Man paralysed from neck down ‘not eligible’ for night-time care

A quadriplegic man was told his care funding would be revoked, after NHS officials deemed him not disabled enough to qualify for support.

Simon Shaw, 54, has received 24-hour care since he was left paralysed from the neck down after a car accident in 1984.

He relies on carers at night to help him with everything from turning in bed to having a drink of water. They also intervene with medical aid if he develops life-threatening complications related to his paralysis, which could happen at any time, without warning.

But a recent NHS assessment controversially ruled Shaw’s health needs were not severe enough to warrant full-time medical care. Local health authority officials told him he did not meet eligibility criteria and his NHS funding would be stopped from 20 June.

Shaw, from Clapham, south London, said that meant there was no money for his night-time care and he would be left unsupported from 8pm to 8am for the first time in nearly four decades.

“It’s frightening, to be honest,” Shaw said. “I don’t know what I’m going to do when they take my care away.

“I don’t cease to exist after 8pm. I still need to get into bed, have a drink of water and use the toilet – and I can’t do any of it on my own.

“There are a lot of things that can go wrong with my health and when they do, they usually need urgent attention. If there’s no one there, to be frank… it could mean death.”

Shaw, who gives talks to schools, churches and youth clubs, is married with two adult children. His family are not able to administer the medical care he needs and his wife is frequently away overnight looking after her unwell elderly mother in Yorkshire.

Under an agreement that had been in place for several years, Shaw’s round-the-clock care costs were split 60/40 between his local authority, Lambeth Council, and his local health authority, South East London Clinical Commissioning Group (CCG).

The health authority’s portion, which largely covered his care overnight, was provided under the NHS’s continuing healthcare (CHC) scheme – funding granted to people whose serious health conditions mean they need medical care at their home or in a care home.

Unlike social care, which is provided by local councils and is means-tested, CHC is awarded to anyone who meets strict criteria of needing care for medical reasons.

NHS England pledged in 2016 it would reduce annual its £3.5bn annual spend on CHC by £855m by 2020-21, largely by cutting administrative costs. But figures reported in 2019 revealed more than 7,000 patients in receipt of CHC had had their funding revoked since the cost-saving measures were announced.

The latest official NHS data shows just 22% of patients who applied for CHC funding in early 2022 received it – the lowest rate since records began.

Shaw’s local council and the Spinal Injuries Association charity, which is supporting him, believed his health needs were so severe his care should be fully funded by the NHS, and requested a reassessment, which took place in December 2021.

Five months later, South East London CCG sent Shaw a letter – seen by the Observer – which said it had found he was ineligible for any additional funding, and his current funding would be removed.

In an accompanying email, the CCG stated: “[Y]ou do not meet the CHC eligibility criteria. The CCG will cease funding on the 20th June 2022, four weeks from today.”

Shaw lodged an appeal but it could be months before the CCG reconsiders his case. Funding is not normally provided to patients waiting to appeal.

Mandy Jamieson, a caseworker for the Spinal Injuries Association, said: “We have noticed an increase in patients with severe disabilities being turned down for funding in recent years, particularly since the introduction of assessments via video call since the pandemic.

“But I feel particularly in Simon’s case the decision that has been made is wrong. He has so many health needs that I find it incredible that they turned him down.”

After the Observer contacted South East London CCG, it contacted Shaw again, claiming it had never intended to withdraw his care funding while he waited for his appeal and apologised that this “was not made clear”.

A spokesperson said: “The CCG will continue to provide funding contributions towards the care and support package of Mr Shaw, with no reductions to the funding or the package. We have contacted Mr Shaw to advise of this, and to apologise if this was not clearly communicated by the CCG.”

An NHS England spokesperson said eligibility for NHS CHC funding was “determined on an individual basis”.

Lambeth Council did not comment.