New guidance for the NHS on which coronavirus patients should receive intensive care treatment has heightened fears among activists that many disabled people will be refused life-saving treatment if they are admitted to hospital.
The guidance from the National Institute for Health and Care Excellence (NICE) says that all adult COVID-19 patients should be assessed for “frailty” when admitted to hospital, and that “comorbidities and underlying health conditions” should be taken into account.
Following alarm and outrage from disabled people and allies, the government body announced late yesterday (Wednesday) that it had produced an updated guideline.
But the new version has not eased all those concerns, with one disability campaigner warning that disabled people who need support would still be less likely to receive critical care if the guideline was followed and one grassroots group of disabled people saying that it was “not reassured” by the amendments.
It was the use of the CFS “frailty” scoring system that caused most alarm, with the guideline suggesting that those with a score as low as five – those seen as “mildly frail”, who often need help with transportation, heavy housework and medication (nine represents someone who is terminally ill) – might not be considered appropriate for critical care and might be steered towards end-of-life care instead if their condition deteriorated.
The guideline said that decisions to admit patients for “critical care” should be based on how likely they were to recover.
Among those raising concerns about the original version of the new guidance was disabled actor and activist Liz Carr.
She said on Twitter that the guideline suggested she and many other disabled people would be “pretty much denied [the] same access to ventilation/critical care support as non-disabled people based on the fact we require some assistance in our daily life, because we’re disabled”.
She said this was “terrifying and discriminating”.
When NICE said it was “very aware of the concerns of some patient groups about access to critical care” and that it understood “how difficult this feels”, another disabled activist, Dennis Queen, told the organisation: “It’s not about how we feel – you are denying our human rights.
“We pay [the] same taxes for this disgraceful unequal treatment.”
Another disabled campaigner, Angela Kennedy, said on Twitter: “It’s more than ‘difficult’: it’s justified concern that discrimination against disabled people – because we need support, assistance and reasonable adjustment to live with our disablement – will drive unlawful decisions to refuse us a right to life. Your guidelines caused that.”
Greater Manchester Coalition of Disabled People told Disability News Service (DNS) last night (Wednesday) that it was “alarmed that the government – via the NICE guidance – has confirmed that, when there’s competition for beds, the NHS will ration ICU care, so that many disabled people (especially elders) will be denied treatment, based on a scoring system.
“It’s also a much bigger group than those of us being told to protectively self-isolate.”
Mike Steel, from Bristol Reclaiming Independent Living (BRIL), said his grassroots group of disabled people was “highly concerned” about the NICE guideline, and the manner of its admission that the original version was flawed.
He said: “We have been shown with stark clarity the ease with which denying our most fundamental human right – the right to life – is normalised and reduced to being part of a ‘discussion’.
“We are not reassured by the amendment made to say that younger people and people with ‘stable long-term disabilities’ should not be assessed using the CFS, yet others can be.
“Categorising and dividing disabled and chronically ill people by age or personal care needs in order to decide who gets critical care is ableist and dangerous.
“The reality is, as a direct consequence of years of drastic cuts and a failure to plan by central government, frontline health staff will be put under immense and unfair pressure to make decisions about care.”
He said the guideline appeared to have been drawn up without the input of disabled people, and he added: “When we are excluded from decisions about our lives, not only are mistakes made, our very being is devalued.”
The concerns over the guideline came as more than 60 UN human rights experts, including Catalina Devandas Aguilar, the UN’s special rapporteur on the rights of persons with disabilities, warned in a statement* that action taken to cope with the COVID-19 crisis must address human rights issues and could not only be solved through public health and emergency measures.
They said: “Everyone, without exception, has the right to life-saving interventions and this responsibility lies with the government.
“The scarcity of resources… should never be a justification to discriminate against certain groups of patients.
“Everybody has the right to health.”
A disabled mother, who tweets at @Whovian242, told NICE on Twitter after the publication of the first version of its guideline: “This morning I read that according to these guidelines if I am assessed based on my care needs I won’t be eligible for critical care.
“With respect your comment ‘we understand how difficult this feels’ feels incredibly dismissive.”
Wheelchair dancer and consultant Shay Erlich added: “You have instituted a widespread tool and unleashed it for clinicians who will be making split second decisions in an overloaded system.
“Saying you have to take this advice in context in these circumstances only assures it won’t be.”
NICE said on Twitter that it accepted that the frailty scoring system was “not perfect” and so it recommended that doctors should “take any decisions about care in conjunction with patients and their carers where possible”.
It also said it welcomed clarification by the NHS Specialist Clinical Frailty Network (SCFN) that the frailty scoring system should not be used to assess certain groups, which it later said were “younger people, people with stable long-term disabilities, learning disabilities, autism or cerebral palsy”.
After publishing the updated guideline last night – following an update on using the CFS by SCFN – NICE said its new version included these clarifications and “the need to consider additional patient factors when interpreting the CFS score”.
The European Disability Forum (EDF), an umbrella organisation of disabled people across Europe, spoke out this week about reports of discriminatory medical guidance for the COVID-19 pandemic.
EDF said it was “extremely worried” about such reports coming from “some countries”.
It later told DNS that it had spoken out due to concerns raised by activists in the UK and other countries, including Sweden and Ireland.
It added: “In countries where healthcare professionals will not be able to provide the same level of care to everyone due to lack of equipment and underfunding of the healthcare sector, medical guidelines need to be non-discriminatory and follow international law and existing ethics guidelines for care in the event of disaster and emergencies.
“These are clear: persons with disabilities cannot be discriminated against.”
An EDF spokesperson added: “We believe that countries need to involve persons with disabilities and their organisations when writing these guidelines.”
Maureen Piggot, a member of EDF’s executive committee, said last night: “I welcome the clarification of the NICE guidelines, but it does not go far enough.
“The UK needs to follow the UN Convention on the Rights of Disabilities and explicitly ensure that there is no discrimination against persons with disabilities – this includes healthcare guidelines that provide equal access to life saving support.”
The Reclaiming Our Futures Alliance (ROFA) said this week that it was “deeply concerned” about the “eugenicist rhetoric that has been used to suggest that disabled people will have less access to medical treatment and equipment if they fall ill due to or during the pandemic”.
ROFA – whose members are all disabled people’s organisations and include Inclusion London, Disabled People Against Cuts, The Alliance for Inclusive Education, People First (Self Advocacy), Sisters of Frida and Equal Lives – called on the government to “ensure that disabled people are not discriminated against in the response to COVID-19”.
The NICE guidance added to concerns raised by last week’s DNS report about an NHS consultant who appeared to suggest in an open letter that he and his colleagues would not attempt to resuscitate many older and disabled people if they became seriously ill with coronavirus.
Cardiff and Vale University Health Board, which runs the hospital where the consultant works, has again refused to clarify his comments.
Instead, it issued a statement in which it said that every individual patient was different and that care plans “will depend on their individual circumstances where the most appropriate treatment will be offered based on their needs”, while it said the letter “was written to show the compassion and care NHS staff can offer during such a difficult period”.
*Here is the first part of the UN statement: “Everyone, without exception, has the right to life-saving interventions and this responsibility lies with the government. The scarcity of resources or the use of public or private insurance schemes should never be a justification to discriminate against certain groups of patients.
“Everybody has the right to health. People with disabilities, older persons, minority communities, indigenous peoples, internally displaced people, people affected by extreme poverty and living in overcrowded settings, people who live in residential institutions, people in detention, homeless people, migrants and refugees, people who use drugs, LGBT and gender diverse persons – these and other groups need to receive support from governments.
“Advances in biomedical sciences are very important to realize the right to health. But equally important are all human rights. The principles of non-discrimination, participation, empowerment and accountability need to be applied to all health-related policies.”
**Sources of information and support during the coronavirus pandemic include the following:
The Department of Health and Social Care
National Survivor User Network
Picture: Dennis Queen (centre) speaking at a protest outside a Conservative party conference in Manchester
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