Four disabled campaigners are taking legal action to force the government to make it clear that they will have the same right to life-sustaining treatment as non-disabled people if they contract coronavirus.
Their lawyers have written to health and social care secretary Matt Hancock and NHS England to challenge their failure to publish guidance for doctors on how to decide who receives life-saving treatment during the COVID-19 pandemic, if demand outstrips supply.
They fear that, if they become ill with the virus, they and other disabled people will be viewed as less likely to benefit from such treatment than non-disabled people.
Their action was inspired by an open letter, supported so far by more than 2,000 disabled people and allies, which warned that disabled people’s right to treatment in the NHS was not always being upheld during the pandemic.
Their lawyers, the public law and human rights experts Rook Irwin Sweeney, say the failure to produce guidance on how decisions will be made is discriminatory and a breach of their clients’ human rights.
The four disabled campaigners say they fear that value judgments will be made during the pandemic about their quality of life, which will see them pushed to the back of the queue for urgent treatment.
Doug Paulley (pictured, left), one of the four, said it was an “extremely worrying” time for him and other disabled people because they “just don’t know how doctors are going to prioritise life-saving treatment for coronavirus”.
He said: “I feel strongly that I should be given the same chance as anyone else – all I’m asking for is some reassurance that my life will be valued as much as the next person.”
The other three disabled claimants are AB, a 28-year-old writer and policy advisor from London; 17-year-old Francesca Adam-Smith (pictured, right), whose mother is acting for her in the case; and 24-year-old William Runswick-Cole, whose mother is acting for him.
Anne-Marie Irwin, a partner at Rook Irwin Sweeney, who is currently working for free on the case, as are barristers Steve Broach and Ruth Keating, said: “We hope that the government will listen to our clients’ concerns so that a solution can be reached without the need for litigation.”
The Department of Health and Social Care said yesterday (Wednesday) that it could not comment on pending or potential legal action, while NHS England had not commented by noon today.
The legal action came after the Financial Times published the latest in a series of official documents that have fuelled concerns among disabled people that they would not be treated equally if they became ill with COVID-19.
This document, which includes NHS branding, combines age, “frailty” and the presence of certain other health conditions to produce a total score that is used as a guide to decide whether a patient should be treated in an intensive care unit (ICU).
The “COVID-19 decision support tool” suggests, for example, that patients completely dependent on others for their personal care – illustrated with the image of a wheelchair-user – should not qualify for ICU-based treatment if they are aged over 60.
The FT article suggests that the tool has been circulated to at least some doctors and that it was developed for use within the NHS, although it also suggests that NHS England has claimed it is not an approved document.
Baroness [Tanni] Grey-Thompson, the crossbench disabled peer, one of those who supported this month’s open letter on disabled people’s right to treatment, said the coronavirus crisis had again raised concerns about disabled people being seen as “vulnerable”.
She said: “This is not new, it is what we have all known as individual disabled people, but this crisis has just brought it into the public domain in a way which it hasn’t done before, unless the ugly discussion on assisted dying is in the public domain.
“We are always challenging this view that disabled people do not have the same rights as everyone else.”
Caroline Miles, a member of the grassroots disabled people’s organisation Bristol Reclaiming Independent Living (BRIL) and a wheelchair-user with several long-term health problems, said the legal action was “exceptionally important” in the wake of a series of pieces of ill-thought-out guidance published by health bodies such as the National Institute for Health and Care Excellence (NICE) and the British Medical Association, which have had to be challenged by disabled people.
She said: “We urgently, desperately, need definitive guidance which is written with and agreed by actual disabled people and their representatives to minimise the need for further challenges to content that should have been blindingly obviously unacceptable from the outset.”
But she said she feared that, even when guidance has been retracted and replaced, some doctors will continue to follow it.
She said: “Disabled people like me will, having heard the bad guidance, make up our minds that we will refuse to even go to hospital if we get ill because it will lead to us being refused treatment, a need to fight for our life when we are too unwell to do so, and almost certain death, simply because of our disability, our labels, our needs.”
She added: “Even if a legal challenge is won, the news of the victory and the reasons why… will never be disseminated as far or as effectively as the message that said ‘just let disabled people die’.
“I’m genuinely terrified of becoming unwell and being told I need to go to hospital. I don’t believe I will go.”
A BRIL spokesperson added: “BRIL support this action.
“Disabled people and elders were already angry and frightened about the use of ‘clinical frailty scales’ and blanket DNR [do not resuscitate] orders.
“But again, in the absence of clear legal guidance from the government, a document has been published that both discriminates against disabled people and discharges responsibility onto individual doctors.
“It is also deeply worrying that no public body has accepted responsibility for producing this ‘decision making tool’.
“It’s unacceptable that it has already been sent to clinicians.
“We are very concerned that, even if this guidance is changed again, the implicit message that disabled people’s lives are not valued will influence decisions about who does, or does not, receive life saving treatment.
“We know disabled people who no longer feel safe to go to hospital.
“However, we feel that responsibility for this lies with central government and the secretary of state; they have repeatedly failed to consider the human rights of patients, or to support frontline NHS staff.”
Disability Rights UK said that the clinical frailty scale – which plays a significant part in the decision support tool and was also used in the controversial guidance published by NICE – should be “formally withdrawn by NHS England” as it “adds nothing to patient/doctor discussions, and if followed could lead to discriminatory assumptions being made on the grounds of disability and age”.
NHS England had not responded to requests for a comment on the decision support tool by noon today (Thursday).
*Links to sources of information and support during the coronavirus pandemic include the following:
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…