Since the pandemic began more than a year ago, one of my greatest fears has been losing my brother, who lives in a care home. He is in his late 20s, is severely autistic and has epilepsy, as well as other complex needs. He is extremely vulnerable. According to Public Health England, people with severe learning disabilities are six times more likely to die from Covid-19 than the general population. In my brother’s age group, the 18-34 bracket, the death rate is 30 times higher.
Then there is the added risk of where he lives. According to the Office for National Statistics (ONS), living in a care home is a “major factor in the increased exposure of people with learning disabilities to Covid-19”. The communal nature of these facilities, combined with how much contact is required between care workers and residents – my brother needs help with everything, from washing and dressing to preparing food – makes transmission much more likely.
This is terrifying for families, many of whom are still waiting for their loved ones in care homes to be vaccinated and dread the news of an outbreak. This is the nightmare that the DJ Jo Whiley and her sister Frances are now living through.
If my brother did fall ill, he would be unable to communicate his symptoms. His epilepsy means that a high temperature could cause a life-threatening seizure. Were he admitted to a hospital, he wouldn’t really understand what was happening. If treated using tubes for ventilation he would probably pull them out, and the fear might make him aggressive, so he could pose a risk to staff and patients. My fears for his life should he become ill were not helped by news about disabled people being sent “do not resuscitate” forms.
Then in January, we received the news that, along with other care home residents, my brother would be receiving the vaccine. I cried with relief. But the feeling was to be short-lived. After announcing that all care home residents in Wales would be vaccinated by the end of January, the Welsh health and social services minister, Vaughan Gething, said that he had meant only elderly care home residents.
To our shock, my brother was placed in category 6 of the Joint Committee on Vaccination and Immunisation (JCVI) priority list. His carers were distressed and confused. They had all been vaccinated, and furthermore, the care provider’s English residents had all been vaccinated too.
The JCVI guidelines focus on age groups rather than taking into account the “complex needs” of individuals such as my brother. At the same time, there is flexibility when it comes to making decisions about vaccine prioritisation under the UK’s devolved health system. What has emerged is, essentially, a postcode lottery.
In England, there seems to be more willingness to take personal circumstances into account at all levels: government, health board, and GP. Some GPs have spoken to disabled people and their advocates and agreed to move them up the list on the basis of their being “extremely clinically vulnerable”. Other doctors, health boards and local authorities have diverted spare, perishable doses of leftover vaccines to care homes for disabled people.
However, Wales’s adherence to the JCVI list has been especially rigid, and Welsh Labour’s intransigence when prevailed upon to think again has been depressing. I have spent the past two weeks on the phone and sending frantic emails to everyone I could think of – the GP, our assembly members, the health board, public health, various charities – while crying my heart out in between. Every day we had to wait felt like the day my brother could become sick. As a family we felt left behind.
On Friday, the care home finally received news of a vaccination slot for my brother. This was a decision that was made on a GP level, due in part, I suspect, to the letter the care manager wrote to the doctor laying out all the ways in which my brother is extremely vulnerable, as well as the advocacy of our family. The other residents in my brother’s care home, as in other Welsh care homes, are still waiting. Like the rest of group 6, they could be waiting until April (the Welsh government says it hopes to be more flexible with groups 5-9, but we will see how that works in practice). So while I am jubilant, I am also fearful for the 3,500 severely disabled people in care homes in Wales, and for the people across the UK who face similar battles.
It is still a mystery to me how the JCVI can lump all severely disabled people together when being in a care home puts a person at so much extra risk. Furthermore, it’s unfair that access to a jab for severely disabled people is dependent on being noisy and knowing who to lobby, and having the time to do so. The postcode lottery is unjustifiable and puts added strain on disabled people, their families, their carers and their doctors.
Analysis by the ONS last week showed that six in 10 Covid deaths up to November last year were of people with a disability. Throughout this pandemic, disabled people and their families have been forced to confront the possibility of mortality. We have also had to face the fact that some people do not deem disabled people’s lives to be important or worthy, and would happily see them thrown under the bus if measures to protect them harm the economy. After 10 years of ideologically driven suffering at the hands of the Conservatives, the discriminatory tone of many lockdown sceptics has been a hard pill to swallow. Do not resuscitate letters are still being sent out.
When my brother gets his jab this week, I will be over the moon. It brings me one step closer to seeing his smiling face – it has been more than a year now since I have been able to visit. But I will also think of all the families who are not so lucky, and of those vulnerable people in care homes who, like Frances, caught Covid unnecessarily while they were waiting for a vaccine. I cannot imagine the fear and fury that Frances, Jo and her family are feeling. As ever, being disabled means having to continually fight the system. It’s exhausting and it’s unfair, and people will die because of it.
This content first appear on the guardian