Learning Disability England members and partners and the wider learning disability community have been campaigning for all people with learning disabilities to be made a priority for the COVID-19 vaccine.
The current JCVI guidance still does not prioritise ALL people with a learning disability for the vaccine. Learning Disability England said there has been no direct acknowledgement of the fact that the Learning Disability Mortality Review (LeDeR) research data showed that 65% of people with a learning disability who died from COVID-19 in the first wave had a mild or moderate learning disability.
Whilst the guidance does prioritise people with severe and profound learning disabilities and also epilepsy, members are reporting that individual GPs are not interpreting and applying this in a consistent way, leading to significant distress amongst people with learning disabilities and their families.
There is a growing concern from Learning Disability England and its members about the ‘postcode lottery’ as individual Clinical Commissioning Groups (CCGs) and GPs are relying on JCVI guidance which encourages ‘local flexibility’ in the absence of a clear instruction to add all people with learning disabilities to the priority list. For example, Kent and Meday have made a decision, based on the LeDeR statistics and death rates of people with learning disabilities from COVID-19, that all people with learning disabilities living in their area will be given a priority vaccine.
In November 2020, some of the vaccines that were still being tested were nearly ready for approval. The UK government announced that at-risk groups would be vaccinated before Christmas and most over-50s before the spring. At that time, the government said these at- risk groups would be elderly people and health and social care workers.
Learning Disability England members began to talk more about who would get the vaccine first. A lot of members said they wanted to see ALL people with a learning disability and their family and friends who were unpaid carers made a priority for the vaccine. This was because Learning Disability England knew from Public Health England’s statistics published, on 11th November 2020, that people with learning disabilities are six times as likely to die as a result of COVID than the general population.
On 27th November, Learning Disability England’s Representative Body co-chairs sent a letter to Helen Whatley MP to put forward why they think people with learning disabilities should be high on the list for getting the vaccine. On the same day, Learning Disability England along with partner organisations sent an Open Letter to Professor Wei Lin, the chair of the Joint Committee on Vaccines and Immunisation (JCVI).
Learning Disability England said People with learning disabilities have been ‘marginalised in health and care for decades’. The last Annual Learning Disability Mortality Review, published in 2020 and based on 2019 data prior to the outbreak of COVID-19, found that women with a learning disability died on average 27 years earlier than women in the general population, and men with a learning disability died on average at 22 years earlier than men in the general population.
By 16th December, Learning Disability England and partner organisations had not had a reply to the letters sent in November. Roll out of the Pfizer vaccine had started. And members felt it was really important to keep the pressure on. So the Representative Body Co Chairs wrote to Jonathan Van Tam, the Deputy Chief Medical Officer to ask him to intervene. On 18th December, the JCVI replied to the Open Letter sent on 27 November. The letter advised that they had made the decision that they would not prioritise all people with learning disabilities for the vaccine.
Learning Disability England members felt this was an ‘unacceptable risk’ that had a simple solution: address the impact of COVID-19 by prioritising every person with a learning disability for the vaccine.
There has also not yet been any official guidance about adjustments to vaccination delivery so reasonable adjustments in receiving the injection can be offered (like place, timing etc as we know for other interventions), though they have been advised that this is being developed by NHS England. There are also apparently no nasal versions of the vaccine on the immediate horizon where someone is not able to tolerate injections for a range of reasons.
Two people with learning disabilities have issued court proceedings through Bindmans LLP with 39 Essex Street Chambers against Matt Hancock, the Secretary of State for Health, seeking priority access to the COVID-19 vaccine for all individuals with learning disabilities, on an equal basis with other highly clinically vulnerable individuals.
Learning Disability England will continue to campaign and raise awareness about this issue in the hope that both the government and the JCVI recognise and acknowledge that the lives of all people with learning disabilities are as important as any other by prioritising them for the vaccination as soon as possible.
Scott Watkins, Co-Chair of Learning Disability England’s Representative Body, said, ‘Learning Disability England has been campaigning for several months for all people with a learning disability and their unpaid (family) and paid supporters to have the vaccine as a priority. This has included writing to Helen Whately MP and Dr Jonathan Van-Tam, and coordinating and co-signing an Open Letter to the JCVI. While we are pleased that some people with a learning disability and some family carers are now a priority for the vaccine, the PHE’s statistics that people with learning disabilities are six times as likely to die as a result of COVID than the general population are stark. We will continue to campaign for priority vaccination to be extended to all.’
Visit the Learning Disability England website to read the full report.