Covid can be 30 times more deadly for people with learning disabilities

The Bristol University-led LeDeR review’s latest figures show shocking differences in the rate at which Covid is killing people with learning disabilities: over 6 times higher for all age groups, but 30 times more likely to die than other 18-34 year olds. This is partly explained by the higher rates of obesity and diabetes among people with learning disabilities, as well as Down’s Syndrome’s physical health impacts being a factor. These risks have been known for a while, and should have resulted in the health and weight loss drive which the Prime Minister has championed being made accessible to people with learning disabilities. However, as we noted in the Report of the National advisory group for People with Learning Disabilities and Autistic People there are other, deeply disturbing factors to consider and address.

Firstly, the report also finds that while the number of deaths of white people with learning disabilities was nearly twice as high this year as last year, for black and asian people it was over four times as high. There is no physical or medical reason for that of which I am aware: it suggests a layer of systemic racism on top of the prejudice which we know people with learning disabilities already encounter in the NHS and other public services. As Kevin Marriott says of his brother Nigel, 60, who died of Covid in April, “People with learning disabilities seem to be be swept aside. He wasn’t given the sort of treatment we would have expected…I got the impression that normal patients would have gone on to a ventilator, but he was just allowed to die.” (The Guardian, November 12)

In our report, we quoted a Learning Disability England survey which found that 13 social care organisations saw an increase in blanket “Do not resuscitate” orders (DNACPRs) in March and April. Turning Point challenged 22 during April/May compared to around three per month beforehand^[1].

How many people with learning disabilities were left to die, when others were treated and saved?

In our report, co-produced with people who have lived experience and families, we called for urgent actions to improve the health of people with learning disabilities and autistic people to reduce unnecessary deaths:

• analyse with urgency GP data on causes of death for autistic people and people with learning disabilities
• a campaign to reduce unacceptably high rates of obesity and diabetes, which increase COVID-19 risks
• reduce prescription of psychotropic medication, which may increase COVID-19 risks and urgently review medication for people with multiple prescribed medications which can carry multiple health risks
• outlawing ‘learning disability’ or ‘autism’ being given as a ‘cause’ of death or a reason for a DNACPR notice^[2].
• Working with self-advocacy groups, families and providers to ensure people with learning disabilities and autistic people, and their family carers and support workers, receive flu vaccinations^[3].

We are waiting for a response on all of these suggestions. The LeDeR report should be the spur to real, urgent action.

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[1] including a partially-sighted man with pneumonia wrongly diagnosed as coronavirus, who was discharged fully recovered from hospital after a brief stay, but found to have a DNACPR decision citing ‘blindness and severe learning disabilities’.

[2] This was a recommendation of LeDeR, who commented in their recent annual report that, “by recording Down’s syndrome for example as an underlying cause of death, it conceals the more specific causal sequence of events leading to the person’s death. This was the case for 655 deaths.”

[3] Three successive Learning Disability Mortality Review (LeDeR) annual reports identify that pneumonia and aspiration pneumonia are the most frequent conditions cited as Cause of Death for people with a learning disability.