Pushing the rock back up the hill - the autumn COVID booster vaccine and people with learning disabilities

For a long time now, there has been disquiet rising to desperation among people with learning disabilities and those close to people who have been trying to organise a fourth autumn COVID vaccine. Even among people with learning disabilities who have received three doses of the COVID vaccine so far, many people are reporting a real resistance among GPs and other health professionals to provide a fourth dose as part of the autumn COVID booster programme. As far as I know (and I've been a bit out of the loop for a while), I haven't seen any announcement by the JCVI (the Joint Committee on Vaccination and Immunisation) or the Department of Health and Social Care that all people with learning disabilities identified as such on GP registers will be prioritised for the autumn booster programme.

This really matters, particularly as waves of new COVID variants continue to hit and health services continue to crumble in the face of sustained impossibilities. While the vastly increased risk of death from COVID-19 amongst people with learning disabilities (particularly, but not exclusively, among people with Down syndrome) has been much reduced by COVID vaccines, people with learning disabilities are continuing to die from COVID-19. The graph below shows the weekly figures from NHS England for people flagged in health services in England as a person with learning disabilities or an autistic person dying in hospital from a confirmed COVID-19 diagnosis. This will substantially underestimate the number of people who have died from COVID-19, but with NHS England stopping monthly reports of deaths from the LeDeR programme it is now all we have. Even this underestimate reports that 186 people with learning disabilities and autistic people have died from COVID-19 in 2022 - that's more than 5 people every week. As people get older, and develop more or worsening health conditions (particularly given the current state of health services and the cumulative consequences of the withdrawal of health and social care support for many through the pandemic), waning vaccine effectiveness over time and new COVID variants could be an increasingly dangerous combination.

Before looking at what we know about COVID-19 vaccine coverage amongst adults with learning disabilities (I haven't found any reliable statistics relating to children with learning disabilities) it is crucial to say that, for various reasons, there are some people with learning disabilities for whom vaccination is not an option. This is likely to include many people who are at increased risk of serious and life-threatening consequences if they were to catch COVID-19, and for whom the complete withdrawal of sensible public health consequences to reduce COVID-19 case rates generally, alongside the near complete withdrawal of COVID testing and confusion over how to access anti-viral medications, has resulted in some people and those close to them living under conditions of virtual house arrest for well into a third year.

Bearing this in mind, what do we know about how many adults with learning disabilities have had at least one dose of the COVID-19 vaccine, and how many so far have had three doses?

Up until 22nd June, the OpenSafely platform, based on records from around 40% of GP surgeries in England, provided regular, detailed statistics on COVID-19 vaccine coverage, including information on various groups of adults with learning disabilities identified as such on GP registers. Since June 2022 they have stopped published regular updates, so from this source June is the most recent data we have.

The graph below shows the percentage of people with and without learning disabilities in older and at risk ('shielding') categories who had received at least one COVID-19 vaccine dose by 22 June 2022. Well over 90% of people with and without learning disabilities in these groups had received at least one COVID-19 vaccine dose.

The following graph shows a detailed breakdown of vaccine coverage among non-shielding adults with learning disabilities aged 16-64, according to sex, age band and ethnicity. While the overall rate of people getting at least one COVID-19 vaccine dose is approaching 90%, there are huge inequalities in vaccine coverage by ethnicity and age.

What do these percentages mean in terms of the number of adults with learning disabilities in England who have (and have not) received at least one dose of the COVID-19 vaccine? The table below shows my best guess at this number, mainly scaling up from the 40% of GP registers reported by OpenSafely. Overall, this produces an estimate that over 278,000 adults with learning disabilities have had at least one COVID-19 vaccine dose, and over 30,000 adults have not been vaccinated at all. 

OpenSafely – first dose vaccinations up to 22 June 2022 (40% of GP practices) of adults with learning disabilities

	Vaccinated	Not vaccinated	Total eligible	Percentage vaccinated (at least one dose)	Extrapolated number vaccinated (at least one dose)	Extrapolated number not vaccinated
80+	518	21	539	96.1%	1,295	53
70-79	2,996	133	3,129	95.7%	7,490	333
65-69	2,485	175	2,660	93.4%	6,213	438
65+ in care homes				96.7% (overall)	6,344*	216
16 -69 shielding	25,319	1,512	26,831	94.4%	63,298	3,780
16-64 (not shielding)	77,427	10,367	87,794	88.2%	193,568	25,918
Estimated totals					278,208	30,738

* Total number of older people with learning disabilities in residential care and nursing homes in England taken from NHS Digital SALT social care statistics 2020/21 – overall COVID-19 vaccination rate applied to these figures for extrapolated numbers of people vaccinated and not vaccinated

 There is also information published weekly by NHS England from the National Immunisation Management System, based on GP register data across England. They report on the number of 'at risk' people or carers aged 16-64 identified as a person with learning disabilities on GP registers who have had COVID-19 vaccinations. Up to 31st July 2022, this dataset reports that 239,727 people (88.9%) had received at least one COVID-19 vaccine dose and 30,059 people had not had a COVID-19 vaccine - the figures don't exactly match up but they are in the same ballpark as the estimates in the table. This dataset also reports big variations in COVID vaccine coverage for 'at risk' adults with learning disabilities aged 16-64 across English regions - more people in the South West (92.2%) and the South East (91.4%) had received at least one vaccine dose compared to people in the North West (87.5%) and London (82.2%).

So, while overall the vast majority of adults with learning disabilities in England have had at least one dose of the COVID-19 vaccine, over 30,000 adults have not had a vaccine dose and there are big variations according to age, ethnicity, and where the person lives in England. One dose of the COVID-19 vaccine can be the result of a one-off effort - three doses require a functioning vaccine system on a more sustained basis. Using the same sources of data and formats as the information above for at least one dose, how many adults with learning disabilities have had three doses of the COVID-19 vaccine?

The graph below, from OpenSafely data, shows that for people aged 65+, 83% to 88% of people with learning disabilities had had three COVID-19 vaccine doses, typically 4%-5% lower than people without learning disabilities. 'Shielding' (probably equivalent to 'Clinically Extremely Vulnerable' people) people with learning disabilities aged 16-69 had been vaccinated with three doses at a higher rate than people without learning disabilities (82.8% vs 76.9%).

Amongst non-shielding adults with learning disabilities aged 16-64 (see the graph below) the inequalities in three dose vaccine coverage by ethnicity, age and to a certain extent sex are even more stark. Only 40.1% of Black people, compared to 72.5% of White people, had received three vaccine doses. Only 29.1% of people aged 16-17 had received three vaccine doses, reflecting the cumulative consequences of earlier JCVI decisions not to vaccinate children and young people. As people move up through the age bands, the consequences of lower vaccination rates among younger people early on is resulting in the overall percentage of adults with learning disabilities getting three vaccine doses going down, if anything, rather than going up.

Using the same guessing methods as before, the table below shows that I estimate over 220,000 adults with learning disabilities in England have had three vaccine doses, and over 80,000 adults with learning disabilities have not had three COVID vaccine doses.

OpenSafely – third dose vaccinations up to 22 June 2022 (40% of GP practices) of adults with learning disabilities

	Vaccinated (three doses)	Not vaccinated with three doses	Total eligible	Percentage vaccinated (three doses)	Extrapolated number vaccinated (three doses)	Extrapolated number not vaccinated with three doses
80+	476	63	539	88.3%	1,190	158
70-79	2,716	413	3,129	86.8%	6,790	1,033
65-69	2,219	441	2,660	83.4%	5,548	1,103
65+ in care homes				89.3% (overall)	5,858*	702
16 -69 shielding	22,218	4,613	26,831	82.8%	55,545	11,533
16-64 (not shielding)	61,096	26,698	87,794	69.6%	152,740	66,745
Estimated totals					227,671	81,274

* Total number of older people with learning disabilities in residential care and nursing homes in England taken from NHS Digital SALT social care statistics 2020/21 – overall COVID-19 vaccination rate applied to these figures for extrapolated numbers of people vaccinated and not vaccinated

The national NHS England/NIMS data I mentioned earlier reports that 194,028 'at risk' adults with learning disabilities aged 16-64 have had three COVID vaccine doses, and 75,758 people have not had three vaccine doses. Again, there are big regional variations - the South West (79.0%) and South East (77.6%) again report much higher rates than the North West (68.7%) and London (61.5%).

So, for me at least, there is compelling case for a sustained vaccination effort for people with learning disabilities across England, both to address existing inequalities in first dose vaccine coverage and to get as many people as possible to a point where they have the maximum vaccine protection possible for them. What are the prospects of this happening? After all, there have been sustained vaccination efforts earlier in the pandemic.

The first major issue for me is that the general infrastructure for delivering COVID-19 vaccines has been largely dismantled in England. This graph below, one of many from the excellent gov.uk COVID-19 vaccination website, shows how many 1st, 2nd and 3rd doses have been delivered, day by day, up to 16th August 2022. The different waves of 1st, 2nd and 3rd doses delivered can be clearly seen, but from March 2022 onwards there has been relatively little COVID vaccine activity. With both community and hospital-based health services overwhelmed, waiting times growing, and COVID-19 vaccination centres dismantled, it is unclear where the capacity for another major vaccination effort will come from. This applies doubly to the learning disability health service professionals who provided specialist support for people with learning disabilities to get their COVID-19 vaccines - these relatively scarce professionals were withdrawn from ongoing and much-needed health support for people with learning disabilities whose health needs have increased in their absence. Social care support staff shortages are also going to have an impact.

The second major issue for me is the attitude and stance of the JCVI itself, which throughout the COVID-19 pandemic has adopted a narrowly clinical stance and has shown a resistance to publicly change its guidance. To my mind, this has resulted in precisely the ambiguous mess that we are in now when it comes to prioritising people with learning disabilities for an autumn COVID-19 booster.

In the first fight over vaccine prioritisation in early 2021, the JCVI adopted a stance that, based on clinical evidence, only people with Down syndrome (and, at a pinch, people with severe and profound learning disabilities) should be prioritised for the COVID-19 vaccine. [There is a critique to be made of the evidence they used to drawn this conclusion, but I will spare you that now.] When it was pointed out to them that there was no practical way of reliably identifying these specific groups of people within GP registers, they came up with this formulation in their letter of 23rd February 2021 to the Secretary of State for Health (any errors are in the original):

"On review, JCVI agreed with its earlier conclusions from the PHE and LedeR reports that mortality among individuals with learning disability most likely reflected those with more severe forms of disability, including Downs’ syndrome, those at higher risk of exposure because they were in residential or nursing care, those in older age groups, and those more likely to have other underlying health conditions which place them at higher risk from COVID-19. It is expected that individuals with more severe learning disabilities are more likely to be on the GP Learning Disability Register, as suggested in the PHE report. However, because of concerns about the coding of learning disability on GP systems, particularly with regard to the coding of severity of any disability, JCVI asked the OpenSAFELY team to look at mortality and morbidity in those with various code sets for learning disabilities on GP systems and to include data from wave 2 of the pandemic. The updated analysis confirmed high mortality and morbidity in those on the GP register, even after controlling for place of residence.

JCVI therefore agrees with the current operational plan to use the PRIMIS specification, which identifies all of those on the GP Learning Disability Register plus those with codes for other related conditions, including cerebral palsy, to be invited for vaccination in priority group 6 (unless already in priority group 4, such as those with Down’s syndrome). The committee also recognised that some severely affected individuals would not be coded at all on GP systems, and supported the planned approach to work with local authorities to identify those in residential and nursing care, and those who required support, for example as part of assisted living in the community, and those in shared accommodation with multiple occupancy, to ensure this population could be offered vaccination."

Or, as succinctly summarised in the response letter from the Minister:

"Thank you for your letter on 23 February 2021 from the Joint Committee on Vaccination and Immunisation (JCVI) on COVID-19 vaccination in cohort 6 of people with learning disabilities. I note that your clinical view remains that those at greatest risk are people with severe and profound learning disabilities. It is very helpful, however, to have your support for a practical operational approach, proposing to invite everyone on the GP Learning Disability Register.

I am grateful for the further considerations of the JCVI. In line with your letter, I have asked the NHS to ensure that everyone on the Learning Disability Register is invited for vaccination as part of cohort 6."

A classic 'Nothing has changed!' moment. The JCVI stuck to their line that they were only recommending vaccines for people with Down syndrome and people with severe and profound learning disabilities, but with a begrudging and offhand statement that this kind of means in practice every adult with learning disabilities on the GP register.

And this face-saving fudge is having real consequences for people with learning disabilities now. The Green Book (yes, it really is called that) contains the last word, in excruciating detail, on what health services should do about about all sorts of vaccinations, including COVID-19 vaccinations (Chapter 14a, as I'm sure you needed to know - you can read it online). If you're a health professional who really wants to delve into the detail, this is where you look. So, who are the adults in clinical and other risk groups when it comes to COVID-19 vaccination? Table 3 defines and describes the set of risk groups, including, under the delightful title of 'Chronic neurological disease' (my emphasis in bold): 

"Stroke, transient ischaemic attack (TIA). Conditions in which respiratory function may be compromised due to neurological or neuromuscular disease (e.g. polio syndrome sufferers). This group also includes individuals with cerebral palsy, severe or profound and multiple learning disabilities (PMLD) including all those on the learning disability register, Down’s syndrome, multiple sclerosis, epilepsy, dementia, Parkinson’s disease, motor neurone disease and related or similar conditions; or hereditary and degenerative disease of the nervous system or muscles; or severe neurological disability."

To me, this is dangerously ambiguous wording. For health professionals not looking to include all adults with learning disabilities in an autumn booster COVID vaccination programme, this can be used as a justification. And the resistance to including all adults with learning disabilities in an autumn booster programme (with the infrastructure and means to make this a reality) is doubly depressing.Time and time again throughout the COVID-19 pandemic (and before, of course) institutional discrimination has been the default setting in health services when it comes to people with learning disabilities. Although there is always more to do, the first COVID-19 vaccine rollout showed what health services could achieve if people with learning disabilities were properly part of a major life-saving initiative. Yet this wasn't a ratchet, setting a new benchmark for how health services (even if only in terms of vaccination services) would routinely view people with learning disabilities. The rock that was pushed up the hill to prioritise people with learning disabilities in the first place has rolled right back to the bottom. We go again.