Disabled people, who comprise 60 per cent of Covid deaths, have been pushed to the side throughout the pandemic—placed low on the vaccine priority list until a sustained public campaign last month, and put at greater risk by the government’s failure to protect care home residents from infection. Disabled people have also faced healthcare discrimination: disability charity Mencap revealed that people with learning disabilities were told they would not be resuscitated if they were taken ill with coronavirus simply because they have a learning disability.
“Do not resuscitate” orders, which are usually made for people who are too frail to be helped by CPR, have been unlawfully placed on disabled people in both the first and second wave of the pandemic. So how has this been allowed to happen?
DNR orders were first used in hospitals in 1976. Patients were permitted to choose that option rather than receive more treatment, as doctors recognised that CPR could make certain people's conditions worse, rather than better. But now the National Health Service is facing the pandemic and government cuts, the DNR order—which was originally made to provide dignity and comfort—is killing the people it was built to protect.
Then-Health Secretary Jeremy Hunt was instructed by a Court of Appeal judge in 2014 to publish clear guidance around DNRs and the rights of patients and their families after a “do not resuscitate” order was placed on a dying woman's record without her family being consulted. Matt Hancock now seems to have forgotten the rights of disabled people. The government has made it clear that its priority is keeping the economy running, rather than protecting the lives of the most vulnerable section of society. Are these blanket orders a way to control the pressure on the NHS? More than likely—but if that is the strategy, it has gone disastrously wrong.
Simon Sansome, a disability campaigner who is calling for an independent inquiry into the treatment of UK disabled citizens during the Covid-19 crisis, believes the government has failed to protect disabled communities during the pandemic. “There has been no extra care in place for the vulnerable in the community… there is no reason why the death rate for people with disabilities should be so high,” he tells me. “It is only down to the direction of this government that it is—and [it] should be held accountable.” Disabled people lack trust in the government due to cuts in social care and elsewhere. Over half of people who currently rely on food banks have some form of disability. In 2018 Disability Rights UK found that over the last decade, disability benefit spending has reduced by £5bn.
The DNRs suggest that only those who are able-bodied and wealthy really matter to this government. In December, the Care Quality Commission said the “inappropriate” Do Not Resuscitate plans had likely caused avoidable deaths. DNRs are common in end-of-life care, as most patients are not in a fit state to survive CPR. But in many of these cases, unless a disabled patient specifically requested a DNR, they would not require one. The CQC confirmed these practices should not be imposed on patients in a blanket form.
Davina Hehir, Director of Legal Strategy and Policy at end-of-life support charity Compassion in Dying, tells me her organisation is deeply concerned about blanket DNRs being applied without consulting patients. “Compassion in Dying has experienced an increase in the proportion of calls to our information line [about DNR orders],” she says. “The pandemic has exacerbated longstanding issues with decision-making and communication of DNRs, including decisions made in a blanket fashion or without proper discussion with a person or their family, both of which are unlawful.
“Blanket DNR decisions being applied to certain groups of people are entirely unacceptable and discriminatory, cause considerable distress to individuals and their loved ones and risk denying people treatment that may be appropriate for them.” She adds that her charity has also heard reports on its information line of DNR decisions being made on the basis of age alone.
Sally Warren, former director for social care at DHSC and director of programmes at Public Health England, insists there is “no legal, clinical or moral justification” for blanket DNACPR (do not attempt cardiopulmonary resuscitation) orders. She adds: “While it is not clear how widespread the issues were, any inappropriate order not to attempt resuscitation is unacceptable.”
A Department of Health and Social Care spokesperson tells me: “It is completely unacceptable for ‘do not attempt CPR’ decisions to be applied in a blanket fashion to any group of people. This has never been policy and we have taken action to prevent this from happening.”
As a disabled person, however, I have felt the direct impact of the constant failure to support and protect disabled communities—which has been the case since long before the pandemic. The catastrophic neglect of disabled people during the pandemic will never be forgotten. DNR orders are just one small part of what we have had to endure. It should never have taken Jo Whiley, a high-profile DJ, fighting for her disabled sister Francis who was hospitalised with Covid-19 but could not get a vaccine, for our community to be heard. In 1995, disabled people were chaining themselves to buses in order to fight for equality. This later gave us protection in the form of the Disability Discrimination Act, now known as the Equality Act. Maybe when this is all over we'll see the likes of these protests once again, in order to convince the government to treat disabled lives with the care and respect we deserve.