Simon Shaw, paralysed from the neck down, deemed “not disabled enough” for overnight care.

Image Credit: Sophia Evans, The Observer

Simon Shaw, 54, saw his life changed when a car accident in 1984 left him completely paralysed from the neck down. He requires assistance and support in all aspects of his life, including turning over in bed, having a drink of water and going to the bathroom - something he has been receiving since the accident. The care team are not just there for basic access needs though, there are life threatening risks that come with paralysis including breathing difficulties, blood clots, excessively high or low blood pressure and related heart problems, and stroke. Thankfully, for the last 38 years he has had carers on standby to intervene with medical aid if needed at night.

A recent NHS assessment to check his needs however has changed Simon’s life again after NHS officials decided that Simon’s needs were not severe enough to warrant full-time medical care. He was told that he did not meet eligibility criteria and his NHS funding would be stopped from 20 June. This despite his health needs not changing since the accident.

This means, for the first time in nearly 4 decades, Simon is going to be left unsupervised for the 12 hours from 8pm to 8am, as without the funding he and his family simply cannot afford to fund night-time care.

Simon lives with his wife in Clapham, South London, and they have two adult children. However, his family are not able to provide him the medical care he needs. And on top of this, his wife is regularly away overnight as she splits the role of caring for her unwell mother in Yorkshire with her siblings. This is a responsibilty she took on because she knew Simon had a team to care for him, and was safe at home.

Speaking to The Guardian, Simon said

It’s frightening, to be honest, 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.

Until now, Simon’s care needs cost were split between his local authority, Lambeth Council, and his local health authority, South East London Clinical Commissioning Group - the council covering 60% and the CCG covering 40%. The CCG portion was covered by something called the NHS’s continuing healthcare, or CHC scheme. This scheme provides funding to people who have serious health conditions that require medical care at their home or in a care home. This was the portion that largely covered the overnight care costs.

Back in 2016, NHS England announced it would be reducing the £3.5bn they were spending on CHC by £885m by the 2020/21 year. At the time it was said this would largely be done by making cuts to administration costs, however an investigation by The Telegraph in 2019 revealed that more than 7,000 patients who were covered by the health service had their funding revoked since the cuts were announced. On top of this, the latest official NHS data shows just 22% of patients who applied for CHC funding in early 2022 actually received it.

To receive the CHC funding you must meet explicit criteria. The national rules state that any patient with a significant health problem should have such fees paid in full - if the condition is deemed to be the main reason they need such help.

On these grounds, Mr Shaw has lodged an appeal, however it could be months before the CCG reconsiders his case. Funding is not normally granted to people whilst they wait for appeal, however after being contacted by The Observer, South East London CCG, contacted him 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”.

However, this still leaves Simon and his family with potentially months of anxiety and fear about the outcome, and what his future might look like if they do revoke his funding.