Sunday 14 February 2021

COVID-19 vaccines and people with learning disabilities - what is actually happening?

There has been welcome increased media attention on COVID-19 vaccination and people with learning disabilities in England and across the UK, and how people with learning disabilities should as a whole group be a priority for the COVID-19 vaccine. I have previously tried to make the case for people with learning disabilities being a priority for COVID-19 vaccination in a couple of blogposts here and here, so I won't repeat these arguments here.

In this blogpost I want to look at the early signs of what is actually happening with the COVID-19 vaccination of people with learning disabilities, and what the practical prospects are of people with learning disabilities being vaccinated equitably.

First, a quick reminder. The Joint Committee on Vaccination and Immunisation (JCVI) advises the government on who has priority for COVID-19 vaccination, and the government is following this advice in its vaccination programme. The prioritisation list determined so far is below.

  1. residents in a care home for older adults and their carers
  2. all those 80 years of age and over and frontline health and social care workers
  3. all those 75 years of age and over
  4. all those 70 years of age and over and clinically extremely vulnerable individuals[footnote 1]
  5. all those 65 years of age and over
  6. all individuals aged 16 years[footnote 2] to 64 years with underlying health conditions which put them at higher risk of serious disease and mortality[footnote 3]
  7. all those 60 years of age and over
  8. all those 55 years of age and over
  9. all those 50 years of age and over

This is heavily age-based (mirroring information from the total population on the number of people who have dies from COVID-19), but gives relatively little consideration to groups of people within the population who are at higher risk of dying from COVID-19, such as people from minority ethnic groups and (as a comprehensive and grim analysis of COVID-19 deaths from the Office for National Statistics further confirmed this week) people with learning disabilities.

Existing crushing health inequalities pre-COVID already mean that people with learning disabilities were dying on average around 20 years younger than other people, meaning bluntly that relatively few people with learning disabilities make it into the older age groups that are a priority for the COVID-19 vaccine. Other analyses (for example this recent comprehensive analysis of COVID-19 infections and deaths among people with learning disabilities in Scotland) have repeatedly shown that the risk of death from COVID-19 is much higher at younger ages for people with learning disabilities compared to people without learning disabilities, with the most common age of death between the ages of 55 and 64.

Adults with learning disabilities under the age of 65 can become a higher priority for a COVID-19 vaccination in two ways. 

First, if a person is judged to be Clinically Extremely Vulnerable (determined by a list of particular medical conditions, but doctors can use their clinical judgement) then they should be in priority group 4 (with people aged 70 or over). People with Down syndrome are all included in this group, as there is some evidence of higher risks in this group of people, and other people with learning disabilities with one of the medical conditions listed would also be included.

Second, if a person has an 'underlying health condition which put them at higher risk of serious disease and mortality' then they should be in priority group 6, which is after everyone aged 65 or over but before people aged 60-64. Again there is a list of health conditions, but doctors can use their clinical judgement to decide who is in this priority group. People with learning disabilities (particularly at ages under 65) are more likely to have one or more of the underlying health conditions listed, but we don't how how people overall would be included on these criteria. An important 'underlying health condition' added to its list by the JCVI is people with 'severe and profound learning disabilities'. 

Many people have rightly pointed out that this COVID-19 vaccination prioritisation strategy will miss out large numbers of people with learning disabilities aged under 65 (the issue of children is also urgent and not really considered), who are likely to be at higher risk of serious consequences of COVID-19. Many people have also pointed out multiple potential practical problems with implementing the vaccination priorities that exist, to the likely detriment of people with learning disabilities.

Before going through some of these practical problems, let's look at some early evidence of what's happening with COVID-19 vaccinations in the top age-related priority groups, produced with amazing speed by the OpenSafely collaboration. They are producing a weekly report of the scale of COVID-19 vaccinations in different age groups as the COVID-19 vaccination cranks up, based on substantial numbers of people in primary care records. This allows them to break down COVID-19 vaccine coverage among different groups over time, including people with learning disabilities (intellectual disability in the parlance the group uses).

So, among people aged 80+ who are not living in care homes, by the 4th February 86.5% of people overall had received the COVID-19 vaccine. There is a substantial vaccination gap, however, between people with learning disabilities (where 75.3% of people identified as such on GP records had received the COVID-19 vaccine) and other people (86.6%). The graph below shows the cumulative vaccination rate for people with and without learning disabilities overtime - the vaccination gap has been fairly consistent from the start, and vaccination rates are slowing down for both groups.


The same information is available for people aged 70-79 not in care homes (which started a little later and has more people to vaccinate). By 4th February, 59.7% of people aged 70-79 overall had received the COVID-19 vaccine. The vaccination gap for people with learning disabilities vs other people is even bigger than for people aged 80+ (46.2% for people with learning disabilities versus 59.8% for other people). The graph below shows that this has only recently opened and has widened very quickly.


As far as I know, this is by far the best (the only?) information we have on how people with learning disabilities are actually faring when it comes to getting a COVID-19 vaccine. These vaccination gaps are particularly worrying to me because they are happening in age groups where people are obviously registered with their GP and identified as a person with learning disabilities (otherwise they wouldn't be in the dataset), where there aren't that many people with learning disabilities to vaccinate, and where a comprehensive population-based COVID-19 vaccination programme is supposed to be happening.

What is going to happen with people with learning disabilities at younger ages, where eligibility decisions need to be made in terms of prioritising people with learning disabilities for COVID-19 vaccinations (or not)? 

A major issue here is that GP's health records are unlikely to reliably identify people with the 'conditions' that would qualify them for inclusion in the CEV or underlying health conditions list that confer higher priority for the COVID-19 vaccine. From 2018 onwards, there has been a major programme of reconfiguring how people are recorded in GP health records, from 'Read' codes to SNOMED codes (see this guidance document relating to making the changes for people with learning disabilities). This is important and necessary work (not least to remove some of the grossly offensive terms related to learning disabilities that were still present in health systems), but it takes time, is mind-blowingly complicated, is likely to be uneven in where and how well the changes are being made, and can result in people with learning disabilities getting lost from as well as added to GP health record systems. Out of this SNOMED soup the recording of Down syndrome, let alone 'severe or profound learning disability', is I believe in no way at a point to underpin a robust vaccination programme.

This is evident in the guidance being sent to GPs, and evidence that different areas and different GP practices are making very different decisions about prioritising people with learning disabilities for COVID-19 vaccines.

The text below was shared on Twitter by Edel Harris, the CEO of Mencap (no link was provided and I have not been able to find it on the web), as a guidance letter being sent to GPs. [UPDATE: Stuart Outterside has very kindly provided the link for this letter, which is here - the information about people with learning disabilities is in Annex B https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2021/02/C1124-Vaccination-of-cohorts-5-6-and-additional-funding-for-residential-settings-13-Feb-2021-1.pdf ). I read this guidance as acknowledging that GPs don't have the information on their health records to reliable identify people with severe and profound learning disability, and basically shrugs its shoulders and tells GPs to do whatever they think is right in their local area.


This guidance letter perfectly illustrates the worst fears of me and many other people about trying to apply current JCVI advice in the real world. First, the lack of reliable health records information means that a huge amount of pointless effort amongst health service personnel will go into gatekeeping who amongst people with learning disabilities will be deemed a priority for a COVID-19 vaccine. Second, it places a huge onus on families, friends and others supporting people with 'severe and profound learning disability' to actively come forward and make a case, at a time when GPs are even more stretched than usual. Third, it will still ignore people with learning disabilities who aren't deemed to be part of this group, and this whole gatekeeping farrago will be replicated for every other underlying health condition. Fourth, it relies on GP practices to step up and do the right thing, and all the evidence we have (for example on annual health checks) points to huge variations in how GPs treat people with learning disabilities. 

It seems that some GPs are stepping up and taking matters into their own hands in vaccinating younger people with learning disabilities, including my niece, for which I'm profoundly grateful. I've also seen that some Clinical Commissioning Groups (I think I've seen Oxfordshire, and Kent and Medway, although I'm sure there are others that I have not heard about) have taken a decision to include adults with learning disabilities in higher priority groups for the COVID-19 vaccination.

Taken together, this confusion, uncertainty and reliance on ad hoc local decision-making are the perfect conditions for existing inequalities to widen even further. We can see from the OpenSafely data that vaccination gaps are already appearing for people with learning disabilities, even when defining and finding the groups of people with learning disabilities should be relatively straightforward. Rather than draining everyone's energy with gatekeeping policing, why not aim to vaccinate everyone with learning disabilities as a priority and concentrate on the practical actions that will matter in closing the vaccination gap?