- In this article I write about the deaths of people with a learning disability and some autistic people at the beginning of the Coronavirus pandemic;
- I have argued that politicians must not use politics as an excuse for not sharing information about Coronavirus
- And that we need to learn quickly from history and the information that we have;
- Then I use the example of what happened to people living in asylums in 1918 to show why sharing information and learning quickly is important;
- I then go on to look at the information we have about what is happening to people with a learning disability and some autistic people during the Coronavirus pandemic;
- This tells us that at the beginning of the pandemic a lot more people with a learning disability died than we would have expected;
- But by the middle of June the number of people with a learning disability who were dying was closer to what we would have expected;
- I finish by asking the government, the NHS and the CQC to work with people from across the whole community to make sure that fewer people with learning disabilities die from the Coronavirus in the future.
One of the things that we’ve heard a lot of during the Corona Virus pandemic has been the frequency with which scientists and politicians have used arguments about the need for robust data to justify not publishing the data that they’ve got. On the surface it might seem like a reasonable thing to state but too often when you dig beneath the surface of a refusal to publish, most of the genuine reasons for not publishing are political.
The reality about dealing with something that is unprecedented is that very little of the data that is available is robust. The thing about robust data is that you have to have systems in place in order to collect it. These systems have to ensure that the data is measuring the right thing and that it’s reliable and valid. They also have to be tested and quality assured before anybody can make judgements about whether or not the data that is being produced is accurate. It all takes time and one of the things that people have very little of, in dealing with a crisis like this, is time. Which is why transparency about the data that is available is so important. Over time the quality of the data and information that is being developed will improve but history teaches us that at the start of things, transparency and the real-time development of insight into what is or may be happening is crucial.
A while ago I read a paper by J M Cramer entitled Extraordinary Deaths of Asylum Inpatients During The 1914-1918 War (Crammer, 1992 ). It was originally published back in 1992. Essentially it tells the story of the rising death rate in asylums during the World War I, looking specifically at the rise in deaths that occurred once the war had started. In his article Cramer tells us that during the period between 1914 -18:
Nationally, in the 97 pre-war asylums the annual death rate ran steadily at about 10 per cent to 11 per cent of the resident population. In 1915 it was already 12.1 per cent, in 1916 12.6 per cent, in 1917 17.6 per cent, in 1918 over 20 per cent and then fell back to its old level in 1919 and 1920.
At first glance and with the benefit of hindsight we might be tempted to think that the higher numbers of deaths in 1917 and 18 would have been caused by the flu pandemic but Cramer’s analysis of the causes of death indicates that this was not the case.
As you can see from Table 1, in 1918 flu was responsible for a relatively small proportion of the deaths and the variation in the numbers of deaths per thousand for different asylums indicates that practices across different asylums had significant impact on the numbers of people who died within individual asylums. This variation is reflected in detail’s that Cramer provides on the reduction in the number of calories that people living in the asylums consumed during the war, a reduction that made them particularly vulnerable to the ravages of tuberculosis.
All of this analysis was done long after the war had ended but had it been done at the time, steps could have been taken to change policy and to hold poorly performing institutions to account – in short to save people’s lives. Unfortunately, the government of the day had other priorities and as is so often the case disabled people and the poor are almost invariably at the bottom of the list. This is why the real-time development of insight into how policies are actually being implemented is so important.
So, what is and has been happening to people with learning disabilities and autistic people during the Corona Virus Pandemic?
The short answer is that it has been difficult to tell because getting data out of the government has been like getting blood out of a stone. Initially NHS England announced that it only intended to publish data on the deaths of people with learning disabilities and autistic people on an annual basis as part of the Learning from Deaths Programme (LeDeR). In the context of a national crisis and pandemic, this lack of action and transparency was met with outrage and the threat of legal action on the part of some, including me. As often seems to be the case during this pandemic, the government changed its position and soon after began publishing some of the data that it has on the numbers of people with learning disabilities and autistic people who are dying of Covid-19. It was at the point at which they committed to this that I withdrew from the legal action.
Despite those commitments, what has become clear in the weeks that have followed is that the government has still published very little data that relates specifically to the effect that the virus is having on people with learning disabilities and autistic people. Probably just about enough to make a successful legal action unlikely but not enough to provide a clear picture of what is going on. At least not enough to make it easy. That we have any idea of what has been happening is very much down to the efforts of Chris Hatton.
In a recent blog (Hatton, COVID-19 deaths of people with learning disabilities in England: a quick update, 2020) on entitled “COVID-19 deaths of people with learning disabilities in England: a quick update” Chris draws on the LeDeR data to tell us that up to the 30th of June 620 people with learning disabilities have died of Covid-19 and that data provided by NHS England on people dying in hospital tells us that up to the same date 512 people with learning disabilities and autistic people have died in hospital with Covid-19. He goes on to argue that:
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.
At this stage, because of the incompleteness of the data, we cannot definitively state that Chris’ argument that the death rate between 24th of March and the 12th of May was 4 to 5 times higher is correct, but his argument is convincing. If there is any uncertainty it may lie around variation in the criteria that is actually being used in different trusts to flag somebody as having a learning disability or being autistic. However, if we accept the figures as a reasonable estimation, then it appears that in the early stages of the pandemic, people with learning disabilities are significantly more likely to die of Covid-19 than others. But is there any way of looking at the data or information available that would give us an indication as to how and why this may be happening.
Deaths in Care
At the beginning of June, the CQC (CQC, 2020) published data on the number of deaths of people with learning disabilities, “some of whom may also be autistic” in care settings. From that data we know that between the 10th of April and the 15th of May – 206 people with learning disabilities died from confirmed or suspected Covid-19. The CQC does give us a breakdown of how many people with learning disabilities during the period died in residential homes (195) and how many died in community settings (184) but does not break this down to tell us the proportions who died from Covid-19. This is an important omission as it would provide us with an insight as to whether or not the type of setting in which somebody lives has made them more or less vulnerable to the virus.
If we look at the data in Graph 1 which shows the data that LeDeR (NHS (LeDeR), 2020) has provided we can see that the peak of this stage of the pandemic
corresponds with the week ending the 17th of April, the same week in which the government first introduced testing for all people being discharged from hospitals to care homes and care home residents who were symptomatic (DoHSC, 2020), and three weeks after the introduction of the lockdown on March the 23rd and over a month since the government had moved from a strategy of containment to delay.
A Changing Death Rate
By comparing the number of deaths of people with learning disabilities per week (NHS (LeDeR), 2020) to the total number of people who died from Covid-19 during the corresponding week (Graph 2), we can see that during the very early stages of the pandemic, the proportion of people with learning disabilities dying from Covid-19 expressed as a percentage of the total number of people dying was actually as high as 5.38%.
If we accept Chris Hatton’s argument (Hatton, 2020) that hospitals are using GP registers to flag people as having a learning disability and nationally GP registers report 0.5% of the population as having a learning disability, then at the very beginning of the outbreak people with learning disabilities accounted for a hugely disproportionate number of deaths – almost 11 times the rate we would expected if people with learning disabilities were dying at the same rate as the general population. By the time this phase of the pandemic peaked during the week ending April 17th people with learning disabilities accounted for a little over 2% of the total number of people dying that week – so still indicating that people with learning disabilities were dying at four times the rate we would expect. During May this rate would continue to drop reaching 0.55% of deaths by the week ending the 19th of June. This would indicate that the things that were done or not done during the very early stages of this phase of the pandemic had a disproportionate effect on people with learning disabilities and that later interventions were less detrimental.
It is important to remember that during the early stage of the pandemic we are talking about “relatively” small numbers of people. Up to March the 20th, 10 people with learning disabilities had died in England out of a total of 186. It is possible that this number of deaths could be linked to a single outbreak or region or a single policy action such as the release of people from hospitals into the care sector. At the moment we don’t know, this is however something that LeDeR and NHS England will know.
What we do know is that the first people with learning disabilities to die of Covid-19 will have been infected before the publication of the Imperial College modelling paper (Ferguson N, 2020) suggesting that the continued implementation of milder mitigation strategies could lead to 250,000 deaths. So during the period when the government was pursuing that mitigation strategy; when it was not tracking and tracing effectively, not testing people who were being discharged from hospitals into the care sector and before the lockdown, people with learning disabilities were dying at a rate that far exceeded the rate that is now being achieved when these and other policies are at least partially in place.
There will undoubtedly be some within the government and the scientific community who will say that it is too early to make judgements about what might have been done differently, and that we need to wait for robust data, formal research and a public inquiry – and they should do all of those things – but they should also be mindful that winter is coming and with it the very real possibility of a second wave of infections. It is vital that the government, the NHS and the CQC are transparent about what has happened and that they work with people from across the community to identify what can be done to prevent yet more people with a learning disability, dying preventable deaths.
CQC. (2020, June 2nd ). CQC publishes data on deaths of people with a learning disability. Retrieved from https://www.cqc.org.uk/: https://www.cqc.org.uk/news/stories/cqc-publishes-data-deaths-people-learning-disability
Crammer, J. L. (1992 ). Extraordinary deaths of asylum inpatients during the 1914-1918 war. Medical History, 430-441.
DoHSC. (2020, April 15th ). Government to offer testing for “everyone who needs one” in social care settings. Retrieved from http://www.gov.uk: Government to offer testing for “everyone who needs one” in social care settings
Ferguson N, e. a. (2020, March 16). Report 9: Impact of non-pharmaceutical interventions (NPIs) to reduce COVID-19 mortality and healthcare demand. Retrieved from https://www.imperial.ac.uk/: https://www.imperial.ac.uk/media/imperial-college/medicine/sph/ide/gida-fellowships/Imperial-College-COVID19-NPI-modelling-16-03-2020.pdf
Hatton, C. (2020, July 2nd ). COVID-19 deaths of people with learning disabilities in England: a quick update. Retrieved from Chris Hatton’s Blog: https://chrishatton.blogspot.com/2020/07/covid-19-deaths-of-people-with-learning.html
Hatton, C. (2020, June 2nd ). What we know (so far) about the deaths of people with learning disabilities in England during COVID-19. Retrieved from Chris Hatton’s Blog: https://chrishatton.blogspot.com/2020/06/what-we-know-so-far-about-deaths-of.html
NHS (LeDeR). (2020, July 9th). COVID-19 deaths of patients with a learning disability notified to LeDeR. Retrieved from https://www.england.nhs.uk/: https://www.england.nhs.uk/publication/covid-19-deaths-of-patients-with-a-learning-disability-notified-to-leder/