When the first phase of the UK vaccination program is fully underway, the government’s tone of complacency suggests that all clinically vulnerable groups will soon be on the line of protection. Certainly, there are reasons to be positive: millions of people are on their way to safety. But look a little closer and many high-risk people are struggling to access the vaccine.
When the vaccine was first introduced last year, the Joint Committee on Vaccination and Immunization (JCVI) placed protectors, or the “clinically extremely vulnerable” (CEV), as low as sixth on priority list, behind older people with no underlying health problems. The result was a puzzling situation in which a 65-year-old running a marathon to get the vaccine was given priority over a 20-year-old with lung disease who needs oxygen. The government took a 180-degree turn after the pressure, bringing VCE people to fourth place behind healthy over-75s. These are complex calculations, but there are still fears that some will be lost. I have heard from disabled youth who do not meet the government’s narrow CEV criteria and are concerned that they will not be given priority at all.
Squires, many of whom are of working age and living with children, also have additional risk factors compared to older people. As the British Medical Association said this month, we need a more sophisticated vaccine delivery that takes into account circumstantial factors such as race, health inequality and employment. I have received many messages from squires who are terrified of being forced to go out to work, or that schools will reopen before getting vaccinated.
“My husband is 44 years old, has rheumatoid arthritis, and has received a text message from the government to tell him that he should protect himself again,” a reader, Clara, sent me just before the schools closed. “Today our 10-year-old son has returned to elementary school, so my husband will have to protect himself in a bedroom for the foreseeable future. They had their last hug at the door this morning. My husband’s mother is 75 years old, retired and lives alone with her husband. He has not been told to protect himself, and yet he will get the vaccine before his son. “
There are also those with learning disabilities to consider. Currently, only older people with a learning disability, those with Down syndrome, or people who are considered to have a severe learning disability are in the Priority list. This means that people with a mild or moderate learning disability have no priority. This is despite the fact that all people with learning disabilities have a death rate six times higher than the general population. Young adults with a learning disability 30 times more likely die of Covid than young adults in the general population.
There is also no evidence that people with mild learning disabilities are in less danger; research shows that 65% of people with a learning disability who died of Covid in the first wave had a mild or moderate learning disability. Even those in nursing homes don’t have the same access compared to their older counterparts. While ministers celebrated The vaccine is offered to all older people in eligible care homes, people with learning disabilities in social care settings remain in group six on the vaccine priority list (unless they qualify elsewhere).
Children with disabilities are also being excluded from the conversation. The vaccine priority list excludes anyone under the age of 16, meaning that even children who are clinically extremely vulnerable are not eligible for protection. It is true that, fortunately, the danger of Covid for healthy babies is very low, but that is hardly reassuring for parents of a disabled child.
The government guidance says there is limited data on the safety of the vaccine in children and that recommendations for children under 16 with underlying health conditions will be reviewed after the initial implementation phase, when there is more evidence. This is clearly the correct course of action, but there needs to be much greater communication with concerned families in the meantime, as well as practical support for disabled students who miss extra school. A concerned mother, Louise, emailed me about her 10-year-old daughter Elisabeth. Elisabeth is gastrostomy fed, sleeps on oxygen, uses a wheelchair and has not been to school since last March. She should start high school in September, but without information about the vaccine, her mother has no idea if she will get there.
Or look at the caregivers. While social care workers are prioritized for the vaccine, there is concern that personal assistants (care workers hired directly by a disabled person) will be left out. I have heard of several disabled people who have to pressure their GPs to strike “at their discretion”; some have been granted, others have been denied. Meanwhile, unpaid family caregivers have only been placed on the priority list after another Change of direction by the government. The charity Carers UK tells me that the Department of Health and Welfare has not yet updated their summary list, which means that caregivers and those administering the vaccine will not know that they are now eligible.
Finally, we must ensure that everyone can physically access vaccines. Initial reports from 92 years queuing In the cold or people sent 100 miles for a vaccine are concerning, especially for the disabled young people they see, who also struggle to line up or use the steps. Disabled and elderly people should have a nearby appointment at an accessible facility, and more importantly, they should not miss the vaccine if they have to decline it in a place they cannot get to. Similarly, anyone who is unable to leave their home due to health concerns should be able to quickly access the jab and be clear about who they communicate their needs to. The goal should be that no one is left behind.
It can be uncomfortable to talk about the priority status of the vaccine, as if different groups had to compete for their lives. And yet these are vital questions, especially for a government that has done little to gain the public’s trust, or show its ability to protect it. As vaccine distribution continues, those most at risk deserve the highest level of care.
• Frances Ryan is a columnist for The Guardian
George is Digismak’s reported cum editor with 13 years of experience in Journalism