- author, Alison Holt
- role, Social Affairs Editor
A disabled man has spent almost 10 months in a busy general hospital because he could not find a suitable home in the community.
Matthew Sharpe, who has a range of complex conditions, says he is left paralyzed as his local NHS and council try to decide who is responsible for his care.
Council chiefs in England say disputes between the NHS, local authorities and families are increasing over who should pay for more complex care cases.
Matthew’s Regional Health and Care System says it works with individuals, families and others to “understand the type of care a person needs.”
After several BBC reports over the past year, more than 250 people have contacted us raising concerns about NHS-funded social care, including Matthew and his family.
The 36-year-old had been in Epsom General Hospital in Surrey for more than 290 days – long enough for him to be medically discharged.
“I’m basically stuck in a prison,” says Matthew. “Life is so hard, life is sad, I’m so angry.”
The family says that this condition has caused his health to deteriorate.
Matthew has Tourette’s syndrome. It causes tics or involuntary spasms, some of which are so violent that they have damaged his spine – the reason he is now in a wheelchair.
Another tic means that he involuntarily calls and repeats words – sometimes the words are unpleasant. The stress he’s under has made his tics “more chaotic,” he says.
He has a learning disability and a range of additional physical and mental health conditions, including ADHD and Obsessive Compulsive Disorder (OCD).
On October 6 last year, Matthew was admitted to hospital with a urinary tract infection.
He had been in supported housing, but that placement had collapsed so he couldn’t go back.
Since then, Matthew has been living in a side room at the hospital. The constant noise and being in a ward with extremely sick people puts a lot of stress on him.
We meet at the University of Creative Arts near the hospital. Matthew is a talented artist and his parents brought a painting of him with them.
He maneuvers his wheelchair to get a closer look at the picture of three boats colliding on a bright yellow beach.
The sea and sky are bright blue, but Matthew points out the gray railings and sidewalk running across the bottom of the picture.
“It represents my life,” Matthew says. “The barrier that keeps me from doing the things I want to do.”
His parents, who have their own health problems, describe the situation as extremely distressing.
“Matthew is now in a situation where he doesn’t look like an individual,” says his mother Christine. “He has no meaningful life.”
Matthew’s support was funded by NHS Surrey Heartlands Integrated Care Board (ICB) under a scheme called Continuing Healthcare (CHC). Only people with the highest needs are eligible for this free NHS social care.
After spending almost two months in the hospital, he received a letter from the ICB, saying that it had tried 145 different homes to provide care and support. They identified three that could take him.
The ICB now says the family rejected a number of suitable options before reaching this more formal stage.
Matthew’s parents are strongly opposed to this. They also say that one of the three homes listed was suitable but was ultimately not offered a place.
When ICB wrote to Matthew again on December 4, 2023, he was told that there was only one house he could live in.
The family say the house is completely unsuitable for someone as vulnerable as Matthew, and that drug dealing takes place in the street outside.
The ICB letter said the placement was believed to have met “his assessed needs” and that if he refused it “this would mean you are refusing CHC funding and making your own private arrangements”.
CHC funds were withdrawn on 21 December. The ICB said a referral was made to Surrey County Council to provide his care.
The council says it was made aware of Matthew’s case in December but was not contacted until May.
Matthew’s disabilities – and being on benefits – mean that if his care is not funded by the NHS, it must be provided by his local authority.
But in the following months, the task of settling him somewhere was not taken up.
It’s a complicated case, but we haven’t been given a clear answer as to why this happened.
The consequence for Matthew is that he is stuck in the hospital.
Matthew’s mother Christine describes the current situation as “not fair to anyone”.
“The money that would have been spent on keeping Matthew in a hospital bed should have been spent on a place where he could live his own life and enjoy himself,” she says.
In May this year, eight months after Matthew arrived in hospital, the ICB says health staff requested a review to see if he was still eligible for NHS-funded continuing healthcare.
The official guidance says that “the threshold for this screening process has been deliberately lowered to ensure that all those who require a full assessment of eligibility have that opportunity”.
It also states that people should be given reasonable notice when this should happen. Experts say it usually means a few days.
Matthew’s family say he was given 10 minutes’ notice that an assessment or “checklist” would be carried out.
He called his parents an hour away. They could not get there in time to support him. He says he asked for the checklist to be delayed but was told it would go ahead without him.
We compared the checklist against previous multi-disciplinary assessments of Matthew’s health and care needs. There are significant differences.
In the checklist, his Tourette’s syndrome is noted as relapsing, and there appears to be little acknowledgment of the severity or impact of his tics.
No mention of his ADHD, OCD, or the deep brain stimulation that helps control his tics, and he needs help.
The checklist was completed using hospital notes. The ICB says it followed the national framework and involved health professionals in Matthew’s care.
But the family says the staff member involved is a rookie and doesn’t know him.
“It made me nervous. So basically, they don’t listen,” says Matthew.
His family says his health has worsened since his last assessment, but the checklist concluded he was no longer eligible for CHC.
Claire Stone, chief nurse at NHS Surrey Heartland, says that while it cannot comment on individual cases, it is working closely with those involved to “provide support and advice and ensure a smooth transition to any new arrangements”. She says “anyone who chooses to decline CHC care” can reapply at any time.
Surrey County Council says it began plans in June to release Matthew into a permanent home, adding that “an individual is at the heart of this complex case and it is important that Matthew’s interests are put forward above all else”.
Councils provide means-tested support for people in homes, care homes or supported living if they are found to have care needs that exceed health needs.
Of the 153 English councils with social care responsibilities, 143 responded. Almost three-quarters (74%) reported an increase in local disputes over whether councils or the NHS should fund a person’s care.
With their own budgets under pressure, almost all directors say they are less confident they will be able to meet their legal duties to support people in the coming year.
Tom Brown, speaking for Adass, says the current situation is unsustainable: “I think local authorities have become the provider of last resort for people with more complex needs.”
He says investment in community services is needed to allow health and social care to “make a profound difference in people’s lives”.
Matthew’s parents describe the existing health and care system for people like him as broken.
“The impact it has is destroying lives,” says his father, Roger. “It’s ruining Matthew’s life and it’s affecting our lives very badly.”
However, Matthew remains optimistic. He wants to become a famous Tourette’s artist – making abstract paintings and installations, and inspiring others.
“I’m really looking forward to the future,” he says. “But I need to be out of the hospital to really get my future.”
The Department of Health and Social Care says it is “determined to tackle the significant challenges facing social care” and is undertaking a “deep-rooted reform programme”.
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