Health Inequalities are laid bare in the Vaccination Priority List Lottery
“I don't want my family to not have me around,” Scott Watkin, NDTI board member and SeeAbility head of engagement, told Radio 4’s Today programme this week. Scott added: “We know from what Public Health England are saying that no matter how severe or profound your learning disability is, you’re likely to die from covid”.
People with Down’s syndrome are fourth on the vaccination priority list and people with profound or severe learning disabilities are sixth, but learning disabled people in general are not a priority. Scott, who also has a visual impairment, is not due to be vaccinated until the autumn.
Yet people with learning disabilities face a greater risk of dying from Covid, regardless of any priority list position. Figures from Public Health England, as Scott explained, show that learning disabled people are six times more likely to die from the virus than the general population and younger learning disabled people - like my sister Raana - are 30 times more likely to die. NHS figures show that in the first five weeks of the current lockdown, 65% of deaths among learning disabled people were from the virus.
Then there is fresh evidence from Mencap that learning disabled patients are being issued with Do Not Attempt Cardiopulmonary Resuscitation notices, despite warnings against this practice from Care Quality Commission. And this is on top of the significant and existing health inequalities
So GPs are using clinical discretion to vaccinate while people, families and care and support staff desperately lobby surgeries to get the jabs. Areas like Kent and Medway and Oxfordshire are vaccinating all learning disabled people, irrespective of the priority list. Although welcome, a postcode lottery approach is not ideal.
The lack of logic in this situation was underlined this week as Radio 2 DJ Jo Whiley told how she had been offered the vaccine before her learning disabled sister Frances, who has since tested positive for Covid.
There are many similar cases. A 49-year-old colleague who has a health condition told me she been offered the vaccine, but not her 23-year-old autistic son who has severe asthma, nor her 52-year-old partner with ADHD and extreme social anxiety. A friend without any health conditions has been offered the jab, but not her sister in supported living.
Until a few days ago, Raana and I were due to have the vaccine around the same time later this year - despite the greater risk she faces from Covid. She is not on the priority list but all her support staff have been vaccinated and her housemates who are on the priority list were about to be vaccinated. The stress of this - at a time when my sister is already unsettled, missing her family and her regular activities - made her physically sick with nausea and she started skin-picking again.
Raana has now had the jab thanks to her compassionate GP who concluded it made sense to vaccinate everyone, no matter where they were on the priority list. But is wrong that to be vaccinated, people must rely on thoughtful and flexible GPs and the support of staff and families to fight for the vaccine.
I have yet to come across one single convincing, logical reason why all learning disabled people are not being added to the priority six group. In contrast, the evidence in favour of vaccination is overwhelming. Every day we see and hear stories from learning disabled people, their families and allies as well as quantitative and qualitative data proving that mass vaccination makes practical and moral sense.
Doctors should use clinical discretion, as Scott says, “but will they that’s the question do they value us as people and as human beings”?. This question is also one to ask the government decision makers who have the power to change vaccination policies.
Author: NDTi Ambassador, Saba Salman