COVID-19 deaths of people with learning disabilities in England: a quick update

Summary

• This blogpost updates information on the number of people with learning disabilities in England who have died of COVID-19, up to 30th June 2020.

• At least 620 people with learning disabilities have died of COVID-19 in England.

• The number of people with learning disabilities dying of COVID-19 is now around 5 people every week. For two weeks in April it was over 100 people every week.

• People with learning disabilities might still be more likely to die of COVID-19 than other people.

Because I haven't provided updates on the weekly information about the deaths of people with learning disabilities from COVID-19 since this long blogpost, this post is just a quick update of the numbers with little commentary. An excellent easyread summary of the information on COVID-19 deaths and people with learning disabilities has been produced by Bradford Talking Media (BTM). 

The graph below shows weekly information from the LeDeR programme, which is likely to be the best source of information we have on the deaths of people with learning disabilities in England (although it is unlikely to be complete). The red columns show the number of people who have died of suspected or confirmed COVID-19, and the blue columns show the number of people who have died of other causes. 

LeDeR reports that in 2020 up to 26th June, 620 people with learning disabilities have died of COVID-19, and 910 people have died of other causes. The number of people dying of COVID-19 has been running at 5-10 people per week (the numbers are rounded  to the nearest 5) for the last three weeks. The number of people dying of other causes has been running at 30-40 people per week for the last 5 weeks.

There is also weekly information on the confirmed COVID-19 deaths in hospitals of people flagged as a person with learning disabilities or an autistic person. In theory this database, unlike LeDeR data, includes autistic people without learning disabilities, but it only includes people who died in hospital and who were confirmed as having COVID-19. 

The graph below shows this information for the chunk of time 24th March-12th May (when the data were first made public), and then for every week after that up to 30th June 2020. This dataset reports that at least 512 people with learning disabilities and autistic people have died in hospital with confirmed COVID-19. For the last three weeks, this dataset has recorded 3 deaths per week of people with learning disabilities and/or autistic people. 

This dataset also reports the total number of people who have died confirmed COVID-19 deaths in hospital, where flagging information (is the person a person with learning disabilities, an autistic person, or not) exists. From 24th March to 12th May (around the peak of the pandemic), 2.5% of everyone dying in hospital of confirmed COVID-19 was a person flagged as a person with learning disabilities or an autistic person. I tried to argue in the long blogpost that this meant a COVID death rate 4 to 5 times higher for people with learning disabilities and autistic people compared to others. After the (first) peak of the pandemic, from 13th May to 30th June, this has dropped to 1.5%, which is still a death rate 2 to 3 times higher.

The last graph below is a bit experimental, trying to show the cumulative picture of COVID-19 and non COVID-19 deaths over time from the LeDeR and NHSE datasets. This is just a different way of showing the same information in the graphs above that some people might find useful.

Overall, it is a relief that the number of people with learning disabilities (and potentially some autistic people, although I'm not convinced how many autistic people without learning disabilities would be included in any of these figures) dying COVID-19 deaths (and to a lesser extent non COVID-19 deaths) has dropped substantially from the (first) peak of the pandemic. It does still look like COVID-19 death rates might be higher for people with learning disabilities than for other people.

This is no time for complacency, though, and part of preparing for any second COVID-19 wave urgently needs to include:

1) Regular, honest, accessible information produced by the government on these numbers and what they mean. Beyond a single press release, NHSE (which publishes the LeDeR data and the confirmed COVID-19 hospital data) has produced nothing at all to describe or explain this information and certainly nothing in easy read (which the CQC did do when discussing their data release). This would help people with learning disabilities and those around them understand and think through their options when it comes to risk and COVID-19.

 2) Some analysis of information they already have to help work out the circumstances in which people with learning disabilities are most at risk of dying from COVID-19. For both the LeDeR and NHSE hospital data, analysis by age band, sex and ethnicity should all be relatively straightforward. From the LeDeR data, an analysis of deaths by where people live (both regionally and also by what kind of place people were living in) is possible and urgently needed. From the NHSE hospital data, they could easily analyse how many people with learning disabilities and autistic people who died confirmed COVID-19 deaths had health conditions linked to higher COVID-19 risk (particularly diabetes, dementia, chronic kidney disease, chronic pulmonary disease and heart disease). 

It is beyond me why these analyses were not done and shared at least two months ago, in ways that people can use.