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.