Severely disabled people including those with spinal cord injuries are suffering due to problems accessing support through the NHS Continuing Healthcare (CHC) scheme. It is also due to the Conservative Party’s axing of the Independent Living Fund (ILF) in 2015 – which at the time supported around 18,000 disabled people. All this leads to people with complex needs being dumped into care homes, often ‘blocking beds’ for extended periods without staff who can adequately respond to their needs.
NHS Continuing Healthcare: failing people like Alex
This happened to Alex in Poole after a devastating surfing accident in Argentina left him with serious spinal cord injuries (SCI). Following this ordeal, Alex was looking forward to restarting his life, living independently, and working for the RNLI, something he had done prior to his accident:
But problems began almost immediately when he had to wait six weeks for an occupational therapy assessment to determine his entitlement to care. In January 2024 he was found ineligible for NHS Continuing Healthcare (CHC) funding with his needs found to be ‘managed needs’ with little consideration of the extent of his SCI.
During this process and following it, Alex – who was just 44 years old – had been placed into a totally unsuitable care home for older people. This nursing home didn’t even have staff trained for those with SCI.
For someone with such a passion for life, this not only put him at risk physically but mentally as well. His hopes and dreams had to be put on-hold, leaving him feeling lonely and depressed.
One major factor that didn’t help was his inability to leave the care home as there wasn’t enough staff to help. Going out alone was risky for Alex, but in desperation he had no choice but to make a break for it.
Alex said being cooped-up “led to me nearly becoming crazy”. He added:
I’ve seen more people passing away in the last year than in my whole life.
In desperation, Alex appealed and got in touch with the Spinal Injuries Association (SIA) for help.
It shouldn’t be down to disabled people to fix this – but it currently is
With the support from SIA Advocacy manager Carol Barraclough, Alex has finally got the news that his application has been approved.
As a result of this he has now moved into a house where he is looking forward to living his life more independently, restarting his career with the RNLI, and getting to see his friends and family.
Reflecting on his experience, Alex has advice for others in a similar position. He said:
Get help from people who know about your condition and know about the system and how it works. You need the experts working because sometimes a word can change a lot of things.
This year long ordeal Alex suffered case raises key points regarding the funding of care and the role of CHC.
Amidst the ongoing social care crisis, CHC – an NHS funded scheme providing care workers for people who have primary health needs in the community – has not had the attention nor the rise in funding desperately needed.
This has resulted in a patchy, postcode service with inconsistent assessment decisions and huge delays. Many ‘first decisions’ end up having to be appealed, meaning an even longer wait.
For someone like Alex, who can be independent at home with the right care, this wait means through no fault of his own that he is taking up a valuable care home place. Such a place could be used for an elderly person who needs a ‘step-down’ bed for rehabilitation after being in hospital.
Featured image via the Canary and additional images supplied
