risk of death remained unexplained for more-disabled and less-disabled women (1.4 and 1.2 times respectively) and more-disabled men (1.1 times) but not for less-disabled men”.
This raises the question: Are disabled people at greater risk because of unequal access to treatment and healthcare once they become ill?
On March 21st 2020, the National Institute for Clinical Excellence issued a new guideline on who should be admitted to critical care during the pandemic, based on the 1-10 Critical Frailty Scale. The guideline suggested that those scoring seven (severely frail, completely dependent on personal care “from whatever cause, physical or cognitive”) and above would be “unlikely to survive even with medical intervention” and that only those ranked 1-5 should receive critical care. A focus on what people can’t do for themselves was at the heart of determining whether someone should get access to critical care. So, if a person needed help with all daily living activities, then they were considered too ‘frail’ to benefit from a higher level of care (such as artificial ventilation). The Chief Executive of NICE defended the issuing of this guideline, saying that - although the guideline was developed in only 6 days - an equality impact assessment had been carried out, and:
Despite doing it so quickly, we had a comprehensive set of comments and they were supporting the use of the clinical frailty scale. It was something already in use across the system at that point. We did not hear any concerns about it being discriminatory in relation to disability at that point.
However, an outcry from a number of individuals and organisations and an Early Day Motion laid in the House of Commons resulted in NICE issuing a revised Critical Frailty Scale, which currently states that it should only be used for people “aged over 65, without stable long-term disabilities (for example, cerebral palsy), learning disabilities or autism”. Anyone, of any age, who had a “stable, long-term” condition, or “learning disabilities or autism” should receive “an individualised assessment of frailty” and the CFS score should not be used.
This, of course, still raises the question about why the need for personal care because of conditions related to old age should determine access to critical care. For disabled people of any age, it also begs the question: What is meant by ‘stable, long-term condition’? Many people live with progressive conditions for years and previously ‘stable’ conditions are often associated with increasing need for support as people get older.
I am puzzled as to why needing support in your daily life (at any age and for any reason) is evidence per se that you would be unlikely to benefit from being admitted to critical care. This is the antithesis of what we mean by independent living: the need for support does not mean that you cannot have self-determination or a good quality of life, instead it is having choice and control over the support you need which delivers such things. Neither should the need for support undermine your right to life.
Yet it would appear that, not only might the need for support determine access to critical care, but it may have influenced whether some people got access to any hospital treatment during the pandemic.
In the early months of the pandemic, there were press reports of DNR notices and advanced care plans being applied across whole groups of people in residential settings. These included care homes catering for older people as well as group homes catering for people with learning disabilities and/or autism. Reviews of the deaths of people with learning disabilities noted several instances where “frailty or ‘learning disabilities’ were given as rationales for a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decision for people who had died from COVID-19, yet this was not the case for people who had died from other causes”. The report concluded that “Further reminders that ‘learning disabilities’ or a clinical frailty score are not appropriate reasons for a DNACPR decision in people with learning disabilities may be required.”
The Care Quality Commission has found that some people living in care homes died potentially avoidable deaths because of inappropriate decisions about treatment. Some were subjected to blanket decisions ruling out attempts at cardiopulmonary resuscitation, and “providers sometimes conflated decisions about DNACPR with decisions about whether to admit people to hospital or provide covid-19 treatment”. An Amnesty International report specifically focussing on older people found considerable evidence of inappropriate or unlawful use of DNR notices by GPs, clinical commissioning groups, hospitals, and care homes.
Surely a clinically based decision is an experienced doctor’s judgement as to whether the treatment will improve your chances of survival to a quality of life that you find reasonable, combined with your views as to whether you want to go through the experience of whatever the treatment is itself. And in most cases I suspect that is what happens except that, in the case of disabled (and older) people, pre-existing prejudices about the quality, or indeed value, of someone’s life can get in the way - a particularly dangerous situation when someone has difficulty communicating their wishes, or is not even asked what they are.
In addition, a failure to enable disabled people to benefit from treatment even once they are admitted to hospital may also help to explain the disproportionate number of deaths. Jo Whiley, in bringing public attention to the need to prioritise people with learning disabilities for vaccinations also provided a graphic description on BBC Radio 4’s Today programme of the kind of support her sister needed (and initially lacked) when she was admitted to hospital with Covid-19. She described how her sister’s communication and cognitive impairment meant she was terrified and reacted by trying to escape from staff trying to treat her. It was only when her parents were allowed into the hospital and were able to reassure and calm her that it was possible to provide her with the treatment that enabled her recovery and discharge from hospital.
But in how many other cases was there not such a response and happy outcome? Reviews of deaths amongst people with learning disabilities found, “The most frequently reported required reasonable adjustments that were NOT made for people who died from COVID-19 were: the provision of specialist learning disability services in hospital; tailoring care provision to meet individual needs; and ensuring the person was supported in unfamiliar settings by those who knew them.”
This is despite BMA ethical guidelines which state “Doctors should bear in mind that, as public servants, it may be appropriate to make reasonable adjustments for those with disabilities. That could mean permitting a learning disabled patient to be accompanied by a carer even if that is generally prohibited under infection control rules”.
For many many years, disabled people have been campaigning for choice and control in our lives, for the right to self-determination, to have a say in how we are supported, where we live and who with, and for the right to make the most basic daily living choices that most non-disabled people take for granted. We made progress but this was always limited, primarily because of the constraints inherent in the existing systems of delivering support and housing.
Since 2010 the government has made disabled people poorer, failed to reform and improve social care, and neglected to develop the kind of housing and support services which would have delivered a better quality of life. All in all they have exacerbated structural inequalities and the mantra of ‘work is the best route out of poverty’ remains an insult to those who are not able to work and/or face direct and indirect discrimination.
At the same time, we have been labelled ‘vulnerable’ with little or no recognition of the factors - which have nothing to do with our impairment or illness - which create socio-economic deprivation, unequal access to healthcare and, in this pandemic, a greater risk of dying. In the run up to the Independent Living Fund being abolished in 2015, I wrote two blogposts entitled “What’s your plan for people whose lives we apparently can’t afford?” The lack of any plan has had its stark consequences during this pandemic.