Disabled campaigners are calling on two regulators to investigate concerns raised by the Office for National Statistics (ONS) that many of the deaths of disabled people during the pandemic could be linked to discrimination within the healthcare system.
The Equality and Human Rights Commission (EHRC) and the Care Quality Commission (CQC) are both refusing to say if they will act on the concerns, despite signing a new joint agreement to “safeguard the rights of people who use or work in health and social care services in England”.
ONS said last month that it “cannot rule out the possibility of remaining explanatory factors” for the increased risk of death for disabled people during the pandemic, such as “access to and pathways through the healthcare system”.
It said that the evidence it had produced “warrants further investigation”.
Since those comments last month, Disability News Service (DNS) has published further figures which show an even higher increased risk of death from COVID for disabled people aged between 30 and 69, compared with non-disabled people in the same age group.
ONS has confirmed that – after adjusting for health conditions and other factors – more-disabled women* aged between 30 and 69 have been 60 per cent more likely to die from COVID-19 than non-disabled women in the same age group.
More-disabled men aged between 30 and 69 have been 37 per cent more likely to die from COVID – after adjusting for health conditions and other factors – than non-disabled men in the same age group.
The new memorandum of understanding between EHRC and CQC “outlines how both regulators will improve co-operation and the exchange of information between them on equality and human rights issues”.
And it states that they will “take a joint approach when necessary, to make sure health and social care providers uphold their responsibilities under equality and human rights law”.
But when asked if they would therefore now take action to investigate the ONS concerns, in accordance with their new memorandum of understanding, both EHRC and CQC refused to make any such promise or even to say they would consider an investigation.
Among disabled campaigners calling for CQC and EHRC to act this week was Mitch Coles.
Last summer, Coles was one of many people with neuromuscular conditions who were told by their NHS trusts that they could not be sent new anti-bacterial filters for their ventilators because they were needed for patients with COVID-19.
But he has told DNS that he also spent most of last year fending off attempts by his specialists for him to have a “do not attempt cardiopulmonary resuscitation” (DNACPR) order placed on his medical file, even though he had not been asked such a question since 2012, when he had made it clear he did not want a DNACPR on his records.
It was only at a recent face-to-face appointment, his first for more than a year, that he was able to address the issue in depth and secure an apology from his specialist for the way the request had been presented to him and other neuromuscular patients during the pandemic.
He said there was “without a doubt” a link between the ONS figures and the healthcare system.
The reviews by doctors of the DNACPR decisions of many disabled people last summer was, he said, “a way to convince people like me that it was OK to save the healthy people, but not ourselves.
“Simply put, when push comes to shove, we are shoved aside, even though I contribute to society the same as anyone else, and in some cases even more so.
“If the need for ‘further investigations’ has been recognised by ONS, which it has, then these investigations need to be thoroughly carried out.
“It shouldn’t be our job to push EHRC and CQC for this to be undertaken, but unfortunately it will have to be, which is often the case.
“The CQC and the EHRC shying away from investigating potential serious failures highlighted by the Office for National Statistics should be no surprise to anyone who has been following media coverage throughout the pandemic.
“The inadequate treatment of disabled people has been prolific from the very beginning.
“Nobody wants to face the music, but it’s about time that they do.”
Professor Peter Beresford, co-chair of the disabled people’s and service-user network Shaping Our Lives, said: “If anything has highlighted the breakdown of democratic checks and balances to ensure the accountability of government policy and policymakers, it is COVID-19.
“The latest instance of this is the disproportionate numbers of deaths of disabled men and women as a result of the pandemic, highlighted by the detailed data produced by the ONS.
“Sadly, two of the key organisations with responsibility in this area, the CQC and EHRC, have so far refused to respond effectively to this evidence.
“This is massively important. We urgently need to know what is happening.
“If we are to deal effectively with the next pandemic, we need to maximize the learning from this one to safeguard disabled people it is still putting at risk; its ongoing threats from new variants, etc, and the continuing harm from long COVID.
“Disabled people’s own organisations should at last be recognized as key players in this emergency and funded accordingly.”
Linda Burnip, co-founder of Disabled People Against Cuts, said: “I’d love to be able to say that lack of action from EHRC and CQC was a shock but obviously it isn’t.
“They are both utterly and totally ineffectual and as far as providing any protection for disabled people’s human rights – even their right to life – they may as well not exist.”
When asked about the ONS call for “further investigation”, CQC refused to say if it would take such action.
Instead, it stated that it had previously raised concerns about access to care for people with learning difficulties; that it was looking at access to services for people with learning difficulties and autistic people; and that it will be reviewing how health and social care providers work together in local areas to provide services for people with learning difficulties and autistic people.
EHRC reiterated its call for the government to carry out a review into the disproportionate deaths of disabled people during the pandemic, and said the ONS figures were “further evidence of the severe impact of coronavirus on disabled people”.
It said: “To mitigate risk as we continue to navigate a path out of the pandemic, it is imperative that government undertakes a review into the disproportionate deaths of disabled people, ensuring it takes their views and experiences into account.”
But neither CQC or EHRC mentioned links between the ONS figures and the health system, or the concerns expressed by ONS and its call for further investigation.
Neither of them suggested that they would carry out this “further investigation”.
Meanwhile, CQC has today (Thursday) published a review of how DNACPR decisions were made during the pandemic, a piece of work commissioned by the Department of Health and Social Care.
It found more than 500 DNACPR decisions put in place since 17 March 2020 “had not been agreed in discussion with the person, their relative or carer”.
The true figures will be far higher because this number is based on responses from only about 2,000 of the 25,000 adult social care providers CQC approached for information.
The report says this “presented a risk of inappropriate decision making and a risk of unsafe care or treatment”.
It also says that 119 of the 2,048 adult social care services that responded to its information request felt that people in their care had been subject to blanket DNACPR decisions – where such decisions are applied unlawfully to groups of people – since 17 March 2020.
The report says CQC found a “worrying picture of poor involvement of people using services, poor record keeping, and a lack of oversight and scrutiny of the decisions being made”.
It adds: “Without these, we cannot be assured that decisions were, and are, being made on an individual basis, and in line with the person’s wishes and human rights.”
Although the review found the pressure of responding to the pandemic had had an impact on how DNACPR decisions were made, the issues raised in the report “pre-date the pandemic”, CQC said.
*ONS examines the impact on those who described themselves as disabled people in the 2011 census, either by saying they were “limited a little” (less-disabled) in their daily lives or “limited a lot” (more-disabled)
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