In this post Jane Bernal and Stuart Todd (University of South Wales) and Adam Watkins (Improvement Cymru) answer some questions concerning a report from Improvement Cymru -  ‘COVID-19-related deaths in Wales amongst People with Learning Disabilities from 1st March to 26th May 2020'

Who is this report about?

This report looks at a population of people with learning disabilities living in Wales.  It is not about everyone with a learning disability in Wales.  It is only about people who had been admitted to NHS hospitals at any time in the past 10 years or so. This is about 15,000 people with learning disabilities in that time period.

What did Public Health Wales want to know?

How many people with learning disabilities might have died because of Covid19.  Whether those 15,000 people with learning disabilities were more likely to die with Covid19 than in the wide population. To do this, they look to see how many of those 15,000 people had died and whether Covid19 was mentioned on the death certificate.

This report is on the impact Covid19 has had on the deaths of people with learning disabilities in Wales. Does it cover everyone with learning disabilities in Wales who might have died of Covid?

The short answer is no.  The group of people with learning disabilities had all been admitted to hospital at some time in their lives  and a health care professional had recorded that they had learning disabilities, or a condition, such as Down syndrome, that is known to cause learning disabilities. If nobody spotted that they had learning disabilities, they would not be included. Some of the group may have been born in hospital and never been admitted since but most were people who at some stage had a health problem serious enough for them to come into hospital. So they may have had more obvious disabilities and were in less good health than everyone in Wales with a learning disability. They were probably more likely to have more severe learning disabilities and have other health problems.

Did Covid lead to extra deaths in people with learning disabilities in this time  period?

The data seem quite clear. There were more deaths among this population in the spring of 2020 than in the same months in any of the previous four years. In recent years there were, on average, around 90 deaths between January and the end of May. In 2020, 123 people had died in that period. That number was higher than for any of the previous years.  This graph from the report shows this.

The different colours represent different causes of death.  The red colour represents deaths from Covid19.    You can see almost immediately that Covid19 is nearly responsible for all the additional deaths in those months in 2020.  Covid19 was mentioned as the underlying cause of death for 31 people with learning disabilities.   Most of the additional deaths seen in this time period were related to Covid19. More people with learning disabilities died in those months in 2020 than in the same months in previous years.    Sadly, that means that even more families and communities in Wales than before have been and will be mourning the death of someone with learning disabilities.

Did the report find that those people with learning disabilities were at greater risk of dying of Covid19 than other people in Wales?

That's a great question!  What the report says is that in this group of people with learning disabilities there was a greater risk of dying at any age, and from any cause, including Covid 19.  Because there are not that many people with learning disabilities, the number of deaths was small. This makes it harder to work out exactly how much greater the risk was for people with learning disabilities. When we look at the proportion of deaths in this time period where Covid19 was mentioned on the death certificates then about a quarter of deaths in this group of people and the for all Welsh resident was probably due to Covid19.  Thus if we look at proportion of deaths related to Covid19, they are surprisingly similar for both groups, as shown in the graph below.

So there were more people with learning disabilities dying from Covid 19 and other conditions than in the wider population BUT the proportion of deaths in each population from Covid-19 were similar.

Come again? People with learning disabilities were at more risk of dying from Covid 19 than the whole population but the proportion of deaths said to be caused by Covid were similar in the two groups?

Yes, that’s right. You might have thought the proportion of deaths would be higher in people with learning disabilities, but that does not seem to be the case, probably because people with learning disabilities are generally at higher risk of dying at a younger age from many causes, not just COVID19.

Apart from the presence or absence of learning disabilities, are the two populations the same in terms of their age and health?

The in group with learning disabilities will have been younger than the whole population of Wales, because people with learning disabilities tend to die at a younger age, so there will be fewer old people with learning disabilities.  We have put together a population pyramid below to show this.   You can see there is a smaller proportion of people with learning disabilities aged over 65 years than in the general population.  There is a greater proportion of people with learning disabilities aged 20-35 years of age.  So the population of people with learning disabilities is younger than the wider population Wales.

There is another important difference between these two groups.  The group with learning disabilities had all needed to be in hospital at some point.  That is how they were identified for this report.  Obviously that is not true for everyone in Wales. In any case we already know people with learning disabilities are more likely than other people to have health problems, particularly epilepsy and respiratory infections. They are also more likely to have more than one health condition.

Why are those difference important?

On the one hand, if Covid19 is particularly likely to affect older people, the fact that the population with learning disabilities is younger might reduce their risk of dying of the virus. At the same time higher rates of underlying health problems might increase the risk, as might inequities in the availability of effective treatment. People with learning disabilities are also more likely to live in group settings in supported living or care homes, which means they may be more likely to be exposed to Covid19, whether or not it proves fatal. However, this would be on a much smaller scale than people living in care homes and nursing homes since the numbers living there are much larger.

So why have more people with learning disabilities died of Covid19 than the Welsh population generally if they are actually younger?

This data cannot tell us that.  State of health and not age may be the decisive factor.  People with learning disabilities probably acquire some of the illnesses otherwise associated with old age when they are a bit younger. They may have not had equitable access to effective health care. Care settings for groups of people would have had carers needing to come and go during lockdown.  This might also increase infection risk.  But remember the number of deaths reported here was quite low.  So we can’t be certain.  People with learning disabilities, at all ages probably, have a higher risk potentially of dying from COVID19.

Does this report say much about the circumstances of death for people with learning disabilities who died of covid19?

No. The report simply compares two sets of numbers that were already being routinely collected. 20 of the 31 deaths of people with learning disabilities happened in hospital. The remainder happened in care settings.  Not everyone who died  in hospital had been living in a care setting.  So family members and care staff were supporting about one in three of the people with learning disabilities who died with Covid19.  They were effectively providing end-of-life care and many might not be used to doing this.  We should try and find out how they felt about this and well supported they were.  We. can only find out from having conversations with people who were involved.

This is an account of what was happening in Wales for some people with learning disabilities. What about other countries in the UK?

It is hard to answer that question because each part of the UK has tried to find out in a different way, as Appendix C of the report helpfully summarises. The ONS data from England includes only hospital deaths, and the Learning Disabilities Mortality Review only knows about deaths that are reported to them. So we know how many deaths, but not the size of the population in which they occurred.  If you wanted to know how some people are making sense of what has been happening to people with learning disabilities in England you could  start by following Chris Hatton’s blog pages

And in addition, Public Health England have also just produced their account of the deaths of people with learning disabilities in England during the pandemic. You can read this here

How can we find out what happened to ALL people with learning disabilities in Wales during  COVID19?

We can’t in a single study, because there is not a single place that lists everyone who has a learning disability. This report gives us the first glimpse of what might be happening in Wales.  There are other ways to try to get a good estimate, and the report helpfully describes some of these in Appendix B.

Most GP practices in Wales keep a register of people with learning disabilities under their care, but these registers aren’t shared with Public Health Wales. Some of those GP practices provide data to the Swansea University Sail Databank, which would give researchers access to data (without personal details so as to maintain anonymity) on people who their GPs record as having learning disabilities. Some early work with the Sail Databank suggests that about half of the people identified from hospital admissions are also on GP registers.  So there is some overlap there.  But this also means that many people on GP databases are not in this 15000 population.  They might have a different health profile again.  It would be useful to find this  out.

We could ask care providers in Wales to tell us about deaths among the people they support. Of course that would not tell us about the deaths of people who lived alone or with their families.

We could also ask the health boards in Wales to tell us about deaths among the people who use specialist services, but many people with learning disabilities do not use these services. This week saw the publication of a descriptive article looking at 66 deaths from Covid of people who were known to Consultant Psychiatrists or learning disability services. COVID-19 deaths in people with intellectual disability in the UK and Ireland: descriptive study Crossref DOI link: https://doi.org/10.1192/BJO.2020.102 

Studies of this kind can identify characteristics of the people who died, but not necessarily identify risk factors in even that population, let alone among all people with learning disabilities.  There is not a single way of getting the information, but combining different approaches might give a clearer answer.

What does this report mean for policymakers and services in Wales?

In the first place that it is still important to think about premature deaths in people with learning disabilities. This report reminds us that people with learning disabilities are at a higher risk of dying, at any particular age, than other Welsh citizens, and not only from Covid19. Covid19 has magnified this.  The majority of the deaths of people with learning disabilities in this time period were not from Covid19.  Looking at the reasons why people with learning disabilities die younger is still hugely important.   The Improving Lives agenda remains important, even though Covid19 adds additional challenges and complexities. For example making sure people can still have annual health checks and have equitable access to urgent, routine, and specialist appointments. Immunisation against ‘Flu and Pneumonia are more important this year than ever.

The report also makes it clear that people with learning disabilities do have a heightened risk of dying from Covid19.  People with learning disabilities at younger ages than in the general population will have a higher risk of dying from Covid19.   So infection control measures are important. There is a tension between the restrictions this can pose and the rights people have to enjoy meaningful social relationships and a family life. It would be useful to understand more about the restrictions imposed on people with learning disabilities across Wales to hear their views about their experiences and how these could be used to lessen their negative impacts without hugely effecting the risk of death.

Thanks for answering some of our questions.  What can I do if want to ask more questions or talk more about some of the points  raised- You can contact Stuart on [email protected]