Beyond urgent: COVID-19 vaccination and people with learning disabilities

 This blogpost both updates a previous more detailed blogpost about this and tries to make an urgent case for why the entire adult population of people with learning disabilities in England (and those providing daily care and support for people, including family members and paid support workers) should be a top priority for COVID-19 vaccination now.

People with learning disabilities are at much higher risk of death from COVID-19 than the general population, with COVID-19 death rates for people with learning disabilities aged 55-64 higher than death rates for the general population aged 75+, and much higher than death rates for the general population aged 65-74. COVID-19 death rates for every age group of adults with learning disabilities aged 35 years upwards (35-44; 45-54; 55-64) are higher than general population COVID-19 death rates for people aged 65-74, who are a higher priority for vaccination.

The analysis above is based on the first peak of the COVID-19 pandemic in England. The graph below shows weekly information on the number of COVID-19 deaths of people with learning disabilities notified to the LeDeR programme up to 1st January 2021. Although not at the levels of the first peak, there is clearly a sustained and very serious second wave of deaths for people with learning disabilities that has been ongoing since October. This graph will also underestimate the number of COVID-19 deaths of people with learning disabilities for two reasons: 1) notifications of deaths can take time (particularly over holiday periods such as Christmas and New Year), so figures for very recent weeks will increase further as these notifications come into the LeDeR programme; 2) the LeDeR programme is not mandatory, and it is estimated that notifications to LeDeR are 65% of the actual number of deaths of people with learning disabilities. So far, 925 COVID-19 deaths of people with learning disabilities have been notified to the LeDeR programme – which would suggest that around 1,420 people with learning disabilities in England have actually died of COVID-19.

 

Because of gross health inequalities that already existed pre-COVID, with people with learning disabilities dying 15-20 years earlier on average than the general population, relatively few people with learning disabilities live into the older age brackets that are a priority for COVID-19 vaccination.

The table below is from the excellent @COVID19actuary group, in a report discussing vaccination priorities. Among other things, it shows (for England and Wales) the population added at each COVID-19 vaccination priority level, and where possible an estimate of how many vaccinations needed to prevent one death (as far as I can tell, this is the additional population in each vaccination group divided by the number of COVID-19 deaths of people in that group). 

 

Based on a variety of sources, I would estimate that (out of a total of around 240,000 adults with learning disabilities in England registered as such with their GP, which itself is a severe underestimate of the number of adults with learning disabilities living in England), the following numbers of people with learning disabilities might be within these vaccination groups:

Group 1: 6,000 people with learning disabilities aged 65+ in a care home (2.5% of adults with learning disabilities)

Group 2: 2,500 people with learning disabilities aged 80+ not living in care homes (1% of adults with learning disabilities)

Group 3: 2,500 people with learning disabilities aged 75-79 not living in care homes (1% of adults with learning disabilities)

Group 4: 6,000 people with learning disabilities aged 70-74 not living in care homes (2.5% of adults with learning disabilities)

Clinical extremely vulnerable (CEV). Very hard to estimate for adults with learning disabilities aged 16-64 (for reasons that are extremely important and I will return to later). People with Down syndrome are included in the CEV group, and people with learning disabilities are more likely to experience some of the other health conditions listed under CEV, so maybe 30,000 adults with learning disabilities (12.5% of adults with learning disabilities)

Group 5: 7,500 adults with learning disabilities aged 65-69 not living in care homes (3% of adults with learning disabilities)

At this point, the @COVID19 actuary table suggests that 16.7 million people in England and Wales will have received a COVID-19 vaccine, of which less than 55,000 will be people with learning disabilities. The table also suggests that, as vaccination proceeds through the priority groups, the number of vaccinations needed to prevent one death increases rapidly. For adults with learning disabilities as a total population, if 1,420 people with learning disabilities have died from COVID-19 so far out of a population of 240,000, then 169 vaccinations are needed to prevent the death of one person with learning disabilities. This is the same level as people aged 80+ in Vaccination Group 2 (160 vaccinations needed to prevent the death of one person).

Group 6. I found it impossible to come up with an estimate of the number of adults with learning disabilities aged 16-64 who would fit into the list of underlying conditions placing people at greater risk. This list explicitly includes people with ‘severe and profound learning disabilities’, and people with learning disabilities are more likely to experience the types of health conditions (e.g. diabetes) that are on this list, but we do not have the information to estimate the number of people with learning disabilities who count in this vaccination group.

Most adults with learning disabilities do not live in the care homes (especially care homes for older people) targeted in COVID-19 vaccination priority groups. Only 16% of adults with learning disabilities aged 18-64 getting long-term social care live in care or nursing homes, and the most common living situation of adults with learning disabilities aged 18-64 is living with their family (36% of people). Both people with learning disabilities living in supported living and living with families have been an extremely low priority for PPE, COVID-19 testing and ongoing support from most health and social care services, despite extremely difficult services that are taking a real toll on people and those supporting them. If frontline workers are a COVID-19 vaccination priority, then so should family members with direct caring responsibilities.

Practically, health information systems do not reliably record the type of information that would be needed to decide whether a person with learning disabilities should be included in the Clinically Extremely Vulnerable or Underlying Health Conditions vaccination priority groups. For example, GP records do not always record something as straightforward as whether a person has Down syndrome (which will qualify someone for the CEV vaccination group), and very rarely record whether the GP considers a person to be a person with severe or profound learning disabilities (which will qualify someone for the Underlying Health Conditions vaccination priority group). We also don’t have good evidence for the most part to pinpoint who within the population of people with learning disabilities is at particular risk (and who is not at risk), but we do know that the population of adults with learning disabilities as a whole is at much greater risk (and at younger ages) than the population generally.

As we saw in Wave 1 of the COVID-19 pandemic (triaging protocols for treatment, blanket DNARs etc), the existing health system discrimination experienced by people with learning disabilities gets worse when health systems are under intense pressure. Current vaccination priorities will incentivise complicated eligibility policing for people with learning disabilities, which rarely ends well for people. A lack of national focus on COVID-19 vaccines for people with learning disabilities means the potential for discrimination is greatly increased, and means a lack of attention to providing the reasonable adjustments that some people will need to get the COVID-19 vaccine safely. An interim analysis of 179 adults with learning disabilities across the UK, from the @CoronavirusLD project, recently reported that 80% of people with learning disabilities said they would take the COVID-19 vaccine, with most of the rest unsure.

There is an infrastructure to support COVID-19 vaccinations for all adults with learning disabilities, particularly learning disability nurses, who are in ideal position to mobilise a national COVID-19 vaccination effort for people with learning disabilities. 

Compared to the scale of the COVID-19 vaccination rollout, the population of adults with learning disabilities is relatively small. Social care support staff should be included within the existing COVID-19 vaccination priority groups. Alongside people with learning disabilities, family members providing direct care and support should also be a high priority for the COVID-19 vaccine – their risk is at least as high as people paid to provide care and support.

So – as in my previous blogpost in November, my proposal is really straightforward, although this is now urgent as the COVID-19 vaccination programme is up and running. Put adults with learning disabilities of all ages (registered with GPs if you need an institutional peg) as one of the most urgent priorities for COVID-19 vaccinations. In total this would be around 240,000 people known to GPs in England, a fairly small population in the grand scheme of what is being proposed with vaccinations, and working through GP registrations there is an infrastructure there to find people without the need for complicated gatekeeping. An equal priority for vaccination would be people who are in regular, close contact with the person, including family (many of whom are likely to be in current high priority vaccination categories anyway) and paid workers supporting people. Learning disability nurses provide an existing infrastructure to mobilise a national COVID-19 vaccination programme for people with learning disabilities. As well as saving lives amongst a group of people who already get a raw deal from health services and continue to be disproportionately hit by COVID-19, just think what a difference it will make to people’s anxiety when restrictions and lockdowns may have taken a real toll.