Valmai Williams, 99, a former music teacher, was diagnosed with dementia 12 years ago and has been in a care home for the last nine years. She has been using up her savings to pay for the care.

Her family had no idea that she was eligible for funding that would have covered some of her costs, and helped to relieve the burden of the fees that now add up to £58,000 a year.

It was only when her son, Huw, 73, hired a solicitor to investigate that the NHS admitted it should have been helping with the bills.

Williams, a retired construction project manager from Neath, is angry. “I was paying month after month, not realising there was any help available. It was only while scrolling online that I even heard about NHS continuing healthcare,” he said.

• Could you afford £1,800 a week for care?

What you can get

Thousands of families face a similar battle. Many are unaware of the support available, and some are turning to no-win, no-fee solicitors to help recover charges that they should never have paid.

Adult social care includes nursing care, residential care for those who cannot live independently, and support at home with personal care. Anyone with assets worth more than £23,250 must usually pay for their own care. This includes the value of their home, unless it is still lived in by a partner or dependant.

Councils say that no one will be forced to sell their home during their lifetime and that they can recover costs from an estate after death.

NHS continuing healthcare can cover the full cost of care for people with serious and ongoing health conditions. Unlike council-funded social care, it is not means-tested. There’s no cap on how much can be paid, and it’s supposed to be based purely on need.

To be eligible someone must be assessed as having a “primary health need”, meaning that their care is driven mainly by medical rather than social reasons. But many families find the strict assessment process confusing, and even professionals sometimes struggle to understand it. Even if you are found to be eligible, you will be reassessed regularly.

Swansea Bay Health Board found that Valmai was eligible for continuing healthcare from April 2022 to January 2023, and from January 2023 to October 2023. So far the family has been paid about £80,000 towards care fees, but it is not a simple process. “We still have to pay the fees and then it takes six to nine months to get the money back each time,” Huw said.

“It’s a scandal. Nobody ever told us about this option. Not one doctor, nurse or social worker mentioned continuing healthcare. My parents worked their whole lives, saved, owned their own home and are expected to pay the full amount for their care. Meanwhile, someone in the next room who perhaps never worked gets full funding.”

The rising costs

Care home fees went up as much as 10 per cent in April according to LaingBuisson, a market analyst. One in seven nursing homes now charge self-funding residents more than £1,800 a week — the equivalent of £93,600 a year.

“The cost of care has been increasing at an alarming rate. Clients come to us after they have had to sell the family home or drain life savings to pay care fees,” says Lisa Morgan from Hugh James, the law firm representing Williams.

“A lack of awareness and increasingly tough assessments mean that 30 per cent of those who should be entitled to continuing healthcare are wrongly turned away. Guidelines are being applied too narrowly, and eligibility still depends too much on where you live.”

Rising claims

The Parliamentary and Health Service Ombudsman, an independent complaints handling service, has received more than 450 complaints a year for the past five years about continuing healthcare. The most common issue was around eligibility decisions, often relating to how appeals are handled.

The ombudsman said: “Continuing healthcare provides much-needed support for people with complex health needs. But we have seen how mistakes in the decision-making process can significantly impact those affected, such as needing to fund their own care and feeling stressed and anxious about the situation.

“In our investigations, we’ve repeatedly found failings in how decisions are communicated. It is not our role to decide whether the decision was correct, but we have also found failings in how the appeal process has been explained to people.”

An ombudsman report in 2020, based on more than 300 complaints, called for clear government guidance on retrospective assessments. “We welcomed the updated guidance published in December 2023 and hope it will improve the system,” it said.

• The care can’s been kicked down the road long enough

Caroline Abrahams from the charity Age UK, said: “As we reported last year, continuing healthcare remains a postcode lottery. Fewer people are getting funding for longer-term care, and many families are worn down by the assessment process.”

“Even when funding is approved, families live in fear of reviews removing it, despite no change in need. Families deserve better, but that won’t happen until continuing healthcare is properly managed as part of wider reform and funding of social care.”

How to get NHS Continuing Healthcare

People with substantial, ongoing and complex health need can get their care fully funded. This includes care provided in nursing homes or at their home.

Unlike other social care, continuing healthcare is not means-tested. You qualify if your primary care need is health-related rather than social. Qualifying conditions include advanced dementia, Parkinson’s disease, motor neurone disease, or complex disabilities. The main criteria are that needs are health-related and complex.

But with health boards under pressure to control budgets, campaigners say that more claims are being rejected.

“Sadly, cases where families are being wrongfully denied care funding are increasingly common,” said Morgan. “NHS England data shows that, despite an ageing population, the number of people deemed eligible for continuing healthcare has fallen by over 20 per cent since 2015.”

• The reality of care costs: ‘My 101-year-old mother’s £150k bill’

Anyone wanting to apply should ask their GP, district nurse or social worker for a continuing healthcare checklist. If eligible, a full assessment by a multidisciplinary team will evaluate your needs across areas including mobility, cognition, behaviour and medication. Assessments typically take 28 days but can take much longer.

Those who are rejected can request a review from their local Integrated Care Board and, if unsuccessful, appeal to NHS England. Many families engage no-win, no-fee solicitors — but be aware that they will take a cut of any money you are awarded. As a final step, complain to the Parliamentary and Health Service Ombudsman, which assesses procedural correctness only.

Those who are wrongly denied continuing healthcare can request retrospective reviews, and may be able to reclaim substantial amounts, even if your relative has died. In Wales, retrospective reviews are limited to one year, managed by Health Boards, unlike Integrated Care Boards in England.