Jo Whiley has said she is “living through a nightmare” after being offered the coronavirus vaccine before her sister, who has learning difficulties and diabetes and whose care home has been locked down due to an outbreak.
The BBC Radio 2 DJ, who has been campaigning for her younger sister Frances, who has the rare Cri du Chat genetic syndrome, to be prioritised for the jab, has spoken of her distress after a Covid outbreak in Frances’s care home.
Whiley said she would give up her jab “in a heartbeat” if she could so that her sister or any of the residents in her care home could have it instead.
According to figures from the Office for National Statistics, 60% of people who died with Covid-19 in England up to November last year had a disability. For people who had a medically diagnosed learning disability, the risk of death was 3.7 times greater for both men and women than for people who did not.
People with diabetes, as well as those with a “severe or profound” learning disability, are in priority group six for the jab, but Frances comes under priority category four due to her diabetes and underlying health conditions.
Invitations for the first dose had started to be sent out on Monday to people in priority groups five and six, which includes the over-65s and people considered clinically vulnerable.
In an interview with BBC Radio 4’s Today programme, Whiley, 55, said it had felt like a “long wait” for Frances to get the vaccine and when she got the call she had been “dreading” – that there had been an outbreak in the care home – last Thursday night, her blood ran cold.
“I can’t tell you how frustrating it is and how horrendous it is,” she said. “It is the stuff of nightmares at the moment. I feel like I am living through a nightmare. All weekend it has been awful – really, really difficult. It has been hard for my parents, it has been hard for everyone in the care home, and it continues.
“And then, ironically, I got a message to say I was due to have my vaccine before my sister who has got learning difficulties and underlying health conditions. Go figure.”
Whiley described the effect on her sister’s mental health as “quite extreme” and said Frances had become “very distressed” by being unable to see her parents – she normally returns to her parents’ home every three weeks.
Frances has also refused to talk to anyone over the weekend, and while she would usually call her older sister 30 times a day, she has not picked up the phone, Whiley added.
She said her mind is “boggling” as she does not know why she had been invited to get her shot as she is not in the government’s priority groups, but suggested it was possibly because she is classed as a carer for her sister, who is 53.
“I fail to understand, to be honest with you,” Whiley said. “She is in tier 6 but she also has quite bad diabetes, which in my understanding puts her in tier 4 because she has an underlying health condition, so I would have thought that she would have been vaccinated, but that hasn’t happened.”
She said she wanted to speak up for people like Frances “who have been overlooked” and are “neglected”. “This happens so often – people with learning disabilities are neglected, they haven’t got a voice.
“I would give up my vaccine in a heartbeat if I could for my sister and any of the residents in her house to have their vaccine. It just does not feel right.”
When the vaccines minister, Nadhim Zahawi, was challenged about the matter later in the programme, it was confirmed that Frances had tested positive for Covid-19 after the care home outbreak.
Zahawi said people with learning disabilities in residential care would now start getting the vaccine: “The case you’ve just described to me – living in residential care with a learning disability – is now being vaccinated in category six. We’ve just embarked on category five and six – that is happening now, so that case will be picked up.
“Of course we will need to wait 28 days after infection for us to be able to go back – hence why, for residential care, we go back four times to deliver the two doses because sometimes people can’t be given the first dose until the infection is over after 28 days.”