UPDATE: If you want easier to read information about the deaths of people with learning disabilities during COVID-19, please click here to go to a brilliant easier to read summary made by Bradford Talking Media.
This blogpost (written on 2nd June 2020) tries to sum up the main issues coming out of the information released so far on the deaths of people with learning disabilities during the first phase of the COVID-19 pandemic in England. So far, the information released about the deaths of people with learning disabilities has been minimal, grudging and it feels to me deliberately designed to be inaccessible to pretty much everybody (although the Care Quality Commission press release today does have an easy-read version). How are people with learning disabilities, family members, organisations supporting people, health services and organisations setting local and national policy supposed to make informed decisions about what to do?
Information about the deaths of people with learning disabilities is collected differently, started at different times, is updated (or not) at different times, is reported differently, and involves different groups of people using different criteria for deciding whether a person has died of COVID-19 related causes or not. Because of all these differences I think we will never know accurately the number of people with learning disabilities who have died COVID-19 related deaths during the pandemic. While the figures collected will include autistic people with learning disabilities, I suspect we will continue to have virtually zero information about the deaths of autistic people without learning disabilities, which is why in this blogpost I am generally writing about people with learning disabilities rather than people with learning disabilities and/or autistic people.
But, for people with learning disabilities in England at least, I think there is enough information now to draw some initial conclusions that are really important for action.
The table below summarises the three main sets of information we have so far about the deaths of people with learning disabilities in England during the COVID-19 pandemic. I don’t know of similar information being published for Scotland, Wales or Northern Ireland. I don’t propose to go into massive detail here about the similarities and differences between these three sets of information (nobody but nobody, wants that) but to use information from these and other sources to highlight some consistent and inescapable conclusions.
Before looking at the information about people with learning disabilities, it is important to understand deaths amongst the general population of England throughout the COVID-19 pandemic so far. The best source for this is the Office for National Statistics (ONS), which produces weekly information on deaths attributed to COVID-19 (both confirmed deaths via testing and suspected deaths) or attributed to other causes based on death certificates, so this covers everyone no matter where they lived or died.
The graph below shows the number of non-COVID-19 deaths (the blue columns) and the number of COVID-19 related deaths (the red columns) each week from the beginning of January 2020 to the week ending 22nd May 2020. There is also a dark blue line, which is the weekly average of all deaths at the same time of year in the 5 years before COVID (2015-2019).
There has been lots of analysis of this information, so there are just a few things I want to mention here that will be useful to bear in mind when we’re looking at the information for people with learning disabilities later. First, although they’re too small to be able to see on the graph, COVID-19 related deaths (the red columns) start to be recorded in the week ending 13th March. The number of people dying COVID-19 related deaths rises really quickly to a peak in the weeks ending 17th and 24th April and is now declining, although the decline is not as rapid as the increase was in April. Second, looking at the deaths not attributed to COVID-19 (the blue columns), these also in absolute terms increase at the same time as the number of COVID-19 deaths was peaking. This could be because some COVID-19 related deaths were not recorded as such on death certificates (for a whole host of reasons), and/or because more people were dying of other causes because they weren’t accessing typical health services or those health services were not available as the NHS geared up for COVID-19. This is where the dark blue line of the average number of deaths in the 5 previous (non-COVID) years is really helpful – it shows us that at the first peak of the pandemic, more people were dying of non-COVID attributed causes than usual for the time of year (these deaths are often called ‘excess’ deaths, which is why some analysts prefer to look at the total number of deaths in a pandemic to judge the broad effect of a pandemic on people’s health).
COVID-19 and others deaths of people with learning disabilities in England – the LeDeR programme
The nearest equivalent to the ONS data for people with learning disabilities is the LeDeR programme. This started asking about COVID-19 deaths on 16th March 2020, relatively early on in the pandemic in England, it records both confirmed and suspected COVID-19 deaths, and people who live and die in any location can be recorded (although the LeDeR notification process is not mandatory).
The graph below shows weekly information on the COVID-19 related deaths (the red columns) and non-COVID-19 related deaths (the blue columns) for people with learning disabilities in England. [The first blue bar on the left of the graph looks very high because it is adding up all the deaths of people with learning disabilities notified to LeDeR from 1st January to 20th March 2020 – so 11 weeks’ worth of deaths rather than 1 week]. In total, since COVID-19 recording started up to 22nd May, 530 people with learning disabilities have been recorded as dying a COVID-19 related death (the red columns) and 680 people from the start of 2020 have been recorded as dying from another cause (the blue columns).
What does this graph show us? There are some similarities to the ONS data, in that the number of people with learning disabilities dying a COVID-19 related death rapidly increased to hit a peak slightly earlier than the general population in the weeks ending 10th and 17th April 2020, after which the numbers have been rapidly declining. Because we don’t have weekly information from the LeDeR programme on deaths due to non-COVID-19 causes before COVID-19 was starting to hit, it’s hard to tell if the number of non-COVID-19 attributed deaths (the blue columns) increased at the peak of the pandemic for people with learning disabilities as it did for the general population. However, the number of non-COVID deaths for people with learning disabilities was much lower for the week ending 22nd May than for the week ending 27th March, suggesting that even by 27th March the number of non-COVID-19 deaths might have been higher than usual.
In summary, the number of deaths of people with learning disabilities peaked at around the same time (mid-April) as deaths for the general population, with the biggest increases in deaths attributed to COVID-19 and potentially little change in the number of deaths not attributed to COVID-19.
‘Excess’ deaths and people with learning disabilities
Unfortunately, what we don’t have for the LeDeR data is the equivalent of the dark blue line in the ONS data – how many deaths have occurred at the same time of year in previous years - so we can look at whether there are more or fewer non-COVID-19 deaths during the pandemic compared to previous years. The LeDeR programme may be able to produce this information for 2019 but if so it has not been published yet.
In the absence of this, we have to speculate on the basis of scraps of information that we have. Extrapolating fairly wildly from death certificate information collected in 2016-2019 from about half of GP practices in England would suggest that, averaged out over non-COVID years, around 54 people with learning disabilities die every week. Looking at the LeDeR graph, this would suggest that there may not be huge numbers of ‘excess’ deaths of people with learning disabilities from non-COVID causes during the pandemic compared to previous years.
The information released today by the CQC tells a similar story. Of the 386 deaths of people with learning disabilities reported in the 5 weeks from 10th April to 15th May 2020, 180 of these were not attributed to COVID-19 – this is not much different from the 165 deaths of people with learning disabilities in the same places recorded for the same 5 weeks in 2019.
However, it is crucial to remember that people with learning disabilities are in any year much more likely to die at much younger ages due to avoidable causes compared to other people – for people with learning disabilities, every year is a year of ‘excess’ deaths. Indeed, the same death certificate information I’ve just mentioned reported that people with learning disabilities in 2016-2019 were around 4 times more likely to die than people without learning disabilities of the same age and sex.
In summary, while the level of non-COVID-19 deaths may not be that different as the pandemic peaks to previous years for people with learning disabilities (which is a different pattern to the general population), the ‘baseline’ level of deaths for people with learning disabilities is already much higher than the general population.
People with learning disabilities are at disproportionate risk of COVID-19 as the pandemic peaks
One startling difference between the data for the general population and the data for people with learning disabilities is the proportion of people’s deaths attributed to COVID-19. In the general population, even at the (first) peak of the pandemic less than 40% of weekly deaths were attributed to COVID-19. For people with learning disabilities, approaching 70% of people’s deaths were attributed to COVID-19 around the peak of the pandemic. Even taking into account any speculative potential differences in how people’s deaths were recorded, this strongly points to people with learning disabilities being more severely (fatally) impacted by COVID-19 when pandemics reach a peak.
The information released by the CQC backs up the LeDeR data (although the CQC COVID-19 data only started being collected when the pandemic was hitting its peak). Over the 5 weeks 10th April to 15th May 2020, 206 out of 386 deaths of people with learning disabilities were suspected or confirmed COVID-deaths, over half (53%) of all deaths in that time. A very recent study from The Netherlands found a similar pattern of people with learning disabilities being more severely affected (in terms of deaths) than the general population during a flu epidemic.
The information from NHS England on the confirmed COVID-19 deaths of people with learning disabilities and/or autistic people in hospitals in England also points to a similar conclusion. As of 26th May 2020 (with people only starting to be flagged on 24th March 2020, when the pandemic was already under way), NHS England reported a total of 477 people with learning disabilities and/or autistic people had died in hospital of confirmed COVID-19 compared to 19,496 deaths for everyone else (I have not included in this analysis the 6,554 people who were not flagged either way). This means that over this time period 2.4% of all confirmed COVID-19 deaths in hospitals were people with learning disabilities. In their initial press release, NHS England tried to claim that this figure was roughly equivalent to the proportion of people with learning disabilities and autistic people combined in the population as a whole. I think this is misleading. While careful prevalence studies might get you to that sort of percentage, health professionals flagging people in health systems are much more likely to be using GP registers of people with learning disabilities (there is no equivalent register for autistic people). At the end of March 2019, these registers were reporting that 0.5% of the population in most adult age brackets were people with learning disabilities. This would suggest that people with learning disabilities were 4-5 times more likely to die of confirmed COVID-19 in hospitals than other people.
And, like the LeDeR data and the Dutch flu data, this might be even worse at the point when a pandemic peaks. Although NHS England didn’t break down their initial information week by week they have done so since. For the two weeks up to 26th May, when the pandemic was past its initial peak, 1.5% of all confirmed COVID-19 deaths were people with learning disabilities (still 3 times the death rate of other people), compared to 2.5% of all confirmed COVID-19 deaths in the 8 weeks up to 12th May.
In summary, people with learning disabilities are disproportionately likely to die a COVID-19 related death than other people, and this difference is biggest when a pandemic reaches a peak.
Age of death and people with learning disabilities
The CQC data for the first time provides a breakdown on COVID-19 and non-COVID-19 deaths by broad age band for people with learning disabilities (this is for people living in residential care or using community-based social care). This breaks down the number of deaths of people with learning disabilities in the 5-week period 10th April – 15th May by age bands. Their graph of this information is copied below. The purple column on the left of each age band is the total number of deaths that occurred in this time period in 2019 for comparison purposes. In the blue stacked columns, the darker blue part of the column is 2020 deaths not attributed to COVID-19, and the lighter blue part of the column is 2020 deaths attributed to COVID-19. It should be said that the other data sources could easily provide this breakdown as well, but as yet nothing has been made public.
I think this graph shows some important findings. First of all, even in 2019 the peak age of death for people with learning disabilities using these types of social care was 55-64 years. Although the number of non-COVID deaths in 2020 was similar overall to the same period in 2019, there do seem to be ‘excess’ non-COVID-19 deaths among the 55-64 age group. And although it’s hard to see in this graph format, I think the number of COVID-19 deaths amongst people with learning disabilities is really substantial from relatively early in adulthood.
This pattern of deaths by age band is completely different to the general population. In the general population in England and Wales, 42% of people dying of COVID-19 were aged 85 years or more, another 32% were aged 75-84 years, and another 15% were aged 65-74 years. It is clear that people with learning disabilities are dying of COVID-19 at much younger ages than the general population (a new journal article from the USA reports similar findings).
Remember earlier on, when I suggested that people with learning disabilities were dying COVID-19 related deaths at substantially higher rates than other people, particularly when pandemics are at their peak? This age band analysis means that the figures I talked about earlier actually under-estimate how much more likely people with learning disabilities are to die of COVID-19 than other people. People with learning disabilities generally die 15-20 years earlier than other people, so bluntly speaking fewer people make it to the ages that are the highest risk for COVID-19 death among the general population (although some older people with learning disabilities, if they are living in mainstream residential care for older people, may not be identified as a person with learning disabilities). This, coupled with the increased health problems that people with learning disabilities have at earlier ages than other people (largely due to socio-economic inequalities and discrimination people experience from a very early age), mean that the risk of dying from COVID-19 must be even higher for working age adults with learning disabilities compared to the general population.
In summary, substantial numbers of working age adults with learning disabilities are dying COVID-19 related deaths, and are almost certainly at much higher risk of COVID-19 related deaths than the general population.
What we still don’t know
Although there is much more information than there was, there is so much important information that has yet to be analysed or released.
For example, we know virtually nothing about the staples of analysis for pretty much every group – what is the risk of death (both COVID-19 related and non-COVID-19 related) by age, sex or ethnicity for example? This should be easy to do with the LeDeR, NHS England and CQC datasets.
We could know much more about how COVID-19 and other deaths occur over time, particularly to help with reconciling different sources of information about the deaths of people with learning disabilities.
We know nothing about how the health conditions which we know are associated with risk of COVID-19 related deaths (for example diabetes, obesity, various respiratory conditions and several others) are associated with risk of COVID-19 and non-COVID deaths amongst people with learning disabilities. Are there particular health conditions that are particularly risky for people with learning disabilities? The existing NHS England dataset on people dying in hospitals already has the information to do an interim analysis of this.
We still know very little about potential differences in risk of death according to where people with learning disabilities were living before they died. The CQC data reports that, of the 386 deaths of people with learning disabilities in total in their dataset, 195 of these were people who had been living in residential social care. This is 39% of all deaths of people with learning disabilities in those 5 weeks (using data from the LeDeR programme), when according to NHS Digital social care statistics only 21% of adults with learning disabilities getting long-term social care (let alone all those who aren’t eligible) are in residential or nursing homes.
This translates to a death rate of 6.3 people with learning disabilities per 1,000 people with learning disabilities living in residential care in the 5 weeks 10th April – 15th May, or an annual death rate of 65.6 people per 1,000. This is a death rate approximately 4 times higher than the 17.7 people with learning disabilities per 1,000 people with learning disabilities living in care homes reported in newly published pre-COVID research across England and Wales. We know nothing about whether the risks of death are different for people with learning disabilities living with their families, in supported living, living independently, or living in care homes. We know nothing about the deaths of people with learning disabilities currently in specialist inpatient units, beyond the NHS Digital Assuring Transformation dataset reporting for the first time ever at least 5 deaths of people with learning disabilities and/or autistic people in specialist inpatient units in the month of April 2020.
We know nothing about the deaths of autistic people without learning disabilities.
There has been very little effort to make any of this information accessible.
What does it all mean?
This blogpost is extremely long because I wanted to show my working out so people can evaluate whether it makes sense or not. The conclusions are really straightforward:
1) People with learning disabilities are at much greater risk of death from COVID-19 than the general population, particularly at times when pandemics are at their peak. Whether during a pandemic or not, people with learning disabilities are at much greater risk of dying from other causes than other people.
2) People with learning disabilities are likely to be at much, much greater risk throughout adulthood, rather than COVID-19 risk being a function of (older) age.
3) Like we have risk factors for the general population, we urgently, urgently need to know what the risk factors are for people with learning disabilities. This could be age, sex, ethnicity, what kinds of places people are living, deprivation and hardship, particular health conditions or combinations of health conditions, how much support people need and so on. Almost all of this analysis could be done with information that already exists.
4) It is important that as well as focusing on COVID-19 deaths amongst people with learning disabilities, we also remember to focus on other causes of death, where even without a pandemic people with learning disabilities are likely to die much younger than other people. Preventive health services like annual health checks, flu vaccinations and postural care are just as essential now as they were 6 months ago, and stopping these and other health services, along with the likelihood of life in lockdown being less mentally and physically healthy for people, might see an increase in non-COVID-19 deaths over time even if COVID-19 deaths do not reach another peak.
5) Disabled people, including people with learning disabilities, continue to be completely invisible throughout COVID-19. Public Health England today published a "COVID-19 review of disparities in risks and outcomes" - no mention of disabled people at all. Audit data from intensive/critical care shows that needing assistance with daily living is one of the biggest risks for dying within 30 days of entering critical care, even taking all the other risk factors into account, and no-one seems concerned about this. Information is put out with no attempt to produce easy-read versions or to bring people with learning disabilities into this crucial conversation. I oscillate between contained seething, occasional rage and more frequent despair about this.
Jonathan Senker of Voiceability has written an excellent blogpost on what needs to be done, now, to ensure people with learning disabilities are not disproportionately hit by any second wave of COVID-19 infection like they were the first time. I highly recommend that you read this (much, much shorter) blogpost – there are 9 headlines:
1. Ensure existing guidance on equal access to quality healthcare is followed
2. Gather reliable information and take action based on it
3. Provide personal protective equipment
4. Provide coronavirus tests
5. Take action to protect people moving into and between care settings
6. Reduce staff mobility
7. Consider if people will be safer in other settings
8. Review what is in the best interests of people subject to deprivation of liberty
9. Involve people in decisions that affect them
If you have reached this far, you have suffered enough. I will stop there.