COVID-19 vaccination and people with learning disabilities – where should people with learning disabilities come in the list of priorities?

News of the potential effectiveness of COVID-19 vaccines has started to focus attention on priorities – as batches of the vaccine become available, who should be prioritised to get them first? This post sets out some of the evidence that, to my mind at least, builds a case for people with learning disabilities being a much higher priority for COVID-19 vaccinations than is currently being suggested.

What is the current suggested priority list for the COVID-19 vaccination? Here is the most recent interim advice from the Joint Committee on Vaccination and Immunisation (JCVI), published in September:

“This interim ranking of priorities is a combination of clinical risk stratification and an age-based approach, which should optimise both targeting and deliverability. A provisional ranking of prioritisation for persons at-risk is set out below:

• ·    older adults’ resident in a care home and care home workers
• ·       all those 80 years of age and over and health and social care workers
• ·       all those 75 years of age and over
• ·       all those 70 years of age and over
• ·       all those 65 years of age and over
• ·       high-risk adults under 65 years of age
• ·       moderate-risk adults under 65 years of age
• ·       all those 60 years of age and over
• ·       all those 55 years of age and over
• ·       all those 50 years of age and over
• ·       rest of the population (priority to be determined)^”

As you can see, this is heavily weighted towards older people aged 65 or over. Using ONS 2019 population estimates, this would mean that over 10 million people aged over 65 in England (and a majority of the 600,000 care and nursing home workforce who will be working with older people) would get COVID-19 vaccinations before anyone aged under 65, no matter what their risks of dying from COVID-19.

This is going to be a serious problem for people with learning disabilities.

The recent authoritative Public Health England analysis of COVID-19 deaths amongst people with learning disabilities in the first wave of the pandemic reported rates of death 3-6 times higher amongst people with learning disabilities compared to people generally. These rates of death become even more disproportionate at younger (adult) ages, with a peak age of COVID-19 deaths at age 55-64. The PHE analysis of LeDeR notifications suggests that COVID-19 death rates for people with learning disabilities aged 55-64 are higher than death rates for the general population aged 75+, and much higher than death rates for the general population aged 65-74 (see the graph below, copied from the PHE report). 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 PHE report also shows that, because people with learning disabilities were dying 15-20 years younger than other people even before COVID-19 hit, there are only around 13,000 older adults aged 65+ registered with GPs in England. For the general population, vaccinating everyone aged 65+ will cover around 24% of the adult population. For people with learning disabilities, vaccinating everyone aged 65+ will only cover around 5% of all adults with learning disabilities registered with GPs (there are around 240,00 adults with learning disabilities aged 18-64 registered with GPs). [UPDATE 2nd Dec 2020 - I made a couple of errors here. There are around 25,000 older adults with learning disabilities out of around 250,000 adults with learning disabilities registered with GPs. So it's 10% rather than 5% - the general point still stands however].

Going down the vaccination priority list, once the 10 million+ people aged 65 or over and care/nursing home workers for older people have been vaccinated, the next priorities are people aged under 65 who are ‘high risk’, then people aged under 65 who are ‘moderate risk’.

I’m assuming that people defined as ‘high risk’ are in one of the ‘clinically extremely vulnerable’ groups used in the 18^th November government guidance on shielding. The full list in the guidance is here:

“Adults with the following conditions are automatically deemed clinically extremely vulnerable:

• ·       solid organ transplant recipients
• ·       those with specific cancers:
• o   people with cancer who are undergoing active chemotherapy
• o   people with lung cancer who are undergoing radical radiotherapy
• o   people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
• o   people having immunotherapy or other continuing antibody treatments for cancer
• o   people having other targeted cancer treatments that can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
• o   people who have had bone marrow or stem cell transplants in the last 6 months or who are still taking immunosuppression drugs
• ·       those with severe respiratory conditions including all cystic fibrosis, severe asthma and severe chronic obstructive pulmonary disease (COPD)
• ·       those with rare diseases that significantly increase the risk of infections (such as severe combined immunodeficiency (SCID), homozygous sickle cell disease)
• ·       those on immunosuppression therapies sufficient to significantly increase risk of infection
• ·       adults with Down’s syndrome
• ·       adults on dialysis or with chronic kidney disease (stage 5)
• ·       pregnant women with significant heart disease, congenital or acquired
• ·       other people who have also been classed as clinically extremely vulnerable, based on clinical judgement and an assessment of their needs. GPs and hospital clinicians have been provided with guidance to support these decisions”

You will notice that adults with Down syndrome are on this list, presumably because of recent research reporting more people with Down syndrome than other people with learning disabilities are dying of COVID-19. For some health conditions on this list, particularly for those aged under 65, people with learning disabilities are more likely to experience them than other people, including severe respiratory conditions and chronic kidney disease.  

Going down to the next priority level for COVID-19 vaccination, those at ‘moderate risk’, again people with learning disabilities aged under 65 are more likely than other people to experience a range of the health issues in the ‘moderate risk’ list below, including: lung conditions, heart disease, diabetes, chronic kidney disease (yes I know it appears in both lists – I’m not the person to ask why this is), and being very overweight.  

“People at moderate risk from coronavirus include people who:

• ·       are 70 or older
• ·       have a lung condition that's not severe (such as asthma, COPD, emphysema or bronchitis)
• ·       have heart disease (such as heart failure)
• ·       have diabetes
• ·       have chronic kidney disease
• ·       have liver disease (such as hepatitis)
• ·       have a condition affecting the brain or nerves (such as Parkinson's disease, motor neurone disease, multiple sclerosis or cerebral palsy)
• ·       have a condition that means they have a high risk of getting infections
• ·       are taking medicine that can affect the immune system (such as low doses of steroids)
• ·       are very obese (a BMI of 40 or above)
• ·       are pregnant”

We don’t know how many adults with learning disabilities aged under 65 are experiencing one or more of these ‘moderate risks’ (as people often have more than one health issue), and we also know very little about how health issues commonly experienced by people with learning disabilities (such as constipation, gastro-intestinal reflux and dysphagia, which can all be implicated in aspiration pneumonia for example) relate to risk of serious consequences of COVID-19.

So, as I understand it the current COVID-19 vaccination priority list will first get through well over 10 million vaccinations of people aged over 65 (which will include only 13,000 older adults with learning disabilities registered with GPs) and care/nursing home workers working with older people. Only then, through complex processes of gatekeeping, will adults aged under 65 with learning disabilities who are ‘clinically extremely vulnerable’ (an uncertain but likely fairly small proportion of people aged under 65 with learning disabilities) get the COVID-19 vaccine, as part of the approximately 1 million people in England aged under 65 who are on the shielded patient list.

And it is only after vaccinating approximately 12 million people will adults with learning disabilities aged under 65 at ‘moderate risk’ be vaccinated, involving even more complicated and uncertain gatekeeping, and where there are likely to be larger proportions of people aged under 65 with learning disabilities but still missing a lot of people with relevant health issues.

 

So, in summary I think this priority list for COVID-19 vaccinations will vaccinate over 10 million older people and care workers first, which will only include around 13,000 older adults with learning disabilities. At this point the vaccination process will have missed 95% of adults with learning disabilities registered with GPs, even though death rates from COVID-19 for younger adults with learning disabilities from 35 years upwards are higher than those for the general population aged 65-74. Once the vaccination priority process moves on to adults aged under 65, the focus on the ‘clinically extremely vulnerable’ then those at ‘modest risk’ will involved complicated and inefficient gatekeeping, and will still miss large numbers of adults with learning disabilities with health conditions potentially putting them at risk. And this is before we even start thinking about the potential mental and physical health consequences of continued lockdowns and restrictions for people with learning disabilities and those who support them, whether family or paid workers.

 

My proposal is really straightforward. As with flu vaccinations now (and I know COVID-19 is definitely not flu, but many of the risk factors for people with learning disabilities are similar), 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 250,000 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. As well as saving lives amongst a group of people who already get a raw deal from health services and have been disproportionately hit by COVID-19, just think what a difference it will make to people being able to live their lives when restrictions and lockdowns may have taken a real toll.