This is the story behind the headline, by Professor Katherine Runswick-Cole.
I came out of a meeting on Wednesday 24 February to find my Twitter notifications at 20+, and my phone alight with voicemails to tell me that people with learning disabilities are being prioritised in group 6 for the vaccine. After weeks of frantic tweeting, emailing my MP, conversations with allies, campaign meetings with Sunderland People First
and Speakup Self Advocacy
, I was delighted.
But relief was quickly followed by a growing sense of anxiety. This is the story behind the headline.
The missing million
When Matt Hancock, Secretary of State for Health and Social Care, wrote to the Joint Committee on Vaccination and Immunisation
he asked that they invite everyone on the Learning Disability Register to be vaccinated as part of cohort 6. There are 1.2 people with a learning disability in the UK, of whom only 250,000 are on the learning disability register. In other words, one million people with learning disabilities may not be vaccinated as a result of the announcement. The reasons for the low number of people who appear on the register are complex. The register was established in 2007
when there was an initial spurt in the numbers of people registered, but since then rates have risen only by about 4% a year.
Ignoring the science
Until now, the government has primarily used age as the proxy for prioritising who should receive the vaccine. They carefully framed decisions about who should be on the vaccine priority list as 'a decision for clinicians'. In the end, of course, Matt Hancock himself revealed in his letter to the JCVI that the decision to vaccinate people with learning disabilities was a political one to facilitate a 'practical operational approach
.' In fact, the government has been making a host of (bio) political choices to ignore the evidence that showed, right from the start, that people with learning disabilities were more vulnerable than others to COViD.
- The government knew that before COVID, people with learning disabilities die 20-30 years before they should because of inequalities.
- The government knew that people with learning disabilities living in group homes and supported living were more vulnerable to the virus spreading.
- The government knew that people with learning disabilities rely on close contact with others for care which increases their risk of exposure.
- The government knew that many people with learning disabilities were struggling to adhere to social distancing rules and/or to wear a mask.
- The government knew of the agonising distress people with learning disabilities and their families were experiencing because they couldn't see each other.
- The government knew of the growing evidence that DNRs were being inappropriately applied to people with learning disabilities in hospitals.
And despite the government's mantra that they were 'following the science', they ignored the data that showed that death rates from COVID for people with learning disabilities were 6 times higher than the general population
Who is listening to who?
People with learning disabilities, their family members and allies have been campaigning for vaccines for weeks now. In Oxford, My Life My Choice
led the way in persuading their local CCG to change the priorities.
Over the last few months, Sunderland People First
and Speakup Self Advocacy
have been encouraging people to write to their MP about prioritising people with learning disabilities for the vaccine. Inclusion North
has been providing easy read materials to raise awareness of the risks of exposure to the virus for people with learning disabilities. And yet, their campaigning has been sidelined while celebrities tell their stories and big charities claim the credit for the policy change.
In my journey from relief to anxiety I want to end with hope. My hope is that people with learning disabilities will be listened to alongside their family members and allies, because together we can make change.