A man with quadriplegia was told that his funding for care would be canceled after NHS officials felt he was not disabled enough to qualify for support.
Simon Shaw, 54, has received 24-hour care since being paralyzed from the neck down after a 1984 car crash.
He relies on caregivers at night to help him with everything from going back to bed to drinking water. They also intervene with medical help if he develops life-threatening complications related to his paralysis, which can happen at any time without warning.
But a recent NHS assessment found that Shaw’s health needs were not serious enough to justify full-time medical care. Local health officials told him he did not meet the eligibility criteria and that his NHS funding would be suspended from June 20.
A show from Clapham, south London, said that means there is no money for his night care and he will be left without maintenance from 8pm to 8am for the first time in nearly four decades.
“Honestly, it’s scary,” Shaw said. “I do not know what I will do when my worries are taken away.
“I do not cease to exist after 20:00. I still have to go to bed, drink water and use the toilet – and I can’t do any of this alone.
“There are many things that can go wrong with my health and when they happen, they usually need urgent attention. If there is no one there, to be honest, it could mean death. ”
Shaw, who gives talks in schools, churches and youth clubs, is married with two adult children. His family is unable to administer the medical care he needs, and his wife is often absent at night caring for her elderly mother in Yorkshire.
Under an agreement that has been in place for several years, Shaw’s 24-hour care costs were split 60/40 between his local authority, the Lambeth Council, and his local health authority, the South East London Clinical Commissioning Group (CCG).
The part of the health authorities, which largely covered his overnight care, was provided by the NHS’s Continuing Health Care (CHC) scheme, funding for people whose serious health conditions mean they need medical care at home. yourself or in a nursing home.
Unlike social care, which is provided by local councils and checked for income, the CHC is awarded to anyone who meets strict criteria for the need for medical care.
NHS England has promised in 2016 that it will reduce its annual £ 3.5 billion annual CHC spending by £ 855 million by 2020-2021, largely by cutting administrative costs. But data reported in 2019 reveal that more than 7,000 patients receiving CHC have been deprived of funding after cost-saving measures were announced.
The latest official NHS data shows that only 22% of patients who applied for CHC funding in early 2022 received it – the lowest percentage since enrollment began.
Shaw’s local council and the spinal injuries association’s charity, which supports him, believe his health needs are so severe that his care must be fully funded by the NHS, and called for a reassessment in December 2021. d.
Five months later, the CCG in south-east London sent Shaw a letter – seen by the Observer – stating that it had found that it was not eligible for additional funding and that its current funding would be cut.
In an accompanying email, CCG said: “[Y]you do not meet the eligibility criteria for CHC. CCG will suspend funding on June 20, 2022, four weeks from today.
Shaw filed a complaint, but it could be months before CCG reconsiders his case. Funding is not usually provided to patients waiting to appeal.
Mandy Jamieson, a fellow with the Spinal Cord Injury Association, said: “We have seen an increase in severely disabled patients refusing funding in recent years, especially after the introduction of video-based assessments following the pandemic.
“But I think that, especially in Simon’s case, the decision was wrong. He has so many health needs that I find it amazing that he was turned down. “
After Observer contacted CCG in Southeast London, he contacted Shaw again, claiming that he never intended to withdraw his care funding while he awaited his appeal, and apologized that this “did not become clear “.
A spokesman said: “CCG will continue to provide financial contributions to Mr Shaw’s care and support package, without reducing funding or the package. We contacted Mr. Shaw to inform and apologize if this was not clearly communicated by the CCG. “
An NHS England spokesman said the eligibility for NHS CHC funding was “determined on an individual basis”.
Lambeth’s council did not comment.
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