The @PHE_uk report on COVID-19 deaths amongst people with learning disabilities in England has finally been published this morning. The link below includes a full report, a summary, an easy read summary and data tables.
Thread...
https://www.gov.uk/government/publications/covid-19-deaths-of-people-with-learning-disabilities
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Just to warn you - this thread will about people's deaths, and is grim reading.
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The analysis covers people with learning disabilities dying of COVID-19 (and other causes) up to 5th June 2020, the first peak of COVID-19 deaths in England.
5th June was over 5 months ago, suggesting to me there was a very long delay from analysis to publication.
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First, there is info from deaths of people with learning disabilities notified to the @leder_team programme. Anyone can notify a death, but notification is not mandatory - the estimate is that LeDeR only identifies two-thirds (65%) of actual deaths.
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Up to 5th June, LeDeR received 623 reports of COVID-19 deaths. Given the under-identification of people's deaths, the report produces an estimate of 956 people with learning disabilities who died of COVID-19 up to 5th June.
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Latest LeDeR info up to 30th October (after a summer of very few deaths, the number of COVID-19 deaths is beginning to rise again) reports 740 people with learning disabilities have died of COVID-19, which would mean 1,138 people have potentially died of COVID-19.
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If you use the estimated number of people who have died of COVID-19, the report estimates that people with learning disabilities were 3.6 times more likely to die of COVID-19 than people in England generally.
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Second, there is info from records of people who have died in hospitals with a confirmed positive COVID-19 test. Everyone is supposed to be flagged as a person with learning disabilities or autistic person vs not, but 25% of people are not flagged either way.
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Up to 5th June, this dataset recorded 490 people with learning disabilities & autistic people dying in hospital with confirmed COVID-19. Taking into account unflagged people, the report estimates that 651 people with learning disabilities & autistic people died with COVID-19
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Latest info from this dataset up to 4th November reports that 565 people with learning disabilities and autistic people have died in hospital with confirmed COVID-19, which translates into an estimated 750 people taking into account unflagged people.
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Taking the estimated number of people who have died of COVID-19 in hospital, the report estimates that people with learning disabilities & autistic people were 4 times more likely to die with COVID-19 than people without learning disabilities or people who weren't autistic
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Overall, it looks like the first peak of the pandemic had a disproportionate impact on the number of people with learning disabilities dying of any cause compared to the same time of year in 2019 (LeDeR data).
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This is particularly worrying given the higher proportion of avoidable deaths experienced by people with learning disabilities before the COVID-19 pandemic.
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The report also looks at which people with learning disabilities are more at risk of dying of COVID-19.
People with learning disabilities are more likely than the general population to die of COVID-19 at every age, but the discrepancy is bigger at younger ages.
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For people with learning disabilities, the peak age of death from COVID-19 is 55-64 years old - in the general population it is much older.
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As with the general population, men with learning disabilities were more likely than women to die of COVID-19.
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Again as with the general population, Asian or Asian British people with learning disabilities, and Black or Black British people with learning disabilities, were more likely than White people with learning disabilities to die of COVID-19.
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The vast majority of recorded COVID-19 deaths of people with learning disabilities (82%) happened in hospital, compared to 63% of the general population.
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The report also analyses PHE care home outbreak data, showing that care homes for people with learning disabilities were less likely than other care homes to have had COVID-19 outbreaks, probably because they are generally smaller.
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People with learning disabilities who lived in care homes were slightly more likely than other people with learning disabilities to die of COVID-19, which might be related to people in care homes being more likely to be in high-risk groups.
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Overall, I think this report is as definitive an analysis as we're going to get from the available information. It confirms that people with learning disabilities were much more likely than other people to die of COVID-19 in the first peak of the pandemic.
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It also confirms that people with learning disabilities were dying of COVID-19 across a wider age range than the general population in the first peak of the pandemic.
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It adds new information that, as for people generally, people from some ethnic minority communities and men with learning disabilities were at greater risk of dying from COVID-19.
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Finally, people with learning disabilities in residential care were more likely than people with learning disabilities living elsewhere to die of COVID-19, but that COVID-19 outbreaks were less likely to happen in care homes for people with learning disabilities.
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My main question is what is being done with this information? England has some of the most comprehensive information in the world about people with learning disabilities and deaths from COVID-19 (a low bar, seeing that most countries don't seem to report anything).
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Without practical action to make a real difference (and the continuing fixation on care homes for older people as a stand-in for all of social care is not a good sign), this is, as @GeorgeJulian says, just more 'performative scrutiny'
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