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When the radio presenter Jo Whiley spoke last month about the absurdity of being offered a Covid vaccine before her sister, who has diabetes and learning difficulties, the ensuing outcry prompted a change in government policy.
Within a fortnight, during which Whiley’s sister, Frances, was hospitalised for Covid, the government announced that all individuals on the learning disabilities register would be prioritised for a coronavirus vaccine.
But in Liverpool, learning disabled (LD) patients have been offered the chance to attend special clinics since before the government U-turn. The Central Liverpool GP Network, which has 106,000 patients across the city, invited the Guardian to attend one to see what adaptations are needed for this vulnerable group in society.
The first, most obvious difference is how quiet the surgery is at Princes Park medical centre. Most coronavirus vaccine clinics tend to be noisy places, with marshals corralling people into the right queue, and the excited buzz of patients.
One mass site in Newcastle can rattle through 30 people every five minutes, but the Liverpool GPs have allocated 45 minutes per LD patient, which includes an annual health check. One patient is Gary Mason, who lives alone in sheltered accommodation.
“I just want to get the bloody thing done,” says the 59-year-old, who has turned up with a handwritten note given to him the previous day by his GP, telling him where and when to come for his jab.
He is ushered into a private room where Ioan Wardhaugh, a student doctor, slowly talks him through the vaccination process. Mason has already rolled up his sleeve, ready for another student doctor, Portia Amoako-Tawiah, to administer the dose. He giggles as she plunges the needle in, and insists afterwards he hasn’t felt a thing.
Not all LD people fully understand the risk of Covid, says Hilary Harper, a health facilitator for learning disabled patients in Merseyside: “There’s plenty of people who really don’t understand the need for isolation. There’s people who should be shielding, but because they live alone they’ve got no one to tell them.”
One of her regular patients was recently hospitalised for Covid and discharged himself home with tubes still attached after misunderstanding something a nurse had told him. “The nurse came around to see him and said ‘you’re doing really well, you should be going home soon.’ He literally got up and walked out because he interpreted what she said literally,” she said.
Other patients have worried incessantly, like Natalie Davies, 31, who has come for the jab with her mum, Josephine. She has autism and has been obsessed with Covid statistics, says Josephine. “I had to keep telling her to get off her phone and stop looking at the numbers. I’m really glad she’s had the vaccine now.”
For people with severe learning difficulties who do not have the mental capacity to consent, the decision on whether to give the vaccine can be more complex. On Friday a judge ruled that a man in this situation should have the jab despite his family’s objections.
The judge, based in Manchester, considered the case at a hearing in the court of protection. NHS Tameside and Glossop clinical commissioning group has responsibilities for the man’s treatment and had asked the judge to rule that vaccination was in his best interests as he was “clinically vulnerable”. However, the man’s father argued the vaccine had not been tested sufficiently, said it did not stop people contracting Covid and said the long-term side-effects on people with severe health issues were unknown.
The judge said the man’s father had outlined his concerns, which he said were founded on love, with “conviction and great clarity”, but he decided the family’s objections had “no clinical evidence base”. The health authority said the vaccine would not be administered if any form of physical intervention was required.
Sinead Heneghan, a GP and the Liverpool network’s LD champion, can’t understand why the government didn’t prioritise LD patients sooner. “We know that people with a learning disability have been disproportionately affected by Covid. They’re six times more likely to die from Covid, and those aged between 18 and 34 are 30 times more likely to die,” she says.
Many patients’ health has drastically deteriorated during lockdown. “The last clinic we did, we picked up so many health problems that wouldn’t have been identified if it wasn’t for us doing these health checks. Mental health was the big one. But we also picked up people who were having bleeding from the bottom or blood in the urine, or really bad chest issues,” says Heneghan.
“People with learning disability die decades earlier than the general population,” says Harper. “Red flags can can be missed with people who have learning disabilities, and those contribute towards early death.”
The government pays GPs £12.58 a jab, making small LD clinics such as Princes Park uneconomical. But Beth Lynch, a GP who is in charge of the Central Liverpool network vaccine rollout, says vaccinating this vulnerable cohort is not a burden.
“Investing in thorough, proactive care with this population, both in terms of Covid vaccination and top-to-toe health checks, proves vital in ensuring their health needs are met, both physically and holistically,” she says. “This prevents long, traumatic hospital admissions, which are so upsetting for our LD patients and their carers. Deciding whether to invest in equitable, proactive healthcare or traumatic unplanned hospital care is a complete no-brainer, and these patients deserve nothing but the former.”
Source: The Guardian
Keyword: Less buzz, a gentler pace: the vaccine clinic for learning disabled people | Learning disability