COVID-19 and non-COVID deaths among people with learning disabilities in England - what happened through 2020?

 As we come to the end of a grim 2020, this short blogpost will go through weekly statistics on the deaths of people with learning disabilities in England from COVID-19 and non-COVID causes through 2020. I have been putting updates on this information in tweet threads but I haven't put them into a blogpost for quite a while. 

There are two sources of weekly information about COVID-19 deaths amongst people with learning disabilities. The first is the LeDeR programme, originally set up to facilitate local reviews of the deaths of people with learning disabilities in England. It is national in scope but notifications of deaths to the programme are not mandatory. On its notification form, the LeDeR programme started asking about COVID-19 deaths on 16th March 2020, relatively early on in the pandemic. NHS England/Improvement have been publishing weekly information on suspected or confirmed COVID-19 deaths and deaths from non-COVID-19 causes from the LeDeR programme for some time, including a weekly easy read summary.

The first graph below shows the number of people with learning disabilities who died from COVID-19 each week throughout 2020 (the first column on the left is all COVID-19 deaths from when the LeDeR programme started recording COVID-19 deaths up to 20th March). It is important to note that all numbers made public are rounded to the nearest 5, and that if there are fewer than 5 deaths in a week the number is suppressed (standard practice to prevent potential identification of people). 

This graph shows that the number of people with learning disabilities who died from COVID-19 rose very rapidly during the first peak of the pandemic in England and reduced to virtually zero by the end of June. Through the summer very few COVID-19 deaths of people with learning disabilities were reported, but from October to the end of the year the number of people with learning disabilities dying from COVID-19 has increased again but to nothing like the levels in the first peak.

Overall, the LeDeR programme has reported that 840 people with learning disabilities in England have died from COVID-19 up to the 11th December 2020. A Public Health England analysis of this information through the first peak of the pandemic estimated that 65% of deaths of people with learning disabilities were notified to the LeDeR programme - using this estimate would suggest that almost 1,300 people with learning disabilities in England have died from COVID-19.

The second graph below adds in people with learning disabilities dying from non-COVID causes throughout 2020 (the blue columns). The first blue column on the left is so large because it includes all non-COVID deaths from the start of 2020 up to 20th March - after this the blue columns are weekly deaths from non-COVID causes. It is worth noting that the figures for very recent weeks tend to under-report deaths from either COVID-19 or non-COVID causes as notifications of deaths can come in some time after the person has died - the LeDeR programme updates these numbers as notifications come in. 

This graph shows that weekly deaths from non-COVID causes fluctuate from week to week, but don't seem to be particularly high or low at times when COVID-19 deaths are high or low. In total, the LeDeR programme has reported that 2,095 people with learning disabilities have died from non-COVID causes in 2020 up to 11th December. Assuming the same level of under-notification deaths I mentioned earlier, the estimate would be that over 3,200 people with learning disabilities dies from non-COVID causes in 2020 up to 11th December.

Have more people with learning disabilities in England died from COVID-19 and non-COVID causes combined compared to previous years? This is hard to know as good information from previous years isn't available on the number of deaths of people with learning disabilities. As a crude indicator, I have taken the average number of deaths per week reported to the LeDeR programme in 2019 and added this to the graph below as a green line.

In the first part of the year, pre-COVID, many fewer deaths of people with learning disabilities were notified to the LeDeR programme compared to the average for that number of weeks in 2019. I don't know why this is - the LeDeR programme reports some fluctuations throughout 2019 as you would expect, but not to this extent.

Beyond this, during the first peak of the pandemic three times as many people with learning disabilities were dying from COVID-19 and non-COVID causes combined compared to 2019. Once the first peak died down the number of people with learning disabilities dying from COVID-19 and non-COVID causes has been roughly similar to average levels of deaths in 2019.

A second, less comprehensive, source of information is on people who have died from confirmed COVID-19 in hospitals on a weekly basis through 2020. This information, also published by NHS England/Improvement, started flagging people with learning disabilities and autistic people in this dataset from 24th March, although over 20% of people have not been flagged at all (whether they are a person with learning disabilities or an autistic people, or not). 

The graph below shows the number of people flagged as a person with learning disabilities or autistic person who died from confirmed COVID-19 in hospitals from 24th March up to 16th December 2020. The first column on the left is so large because it covers 6 weeks rather than 1 week, at the height of the first peak of the pandemic. 

This graph shows a similar pattern over time to the LeDeR information on COVID-19 deaths I discussed above - large numbers of people dying in the first peak of the pandemic, falling to very few deaths in the summer but starting to increase again from October onwards (although not anywhere near the level of the first peak).

Overall, this dataset reports that 663 people with learning disabilities in England died of confirmed COVID-19 in hospital in England. If we assume that unflagged people include people with learning disabilities and autistic in the same proportion as flagged people, this figure would be almost 840 people.

In the first peak of the pandemic, these figures suggested that people with learning disabilities and autistic were 4-5 times more likely to die than you would expect from the number of people with learning disabilities registered with GPs. So far in the second peak, it looks like people with learning disabilities and autistic people are twice as likely to die than you would expect - an improvement on the first peak, but still a very high figure.

The final graph below just puts all this information together into a graph on the cumulative number of people with learning disabilities who have died COVID-19 and non-COVID=19 deaths over 2020 according to these two data sources. I'm not sure it adds much, but maybe it's helpful as an alternative way of visualising the information.

I don't want to add a lot of commentary to this, but there are three things I will say:

1) The number of people with learning disabilities who died from COVID-19 in the first peak of the pandemic should be a permanent stain on the reputation of people in a position to do something about this who were warned early on and did nothing.

2) We cannot be complacent about what is happening to people with learning disabilities during the second peak of the pandemic in England - this peak is not over yet and we are in the depths of winter after, for many people with learning disabilities, long periods of isolation and restriction.

3) To my mind, this is yet further evidence for people with learning disabilities as a population to be prioritised for the COVID-19 vaccine. Dithering about this or ignoring it until it's too late is not good enough - people and services need to start preparing now if vaccinating people with learning disabilities is to happen comprehensively.