“Shocking” new figures showing a huge rise in deaths of people with learning difficulties in the care system are probably “the tip of the iceberg”, but still show how disabled people have become “cannon fodder” during the pandemic, say campaigners.
The figures, released by the Care Quality Commission (CQC) this week following pressure from an ongoing legal action, suggest that the number of deaths more than doubled compared with last year.
Between 10 April and 15 May, care services that provide support to people with learning difficulties and autistic people reported 386 deaths of people with learning difficulties, compared with 165 in the same period last year.
This was an increase of 134 per cent, said CQC.
Of the 386 people who died this year, 206 were due to suspected or confirmed COVID-19.
Of those who died, 184 people were receiving care from community-based adult social care services and 195 had been living in residential settings.
CQC suggested that the true number of deaths related to COVID-19 was likely to be even higher.
It was unable to say how many of those who died were also autistic.
Simone Aspis, a disabled activist campaigning to highlight and reduce the number of deaths of autistic people and people with learning difficulties, said the figures were “shocking” but just “the tip of the iceberg”.
She said they appeared to show the impact of the disablism and discrimination that was “alive and kicking within the NHS”, such as within guidance for the NHS and attempts to place “do not attempt resuscitation” orders in disabled people’s medical records.
Aspis hopes more accurate figures will eventually allow a comparison between the prevalence of people with learning difficulties and autistic people dying from COVID-19 and other groups.
And she hopes they will also show if people with learning difficulties and autistic people are more likely to die through COVID-19 if they are in an institution rather than living in their own homes.
But she also stressed the importance of ensuring that all such data being released was accessible to people with learning difficulties “so we can understand whatever action we need to take to put pressure on the government to do away with the discrimination that disabled people and people with learning difficulties are facing daily in the healthcare system”.
She told Disability News Service: “If we have got the data, we as a group of people are able to act on it.”
Despite the publication of the figures, Aspis and three other campaigners* are to continue with a legal action against CQC, NHS England, health and social care secretary Matt Hancock, NHS Digital, and the UK Statistics Authority.
They say their failure to publish “accurate and reliable” data on how many autistic people and people with learning difficulties are dying from COVID-19 is both “irrational” and “discriminatory”.
Kamran Mallick, chief executive of Disability Rights UK, said: “We said at the beginning of the pandemic that disabled people must not be allowed to become cannon fodder.
“It would appear that for those who have needed the most support, this has come to pass.
“People with learning disabilities have a life expectancy of 20 years less than those without outside of pandemic times.
“This virus is shining a spotlight on those life expectancy inequalities, and exacerbating them to frightening levels.”
Alex Rook, a partner with Rook Irwin Sweeney, said the information published by CQC this week was only “partial” and was likely to be an under-estimate of the true number of deaths because of the way the data was collected by the regulator.
He said it also failed to cover the start of the pandemic, and there was no information on how many autistic people had died.
Rook said his firm would be writing to Hancock, NHS England and CQC this week to explain why the information published so far was incomplete and to give them “one more chance” to provide the necessary data before they pressed ahead with the legal action.
*Mark Neary, who took a ground-breaking Court of Protection case in 2010 relating to the unlawful deprivation of liberty experienced by his son Steven; Dr Sara Ryan, who has fought for justice for her son Connor Sparrowhawk, who died a preventable death in an NHS institution in 2013; and open justice campaigner Dr George Julian
**For sources of information and support during the coronavirus crisis, visit the DNS advice and information page
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