On the day (19th July 2021) that England have legally lifted pretty much all restrictions while cases of coronavirus are rising exponentially, this blogpost will try to set out what I think we know about the current situation of people with learning disabilities in relation to COVID-19 and the potential consequences of the new absence of public health measures to restrict the virus. I will try to be measured – I may not succeed.
COVID-19 risk of infection, hospitalisation and death among people with learning disabilities
Throughout the first two major peaks of COVID-19 in the UK, multiple
sources of information have reported the same thing – that people with learning
disabilities have been much more likely to die from COVID-19 than other people.
Who gets counted as a person with learning disabilities has varied across
analyses but consistently, in each wave, people with learning disabilities have
been between 4 and 8 times more likely to die from COVID-19 than non-disabled people,
with people with Down syndrome, people in residential care homes, and
potentially people with profound and multiple learning disabilities at even higher
risk of death[1]. Whatever
learning might have happened after the first peak of COVID-19, it clearly didn’t
result in measures to reduce the risk of COVID-19 deaths among people with
learning disabilities in the second peak.
Of additional relevance now is that studies have also
reported that people with learning disabilities were more likely to be infected
with COVID-19 than non-disabled people, and that people with learning
disabilities were much more likely to be hospitalised with COVID-19 than non-disabled
people. I’ll come to potential reasons for COVID-19 infection rates being
higher for people with learning disabilities later in this blogpost. In terms
of hospitalisation, reviews of
COVID-19 deaths among people with learning disabilities analysed by the LeDeR
programme have reported that signs of acute deterioration in the health of people
with learning disabilities with COVID-19 were often not recognised by support staff.
The
LeDeR programme has also reported that 73% of all people with learning
disabilities who died in 2020 had a Do Not Attempt Cardiopulmonary Resuscitation
(DNACPR) notice on their records (compared to 71% of people in 2018 and 70% of
people in 2019), and that 71% of these DNACPR decisions were judged by a
reviewer to have been correctly completed and followed (compared to 76% in 2018
and 73% in 2019).
But COVID-19 vaccination is supposed to in effect break the
link between COVID-19 infection and deaths, and reduce the link between
COVID-19 infection and hospitalisation. It’s early days, but information
from NHS England on COVID-19 deaths among people who have been hospitalised
(not ideal, but since the LeDeR programme transferred to a different
organisation updates from this programme have been irregular) suggests that the
number of people with learning disabilities (and possibly autistic people too
in this dataset) dying from COVID-19 has so far remained low as Delta variant COVID-19
cases increase. It is, however, early days given the time lag from cases to potential
hospitalisations and deaths, and the number of people with learning disabilities
dying from COVID-19 right now is not zero (see the graph below).
COVID-19 vaccination and people with learning disabilities
Since
the JCVI grudgingly prioritised adults with learning disabilities registered
with GPs for the COVID-19 vaccine in late February 2021, there has been a
concerted effort to vaccinate adults with learning disabilities. The OpenSafely
consortium has been producing regular reports on COVID-19 vaccination rates
in different groups using records from about 40% of GP practices in England,
including quite a lot of information about people with learning disabilities. In
older groups and younger adults who have been shielding, over 90% of people with
learning disabilities have had at least one dose of the COVID-19 vaccine. Among
adults with learning disabilities aged 16-64 who haven’t been shielding, around
85% of people have had at least COVID-19 vaccine dose and 77% of people have
had both vaccine doses, although vaccination rates are lower among people aged
16-29 and among people from Black, Mixed, South Asian and Other minority ethnic
communities (see the graph below).
These vaccination rates are testament to the efforts of a huge number of people in recent months. It still leaves substantial numbers of people with learning disabilities who are not vaccinated at all, or who are only partially vaccinated, in an England where the Delta COVID-19 variant is circulating widely (wildly?) and is highly transmissible.
Extrapolating mainly from the most recent OpenSafely data, I
estimate that between 35,000 and 40,000 adults with learning disabilities registered
as such with GPs in England have not yet had a COVID-19 vaccine, and at least
16,000 people have not yet had their second dose (the table below shows my working
for those interested, but it’s in the TMI category really). And these figures
don’t include the unknown but large number of adults with learning disabilities
who are not registered as such with their GP. They also don’t include children with
learning disabilities, of which there were over
70,000 with an Education, Health and Care Plan in education in 2020.
|
|
Vaccinated |
Not
vaccinated |
Total
eligible |
Percentage
vaccinated (at least one dose) |
Extrapolated
number vaccinated (at least one dose) |
Extrapolated
number not vaccinated |
|
80+ |
497 |
28 |
525 |
94.7% |
1,243 |
70 |
|
70-79 |
2,856 |
154 |
3,010 |
94.9% |
7,140 |
385 |
|
65-69 |
2,324 |
189 |
2.513 |
92.5% |
5,810 |
473 |
|
65+ in care
homes |
|
|
|
96.2% (overall) |
6,518* |
257 |
|
16 -69
shielding |
25,025 |
1,932 |
26,957 |
92.8% |
62,563 |
4,830 |
|
16-64 |
70,483 |
12,145 |
82,628 |
85.3% |
176,208 (16,503 one dose only) |
30,363 |
|
Estimated
totals |
|
|
|
|
259,482 |
36,378 |
* Total
number of older people with learning disabilities in residential care and
nursing homes in England taken from NHS Digital SALT social care statistics
2019/20 – overall COVID-19 vaccination rate applied to these figures for
extrapolated numbers of people vaccinated and not vaccinated
COVID-19 infection risks and the lives of people with
learning disabilities
So far, the information has told us very clearly that people
with learning disabilities have been much more likely to die of COVID-19 than
other people and that this didn’t improve from the first to the second COVID-19
peak. People with learning disabilities have been much more likely to be hospitalised
with COVID-19, although treatment for people both before and after hospitalisation
is open to question. While COVID-19 vaccination rates are high among most
groups of adults with learning disabilities, it still leaves substantial and
unknown numbers of adults and children with learning disabilities not or at least
only partially vaccinated.
So, where does this leave people with learning disabilities and
those close to them as COVID-19 cases rise exponentially and restrictions to reduce
COVID-19 infection risk for everyone are withdrawn? I am a small part of a
UK-wide research project which has been listening to adults with learning
disabilities, family members and support workers through the pandemic, and today
we have released findings from interviews and surveys conducted in April and
May 2021 about the situation of adults with learning disabilities when it comes
to COVID-19 (all
the findings from this Wave of interviews and surveys can be found here). Cohort
1 involves almost 600 adults with learning disabilities across the UK who we
interviewed by Zoom/phone etc; Cohort 2 involves family members or support
workers reporting on the lives of over 250 adults with learning disabilities who
were not in a position to be interviewed, including a substantial number of
adults with profound and multiple learning disabilities. What have people told
us?
First, even in a period of lower case rates in April and May
2021, COVID-19 infection was a presence in some people’s lives. In the four
weeks before they provided us with information, 5% of people in Cohort 1 and 6%
of people in Cohort 2 had been supported by a support worker who had got
COVID-19 – in addition 2% of people in Cohort 1 and 3% of people in Cohort 2
were living with someone who had got COVID-19 in the last four weeks. Overall,
10% of people in Cohort 1 and 13% of people in Cohort 2 were reported to have had
COVID-19 at some point. This is a continuing worry for people with learning
disabilities and those close to them as COVID-19 case rates rise – national
statistics up to 11th July 2021 suggest that 76%-80% of social
care workers have had at least one dose of the COVID-19 vaccine, but only 64%
of social care workers in CQC-registered services and 31% of social care workers in other services
have had both vaccine doses.
As in previous waves, the consequences of COVID-19 infection
can be severe for people with learning disabilities. 36% of people in Cohort 1
and 76% of people in Cohort 2 were reported to have a health condition that
would be a worry if they caught COVID-19. Among those who had previously caught
COVID-19, 10% of people in Cohort 1 and 6% of people in COVID-19 had had COVID-19
symptoms for more than a month, potentially a sign of Long-COVID among
substantial numbers of people with learning disabilities. Not surprisingly, among
people in Cohort 1, 14% were worried a lot about getting COVID-19, 10% were
worried a lot to leave the house, 32% were worried a lot that family friends
getting COVID-19, and 19% were worried a lot about giving COVID-19 to someone
else.
Given the potential consequences of COVID-19, it’s not
surprising that people with learning disabilities and those around them were actively
managing this risk at home. 9% of people in Cohort 1 and 35% of people in
Cohort 2 were shielding in April-May 2021, whether they had received an
official letter or not (and of course having a shielding letter now confers no
support of any kind). For 66% of people in Cohort 1 and 45% of people in Cohort
2, others were using some form of PPE (at least face masks) when with people in
their home. There were still restrictions on visits to most people’s homes in
either cohort, whether service-imposed or voluntary restrictions by family
members to keep the person safe.
People with learning disabilities were also using face masks
when going out. In Cohort 1, although 20% of people were exempt from wearing a
face mask, 90% of people were using face masks when in enclosed spaces out of
the house, like shops or public transport. In Cohort 2, 62% of people were
exempt from wearing a face mask, but 57% of people wore face masks in enclosed
spaces out of the house.
What will the COVID-19 free-for-all in England mean for different groups of people with learning disabilities?
For adults with learning disabilities who we interviewed in
Cohort 1, surely people are more likely to be coming into contact with others
who are infected with COVID-19. Whether it’s going out to get essentials like
food and medicine (76% of people in Cohort 1 did this in the 7 days before
being interviewed), going on public transport (34% of people did this in the 7
days before being interviewed), or getting support from support workers, how
are people supposed to manage their COVID-19 risk when others around them aren’t?
What’s going to happen to people’s jobs, where they have been furloughed or
jobs have been held open for them – are people going to have to face working in
an increasingly risky environment like a supermarket, or losing their job? The
support that people had to live their lives has not returned to anything like
the levels they were before the pandemic, which even then were sketchy after 10
years of austerity in social care budgets.
For adults in Cohort 2, often with greater health needs and
need for 24-hour support, there seems to be no end in sight to continued severe
restrictions in people’s lives to try and keep people safe. As an example, in
April-May 2021 the most common reasons for people in Cohort 2 to leave the
house were to go for a drive in a private car (62% of people) or go to a park
or green space (55% of people) – will even parks now feel like high-risk places?
The risks of allowing multiple support workers into a person’s home will also only
increase (especially as there is still little to no financial support to
support workers to self-isolate). For many people with learning disabilities with
multiple health needs the decision about whether to have the COVID-19 vaccine
is complicated and nuanced, as the effects of the vaccine on a person’s health can
be difficult to predict and for some people the process of getting a vaccine
can be really difficult. Families report feelings of exhaustion and depression
after being in this situation so long, and also report that this enclosed life
is shrinking the worlds of the people they care for, while the continuing
withdrawal of vital health and social care services such as postural care is
having a substantial impact on people’s skills, health and well-being that can’t
be brought back.
In the project I’m involved in we have focused on adults,
but there are obviously children and adolescents with learning disabilities facing
similarly stark dilemmas. An announcement today (19th July) that
only ‘clinically extremely vulnerable’ children will be eligible for the
COVID-19 vaccine is extremely unlikely to cover a large proportion of children
with learning disabilities, repeating the mistakes the JCVI initially made with
eligibility for COVID-19 vaccines among adults. Even if someone got their first
COVID-19 vaccine today, it will still be a minimum of three months until the
full protective effects of a vaccine would be evident. What are families with a
child with learning disabilities supposed to do about schools, short break
services, siblings and other family members, and parental employment?
16 months on from the first COVID-19 lockdown in England,
the withdrawal of restrictions together with the late and limited vaccination
of young adults and children, while COVID-19 case rates rise exponentially and
the NHS once more goes into COVID crisis mode, does not bode well for people with
learning disabilities and those close to them. Many people with learning
disabilities and families felt abandoned and forgotten before these measures to
help reduce the risk of infection were withdrawn – and now?
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