Potential risk factors for the impact
of COVID-19 on health: People with learning disabilities
In this blogpost I want to set out some evidence related to
people with learning disabilities and the potential impact of COVID-19 on
people’s health. This is a separate issue from which factors might influence
the likelihood of people with learning disabilities getting infected with
COVID-19 – this blogpost is about the extent to which people with learning
disabilities have co-occurring health issues that make the impact of COVID-19
potentially more serious.
The UK government has set out a list of groups which it
considers to be at greater risk in terms of the potential impact of COVID-19 on
people’s health, recommending that people in these group exercise social
distancing and for some conditions self-isolation[1].
People with learning disabilities are included as a blanket group in this list
as an example of a ‘chronic neurological condition’. There has also been more
recent guidance[2]
where “people defined on medical grounds as extremely vulnerable from COVID-19”
have been advised to ‘shield’ themselves in self-isolation for 12 weeks – the
list of medical conditions do not explicitly include people with learning
disabilities as a blanket group.
How many people with
learning disabilities are there in England?
People with learning disabilities as a whole are a big and
very diverse group of people. The most recent estimate of the total number of
people with learning disabilities in England, derived from 2015 figures and
estimates[3],
was almost 1.1 million people (1,087,100 people). Most people (930,400) were
adults, with over three-quarters (77%) likely to be not known as such to health
or social care services. In 2020 that overall number is likely to be bigger[4],
although education and adult social care services have not kept pace with the
increasing numbers and needs of some groups of people with learning
disabilities[5].
In terms of people with learning disabilities recognised by
services to the point of getting some form of meaningful support, in 2018 there
were 67,765 children with an Education Health and Care Plan and a label
suggestive of learning disabilities (Moderate Learning Difficulty – 28,241
children; Severe Learning Difficulty – 29,492 children; Profound Multiple
Learning Difficulty – 10,032 children)[6].
In 2018/19 there were 133,575 adults with learning
disabilities aged 18-64 and 17,045 adults with learning disabilities aged 65+
getting some form of long-term social care, a total of 150,620 adults. In
2018/19 a larger number of 297,174 people with learning disabilities of all
ages were registered as a person with learning disabilities with their GP[7].
What are the
potential risk factors for COVID-19 potentially having a greater impact on the health
of people with learning disabilities?
There is still a lot of uncertainty about what might be
linked to having a poorer reaction to COVID-19 if you catch it. It is also
really important to say that we are talking about probabilities here for groups
of people – it you are in a group at greater overall risk that does not at all
guarantee that you will have a worse reaction to COVID-19 (and being in a low
risk group does not guarantee that you will have a better reaction).
Based on the list of provided by the UK government in its
social distancing guidance, what do we know about how common these risk factors
are amongst people with learning disabilities?
Age – the general message seems to be that older people are
more susceptible to COVID-19. Because of a range of factors, including how
people with learning disabilities can be treated (or mistreated, or not
treated) by health services[8],
there are proportionally fewer people with learning disabilities in older age
groups although (thankfully) the number of older people with learning
disabilities has been increasing. For some groups of people with learning
disabilities potential risk factors will be present either from birth or from
an earlier age than the population generally, so younger people and those
supporting them as well as older people should be getting the best support and
healthcare.
There is also an emerging picture that more men than women are
more likely to become more ill with COVID-19. A consistent international
finding is that more men than women are identified with learning disabilities.
[Added 30/3/2020]. Finally, smoking appears to be associated with more serious consequences of COVID-19. Although good evidence on rates of smoking amongst people with learning disabilities is scarce, it appears that people with learning disabilities who are eligible for and using long-term social care support may be less likely to be smokers than the general population, whereas people with learning disabilities (including adolescents) who are less likely to be eligible for long-term social care support may be more likely to be smokers than the general population.
[Added 30/3/2020]. Finally, smoking appears to be associated with more serious consequences of COVID-19. Although good evidence on rates of smoking amongst people with learning disabilities is scarce, it appears that people with learning disabilities who are eligible for and using long-term social care support may be less likely to be smokers than the general population, whereas people with learning disabilities (including adolescents) who are less likely to be eligible for long-term social care support may be more likely to be smokers than the general population.
People with learning
disabilities registered with GPs
From 2014/15, NHS Digital every year has been publishing
information from around half of GP practices in England, comparing people with
and without learning disabilities on what GPs record about people’s health and
selected aspects of their treatment. Although geographical coverage is patchy, you
can also get detailed information area by area[9].
Overall, it is important to say that this database is reporting that people with
learning disabilities are 4 times more likely to die than people without learning
disabilities of the same age and sex.
What does this database (and research, much of which is
summarised by Public Health England here[10])
say about whether people with learning disabilities are more or less likely
than other people to experience the risk factors associated with ‘vulnerability’
to COVID-19? Overall, the general pattern is that people with learning
disabilities are more likely to experience a range of risk factors at younger ages
than other people, but are less likely to be living long enough to experience
risk factors or health conditions that are common amongst over-75s.
Respiratory conditions are obviously an important risk
factor in relation to COVID-19. The GP database reports:
·
Asthma: overall 9.2% of people with learning
disabilities vs 5.8% of other people, with asthma more common amongst people
with learning disabilities in all age groups up to 64 years old.
·
Chronic Obstructive Pulmonary Disease (COPD):
overall 1.2% of people with learning disabilities vs 1.8% of other people, but
more common amongst people with learning disabilities in age groups 35-54
years.
It is absolutely crucial to note that respiratory diseases,
particularly pneumonias including aspiration pneumonia, are possibly the
leading cause of death for people with learning disabilities and are much more
common amongst people with learning disabilities than amongst other people[11].
[Added 30/3/2020, after a prompt from Jane Bernal.] People with Down syndrome are more likely than people with learning disabilities generally to experience more serious consequences of respiratory infections.
[Added 30/3/2020, after a prompt from Jane Bernal.] People with Down syndrome are more likely than people with learning disabilities generally to experience more serious consequences of respiratory infections.
One of the major risk factors for aspiration pneumonia is
dysphagia (problems with swallowing), which is not on the government’s list of ‘vulnerabilities’
but is common amongst people with learning disabilities and increases with age.
GP recording of dysphagia amongst people with learning disabilities is
improving but still only stands at 5.8% of people, where research suggests a
much higher rate of around 14%[12].
Related health issues that are not in the government list but are an issue for
many people with learning disabilities are constipation (GPs report this for
13.1% of people with learning disabilities, but research suggests much higher
rates of constipation, and unrecognised constipation can have fatal consequences)
and Gastro-Oesophageal Reflux Disease (GPs report this for 9.8% of people with
learning disabilities).
Another major set of risk factors concerns the heart and
circulatory system. The GP database reports:
·
Heart failure: overall 1.0% of people with
learning disabilities vs 1.0% of other people, but heart failure is more common
in people with learning disabilities in all age groups up to age 74 years.
·
Coronary heart disease: overall 1.1% of people with
learning disabilities vs 2.8% of other people, largely because CHD is far more
common amongst older people.
·
Hypertension: overall 9.8% of people with
learning disabilities vs 12.8% of other people, but hypertension is more common
amongst people with learning disabilities aged 25-54 years.
·
Stroke or Transient Ischemic Attack: overall
1.6% of people with learning disabilities vs 1.6% of other people, but stroke
or TIA is more common amongst people with learning disabilities of all ages up
to age 74 years.
Again, circulatory diseases are a leading cause of death
amongst people with learning disabilities[13].
A range of other ‘vulnerabilities’ including the following,
as reported by the GP database:
·
Type 1 diabetes: overall 0.8% of people with
learning disabilities vs 0.4% of other people, more common amongst people with
learning disabilities up to the age of 74 years.
·
Non-Type 1 diabetes: overall 7.0% of people with
learning disabilities vs 4.8% of other people, more common amongst people with
learning disabilities at all ages.
·
Cancer: overall 1.6% of people with learning
disabilities vs 2.8% of other people, but more common amongst people with
learning disabilities at all ages up to age 44 years.
·
Chronic Kidney Disease: overall 2.9% of people
with learning disabilities vs 3.0% of other people, but CKD is more common
amongst people with learning disabilities from age 25 to 74 years.
·
Being seriously overweight: in the government guidelines
a Body Mass Index of 40+ is stated as a ‘vulnerability’ factor. The GP database
only reports on people with a BMI of 30+ - this reports 37.5% of people with
learning disabilities with a BMI of 30+ vs 30.1% of other people, with these
BMIs more common amongst people with learning disabilities at all ages up to 54
years.
Although definitions vary, it is clear that ‘multimorbidity’
(experiencing more than one long-term health condition) is much more common amongst
people with learning disabilities, beginning at much earlier ages than the
general population.
People with profound
and multiple learning disabilities in England
Although there is much less evidence than there should be,
it is clear that people with profound and multiple learning disabilities are
much more likely to experience the risk factors for susceptibility to COVID-19
than other groups of people with learning disabilities. In England, this is
estimated to be 10,969 children in schools[14]
and 18,925 adults[15].
The kind of information I’ve described above from GPs is not
available specifically for people with profound and multiple learning
disabilities, and even international research evidence on the health of this
group of people is lacking. A review of the international research evidence[16]
could not always produce overall estimates of health conditions because the
research evidence was too diverse, but it reports the following for people with
profound and multiple learning disabilities:
·
21% of people with profound and multiple
learning disabilities experience respiratory disease.
·
30% of people with profound and multiple
learning disabilities experience dysphagia.
·
Much higher rates of cardiovascular health
problems and hypertension.
Issues that are particularly important for people with
profound and multiple learning disabilities, such as tube feeding and much
higher rates of epilepsy[17]
(which is much more common in people with learning disabilities generally
compared to other people, with GPs reporting 17.3% of people with learning
disabilities experiencing epilepsy compared to 0.6% of other people), are not
listed as ‘vulnerability’ factors but are likely to be really important for
this group of people.
COVID-19 and people
with learning disabilities – redressing an injustice or making it worse?
The evidence is clear that people with learning disabilities
are more likely to experience a range of health conditions associated with a
greater likelihood of a more severe reaction to COVID-19 infection. Even when overall
rates of a particular health condition are similar between people with and
without learning disabilities, people with learning disabilities are more
likely to be experiencing these conditions are earlier ages. There are also
particular groups of people with learning disabilities at particularly high
risk of having a poor reaction to COVID-19.
Extensive research
also shows that people with learning disabilities, as a group, experience
systematic inequities when it comes to health – both in experiencing the social
and economic conditions likely to result in poorer health, and in the
(non-)response of health services to people’s health needs[18].
Now, when it really matters, there is an opportunity to begin to redress this
injustice. Is everything possible being done to support people, families and
support services such that the risk of COVID-19 infection is as low as possible? And if people
do contract COVID-19 is everything being done to ensure that people and
families are properly informed and supported to make decisions, starting with
the assumption that health services will do everything they can to treat
people? I among many, many others are concerned that scarcity of health
services (itself the consequence of political choices) is potentially being
used, in the cloak of clinical prioritisation, as a rationale for further discrimination
against ‘vulnerable’ groups, including people with learning disabilities. Time
to step up and show we’re better than that.
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