Senior health figures have promised that the NHS will “always seek to fully protect” the rights of disabled people during the coronavirus pandemic, after responding to concerns raised in a statement by scores of disabled campaigners and user-led organisations.
The response from Professor Stephen Powis, the national medical director of NHS England, and Ruth May, NHS England’s chief nursing officer, came just two days after the open letter warned that disabled people’s rights were “not always being upheld” during the crisis.
Powis and May later expanded on their response to the open letter, writing (PDF) to chief executives of NHS trusts, clinical commissioning groups (CCGs), GP practices and community health services across England to remind them of “the principle of equity of access for those who could benefit from treatment escalation”.
They also reminded them of the principle of “support for autonomy for those who want to be involved” in decisions about their treatment.
Disabled people’s organisations, user-led grassroots groups, disabled peers and leading disabled activists and campaigners were joined by scores of allies in signing the statement.
They said in the open letter: “We recognise that the NHS faces unprecedented pressures.
“We know that its staff will have to make difficult decisions about who gets treatment and care and who doesn’t.
“We understand that they will have to judge whether people will benefit and we know that people’s existing health will be taken into account.
“However, we have read about cases that have made us feel worried that the principles on which the NHS are built are sometimes not being upheld.”
They appealed for the NHS to uphold the rights of disabled people under human rights and equality legislation, and the UN Convention on the Rights of Persons with Disabilities, when decisions are made about their treatment.
They said: “Our individual chance of benefiting from treatment should we have Covid19 must not be influenced by how our lives are valued by society.”
They called on the NHS to be guided by other principles, including the need to ignore any health conditions that are unrelated to the chance of benefiting from treatment, and the need to ignore the fact that a patient may have significant support needs.
And they said that decisions “should never be made without our involvement, or consideration of our best interests”, while guidelines on treatment during the pandemic “must be developed in collaboration with disabled people’s organisations and representatives from human rights bodies”.
The statement was later signed by more than 1,000 other disabled people and allies.
It had been issued followed weeks of mounting concerns from disabled people about cases of apparent discrimination within the NHS in response to the pandemic.
Among those signing the statement were the disabled crossbench peers Baroness [Jane] Campbell and Baroness [Tanni] Grey-Thompson, who have both played leading roles in highlighting concerns in recent weeks.
Disabled people’s organisations, grassroots groups and user-led networks signing the statement included Inclusion London, the Reclaiming Our Futures Alliance, People First (Self Advocacy), Breakthrough UK, Cheshire Centre for Independent Living and Disability Rights UK.
Another DPO to sign it was the grassroots group Bristol Reclaiming Independent Living, which has also played an important role in highlighting concerns.
Powis and May said in their response to Baroness Campbell (pictured) that the NHS “endorses and fully supports the principles set out in this letter” and will “always seek to fully protect the rights of people with disabilities, now and throughout the course of this global pandemic”.
Baroness Campbell told them that their words were “welcome at a time of great anxiety felt within the disability community” and would likely “bring relief to those who have received less favourable responses from certain quarters of the medical profession”.
Powis and May later said in their letter to trusts, CCGs, GP practices and community health services that the “key principle” for clinicians was that each patient was “an individual whose needs and preferences must be taken account of individually”, while blanket policies were “inappropriate whether due to medical condition, disability, or age”.
They added: “This is particularly important in regard to ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) orders, which should only ever be made on an individual basis and in consultation with the individual or their family.”
The swift response from two such senior NHS figures was the most significant recognition from the NHS of the mounting concerns on the issue since the crisis began.
Among incidents that led campaigners to produce the statement was a care company that said GPs had written to three of its services for people with learning difficulties to say they had decided that all of their service-users should be deemed “do not resuscitate” if they became ill with coronavirus.
Another was a Welsh GP surgery which wrote to patients with life-limiting conditions asking them to sign DNACPR forms, partly so that “scarce ambulance resources can be targeted to the young and fit”.
The Guardian reported that care homes in Leeds had been asked by district nurses to “revisit do not resuscitate conversations with people who said they didn’t want them”.
Disability News Service (DNS) reported last month how the National Institute for Health and Care Excellence (NICE) had been forced to update guidance on which coronavirus patients should receive intensive care treatment, after concerns raised by disabled activists.
The previous week, DNS had revealed how an NHS critical care consultant appeared to suggest publicly that he and his colleagues would not attempt to resuscitate many older and disabled people if they became seriously ill with coronavirus.
And on Friday (3 April), guidance for doctors published by the British Medical Association (BMA) caused further alarm among disabled people.
It stated that, if demand for NHS services outstripped its capacity, doctors “may be obliged to withdraw treatment from some patients to enable treatment of other patients with a higher survival probability”.
It said this “may involve withdrawing treatment from an individual who is stable or even improving but whose objective assessment indicates a worse prognosis than another patient who requires the same resource”.
It also said that, if services become “overwhelmed”, the presence of other health conditions may exclude some patients from eligibility for intensive care or ventilation, while it may even be necessary “to discontinue treatment that has already been started”.
Among those disabled campaigners raising concerns about the guidance was Samantha Renke, who said in her column in the Metro that the guidelines suggested to disabled people that “we aren’t important enough to save” and that “disabled people don’t matter and aren’t worth investing in”.
Mike Steel, from Bristol Reclaiming Independent Living (BRIL), called for the government to issue its own guidance.
He said: “Despite the guidelines recently published by the BMA, the General Medical Council, NICE and other bodies, there is no national policy on the rationing or withdrawal of ventilation and other medical treatment during the pandemic.
“The government have abandoned individual doctors and hospital to make their own decisions. This is inexcusable.
“Without open debate, and clear legal guidance, we are entering into a realm where our fundamental right to life is at risk.”
Disability Action in Northern Ireland also said it was “deeply concerned” by the BMA guidelines and urged the doctors’ union to reconsider them.
*Disabled People Against Cuts has a template letter that disabled people can email to their MP if they are concerned about disabled people’s right to treatment during the coronavirus pandemic
**Links to sources of information and support during the coronavirus pandemic include the following:
The Department of Health and Social Care
National Survivor User Network
A note from the editor:
Please consider making a voluntary financial contribution to support the work of DNS and allow it to continue producing independent, carefully-researched news stories that focus on the lives and rights of disabled people and their user-led organisations.
Please do not contribute if you cannot afford to do so, and please note that DNS is not a charity. It is run and owned by disabled journalist John Pring and has been from its launch in April 2009.
Thank you for anything you can do to support the work of DNS…
Scope and Leonard Cheshire merger talks are met with scorn and concern
Coronavirus: Disabled people face discrimination from COVID traffic schemes
Round-up: Autistic children, looming jobs crisis, social care evidence… and Baywatch