Back in April 2020 I helped write an open letter, directed at NHS England, the British Medical Association, Ministers and others which expressed concern about the risks to disabled people’s lives of policies and guidelines being considered, proposed or already enacted to deal with the prospect of healthcare rationing should the Covid-19 pandemic overwhelm the NHS. These included:
The leaked ‘clinical frailty scale’ designed to be used to triage patients for acute care based on the extent of pre-existing conditions and their age;
The BMA’s ethical guidelines which envisaged shifting to a ‘utilitarian approach’ and which explicitly entertained making judgments about access to treatment based on social worth should the means to do so on clinical grounds be exhausted;
And early evidence of GPs issuing blanket Do Not Attempt Cardio Vascular Resuscitation (DNACR) notices to working age people with learning disabilities and others living in care homes.
Over 2000 organisations and individuals signed the letter, which was covered on BBC News at Ten and which received a reassuring response from NHS England as well as prompting communications from NHSE about the proper use of DNACR notices.
In the end, hospitals were not overwhelmed in the way many had come to fear having witnessed the scenes in Italy and Spain in February. Nevertheless, the first wave of the pandemic took a shocking toll on the lives of disabled people. By July, almost 6 in 10 of all who had died from Covid-19 were disabled people. A team at Manchester University has estimated that 29,400 more care home residents, directly and indirectly attributable to COVID-19, died during the first 23-weeks of the pandemic than expected from historical trends, particularly affecting people living with dementia. People with learning disabilities had a ‘death rate’ from Covid-19 up to 6 times higher than others.
Of course, we can attribute a great deal of this disproportionality to the age and underlying health conditions of people that died, both of which have been shown to weaken the immune response to the virus and which significantly increase the risk of serious illness and death. And while people bemoan the restrictions on their freedoms borne of the Tier system and lockdowns, many millions of our fellow citizens who are considered ‘clinically extremely vulnerable’ have been under effective house arrest for almost a year and will continue to be for many months to come because of these risks, with huge implications for their health, wellbeing and freedoms.
But these intrinsic risks are only part of the picture. It exists also because disabled people of all ages are more likely to find themselves in situations of risk.
Congregate models of assisted living, including care homes and group supported living, are to Covid-19 (and other contagion) what flammable cladding is to fire in tall buildings. The larger the assisted living facility the greater the likelihood of a large number of people dying from Covid-19. This explains in particular why the pandemic has taken such a heavy toll on the lives of people with dementia.
Poverty plagues the lives of disabled people and the strong relationship between socio-economic status and the risk both of acquiring and dying from Covid-19 is well documented. Moreover, it is likely that disabled people will endure disproportionate levels of poverty resulting from the pandemic,
Unequal access to healthcare predates Covid-19 and particularly effects people with learning disabilities. Evidence has since emerged that DNACR notices were being issued without any consultation, sufficient to trigger an investigation by the Care Quality Commission.
These are just a handful of the factors that have conspired to make Covid-19 more deadly for disabled people than for others in our society. Each is emblematic of our failure to respect, protect and ensure the rights of disabled people.
So is the rationing of healthcare.
It might be argued that the reason the NHS was not overwhelmed in the first wave was down to the success of the ‘upstream triage’ which meant that so many disabled people, especially older disabled people, died outside of hospital, in care homes or other settings. Some of this may be objectively justified both on clinical grounds and on grounds that hospitals can be both hugely damaging environments and not a chosen place to die on the proviso that these are decisions made on an individual case by case basis. Yet it appears to have been a proactive policy both to discharge people to care homes, including people with Covid (or where their Covid status was not known) irrespective of the risk to others and to proactively pursue the avoidance of conveying people who became ill in care homes and other congregate settings to hospital. In sum, people were placed at risk and then denied access to healthcare in order to ‘protect the NHS.’ Was the ‘utilitarian’ approach – rather than the human rights approach that supposedly underscores the NHS – actually in action in April and May of 2020, permitting direct discrimination on grounds of age, disability and health status?
It seems highly probable that it is about to be.
It is obviously welcome now that people living in care homes, people with severe learning disabilities and others are now being prioritised for the vaccine and this provides some counter to any case of systemic discrimination. Nevertheless, the current wave is already more deadly than the first and does look set to overwhelm the NHS imminently and before the vaccine can have any material effect. We now face the prospect that those various decision-making tools and ethical guidelines that so concerned us last April will come into play as Doctors are faced with deciding who should or should not access acute care. We know the pressure is there again for care homes to accept people discharged from hospital with Covid-19. And it may already be the case that there is a policy of not conveying people living in care homes and other modes of assisted living to hospital to ‘protect the NHS’? In the coming days and weeks vigilance and information-sharing is going to be vital.
As we opened our letter last April: ‘the NHS is built on the principle that we are each equal in dignity and worth. It expresses our commitment to protect one another’s right to life and to health, no matter who we are.’ We cannot simultaneously claim to ‘protect the NHS’ while abandoning this principle.