Saturday, 28 March 2020

Potential risk factors for the impact of COVID-19 on health: People with learning disabilities


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.

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.

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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