Thousands of families are having to sell their homes and raid inheritances because the NHS has wrongly denied seriously ill relatives free care.
It is now being compelled to pay back millions of pounds – often years after the patient has died.
Simon Wilson won back £250,000 in wrongly paid care fees after a lengthy legal battle. In 2012 he learnt of NHS Continuing Healthcare – an underused package that covers the cost of care for severely ill individuals. By then his mother had been in a nursing home suffering with chronic health problems for five years.
Her conditions included dementia, osteoporosis, choking and frequent falls. But when Mr Wilson, who spoke using a pseudonym, asked for his mother to be assessed for funding, she was denied.
Mr Wilson appealed against the decision but it would be almost another decade before the case was heard by an independent review panel. Late last year, almost six years after his mother’s death, he was awarded the money.
NHS Continuing Healthcare can save families life-changing sums of money; the cost of nursing care averages £50,000 a year, according to LaingBuisson, a healthcare data provider.
If someone is in care because of medical needs, the NHS is responsible for covering the cost, regardless of the individual’s wealth.
But the likelihood of people successfully claiming NHS Continuing Healthcare has fallen. More than 50,000 people were assessed for standard NHS Continuing Healthcare in 2021‑22 but fewer than a quarter were deemed eligible, compared with a success rate of almost a third a decade ago.
Lisa Morgan of Hugh James Solicitors said it was increasingly common for people to be turned down as the NHS grappled with a stretched budget. The law firm has claimed back £200m in wrongly paid care home fees.
Ms Morgan said: “It is so common that individuals and families are forced to sell their homes and other assets to pay for care because the NHS continues to incorrectly assess cases.
“These people have paid their taxes and the NHS should be there for them in their hour of need.”
Ms Morgan recently secured NHS funding for a patient with dementia who was paying £10,000 a month for care in a nursing home. “There just isn’t enough awareness around NHS Continuing Healthcare, and if people apply and are rejected many assume the NHS must be right. That’s just not the case,” she added.
When Kathleen Pearson’s Alzheimer’s deteriorated, her son Paul and his wife, Jill, were told she would have to self-fund the cost of living in a care home. The costs totalled £250,000 over seven years and the family were forced to sell her home to pay the bill.
But the heartache could have been avoided.
Mrs Pearson said her mother-in-law had not been properly assessed during her first six years in care and neither the home nor her hospital had suggested they might be able to get help.
The Pearsons became aware that Kathleen might qualify for Continuing Healthcare only in 2012, less than two years before she died.
Mrs Pearson said: “The process for claiming funding is a long, slow battle and is designed for you to give up. It took years, and in that time you can’t fully process the grief and are reliving the worst and final months of a loved one’s life.
“We managed to get back £30,000, but the care home records were sketchy, with lots of gaps, which stopped us from proving that Kathleen’s health problems had been severe for years. Our advice to anyone in a similar position is to keep your own detailed records.”
The chronically ill and their families must also contend with a postcode lottery. Funding is not determined by a central body but decided by integrated care boards, whose interpretations of eligibility can vary significantly.
Applicants in Oxfordshire have more than a 50pc chance of being successful, compared with just 5pc in West Berkshire, according to figures published by NHS England for July, August and September of this year. Dan Harbour of Beacon, which helps patients and families appeal against NHS funding decisions, said his advice line received an average of 1,300 calls a month.
A spokesman for the Department of Health & Social Care said: "Eligibility for Continuing Healthcare is not determined by age, diagnosis or condition or financial means. It is assessed on a case-by-case basis taking into account all of an individual’s needs.
"Where a full assessment has been undertaken and a person disagrees with the outcome, the national framework sets out options to address this. There is a robust appeals process in place to assure that the correct eligibility decision has been reached."