WHEN it comes to the COVID-19 vaccine, there are understandably a number of groups vying to qualify for the top tiers. Many have valid arguments as to why they should be near the top of the queue, but most people agree that the most vulnerable in our society should be prioritised.
So, what of those with learning disabilities, a traditionally overlooked demographic? Data submitted to the Learning Disabilities Mortality Review (LeDeR) during the first wave indicated a death rate 6.3 times higher than the general population. Other factors suggest that this figure is an underestimate, as Public Health England stated in November 2020 that the study was only able to report on mortality in people whose learning disabilities were recognised and recorded by health services; or reported to LeDeR by family or friends.
The 0.57% of adults registered with GPs who are on learning disabilities registers is substantially lower than the numbers currently identified in English schools as having moderate to severe special educational needs or profound and multiple learning difficulties. The great majority of people recognised as having learning disabilities in schools are not recognised as such by health services in adulthood.
Those missed are likely to have mild or moderate (as opposed to severe or profound) intellectual disabilities, without major physical syndromes. This group are known to have poor physical health, including higher rates of obesity and diabetes, putting them at increased risk of death from COVID-19. They are also likely to have less capacity to understand and follow guidance on social distancing.
Despite these heart-breaking lessons from the first wave in 2020, Buckinghamshire Council told Talkback that only as of now, people with a learning disability have got to the stage of being vaccinated. At last – but it’s way too late for many! It is a sad indictment of our so-called society when a group of citizens has the highest death rate but are forgotten, not valued or treated as members of the community.
All of this comes on top of the distressing news that ‘Do Not Resuscitate’ orders are still being used for people with learning disabilities and autism, despite the Care Quality Commission stating that they shouldn’t be. This is currently the subject of a Watchdog enquiry.
In recent weeks, a few celebrity stories have emerged that highlight these issues. Radio 2 DJ, Jo Whiley, revealed that her sister, Frances, a care home resident with a learning disability and diabetes, had not been offered the vaccine; whilst Jo herself, aged 55, had received her own appointment. She said she would give up her vaccine for her sister in a heartbeat. Frances is now recovering after being hospitalised with coronavirus.
Author Ian Rankin, of Rebus fame, raised similar concerns about his son, Kit, who suffers from Angelman Syndrome.
“It does seem an anomaly that where Kit lives was classified as a care home when it came to lockdown procedures but wasn’t when it came to vaccinations.”
It’s great news that, as a result of Jo Whiley’s campaign, everyone on the GP learning disability register should now be prioritised for a COVID vaccine. However, this doesn’t account for the many people that fall through the cracks of categorisation. The NHS is being asked to collaborate with local authorities to identify other adults in residential care or receiving community living support, who are severely affected by a learning disability and may not be registered, but who should be offered a vaccine.
No-one can deny that the government has very difficult decisions to make. They are constantly being asked to prioritise certain groups of people over others. But when weighing up the value of a life, it seems that people with a learning disability have been disadvantaged (again) when they should be vaccinated as a matter of greatest urgency.
Will it take the same kind of passion generated by the inspirational Black Lives Matter movement before the injustices suffered by people with learning disabilities are fully recognised? Successive governments have made all the right noises, from Tony Blair, through David Cameron, to the present incumbents, but there has been little progress. Empty words full of good intentions – no real action.
Just as it shouldn’t take Marcus Rashford to expose the fact that thousands of children would be malnourished without support, it shouldn’t be left to Jo Whiley and Ian Rankin to uncover the plight of those with learning disabilities. The statistics are in the public domain, there for all the decision-makers to see – a death rate 6.3 times higher than the general population!
In assessing those that are at the highest risk and in crucial need of the vaccine, one can only conclude that the government are either not doing their job properly or that they don’t care.
You decide which.
Written by Tony Flower. Research by Krysia Niezgoda.