Are you missing out on NHS cash to pay care home fees? Funding includes the cost of accommodation in a care home. Yet over the last nine years, Mr Spencer's primary care trust, NHS Suffolk, has repeatedly insisted he is not eligible for funding. His son Stephen Spencer, along with lawyers acting for the family, believes otherwise. "The local PCT [Primary Care Trust] has used every trick in the book, and some that aren't, to refuse funded care for my father," he says. At least the Spencer family is aware of NHS Continuing Healthcare funding. According to charities such as Age UK and the Alzheimer's Society, tens of thousands of people who might qualify for it are not, and neither are their doctors, who might point them in the right direction. They argue that CHC is a well-kept secret, with some PCTs apparently reluctant to publicise its existence. "Lack of awareness of this funding is a big problem," says Tom Gentry, policy adviser for health services at Age UK. There is a direct correlation between the numbers of people receiving this free care in any one PCT with how well the PCT publicises it, he says. In some trusts, 150 people per 50,000 of population receive funding, and in others that falls to 20 people per 50,000. That's a huge disparity. The root of the problem, he believes, is that the rules governing who is eligible for funding are open to interpretation. This gives PCTs, increasingly concerned with meeting financial targets, the opportunity to wriggle out of their obligations - and in some cases, he suggests, the most effective way to do that is to keep potential claimants in the dark. But even where patients and their families are aware they may be eligible for funding, securing it is very difficult, as Stephen Spencer testifies. I have sat through annual reviews, year after year, where the multidisciplinary team from the PCT quizzes me and a representative from the care home's nursing team about Dad's state of health. With 10 different areas of assessment, it's a long drawn-out process, and then they come back and say he doesn't qualify, and you have to appeal, and so it goes on. He describes the reviews as "a sad charade." On one occasion he claims the assessor reached under the blankets of his father's bed to "shake" a hand balled by arthritis and the effects of the stroke, and noted in his report that Mr Spencer had "a firm handshake." "On another occasion, a nurse told the assessor that they have to keep Dad's hands outside the bedclothes or he would scratch himself to the point of damaging himself," he recalls. "When I read the assessor's notes on the pro forma, it said: 'Can scratch," which I pointed out was a misrepresentation of what the nurse had said. They agreed to change the notes, but you have to be constantly vigilant. Stephen, 57, a former civil servant and now a language teacher, says he understands the need for rationing NHS funds. But my Mum and Dad have been penalised for doing what they thought was the right thing - saving for their retirement. All my parents" savings and every bit of money that has come into the house have gone to pay for his care." Chris Quince of the Alzheimer's Society adds that dementia is a particular battleground, with many thousands of people who may be eligible for funding currently paying for care. Dementia is too often seen as a natural part of ageing, with patients having the same sort of "personal needs" that many elderly people have anyway. "Yet dementia causes a range of complex health needs that are listed as qualifying criteria for CHC funding," he says. There are 60,000 outstanding claims for CHC that would, if accepted, cost the NHS between £1.5 billion and £6 billion - at a time when PCTs are being asked to meet increasingly stringent financial targets. In two weeks, the problem will become that of the new clinical commissioning groups (CCGs), which take over from the PCTs under the Government's health reforms. Even the NHS's lawyers, Mills and Reeve, describe the situation on their website as a "train crash." A stand-off seems inevitable, and this will only prolong the suffering of patients and their families as they wait for care claims to be assessed. Dawn Brook, a qualified nurse and director of a company that assesses eligibility for CHC funding, on behalf of lawyers representing patients and their families, says better communication is needed to ensure people entitled to funding get it. "It is the responsibility of staff in acute care to assess patients as they leave hospital, and make them aware that they could qualify for this funding," she says. But that is not routinely done because of the widespread lack of awareness among medical staff. In addition, the teams carrying out subsequent assessments on behalf of PCTs should not be employed by them, she argues: "As things stand, the PCTs are acting as judge and jury when it comes to decisions over CHC funding." The Spencers" tenacity, meanwhile, is starting to pay off. Last month, NHS Suffolk conceded that one nine-month period of George Spencer's care qualified for funding, and it has also agreed to fund his care from October 2012. A spokesman for NHS Suffolk said all applications for CHC funding are "carefully considered," using Department of Health criteria. A recent multidisciplinary assessment was undertaken which identified that Mr Spencer's condition had changed. He therefore met the criteria for NHS Continuing Healthcare. The PCT also said it "recognised that the application process can be an emotional and difficult time for patients and their families." Stephen says: "We still have the small detail of the past nine years" payments to resolve, but at least my Mum can sleep easy now. But it's a bitter victory. This struggle has ruined the past nine years of her life. Beat the deadline March 31, 2013 is the deadline for registering a claim for NHS Continuing Healthcare relating to the financial year 2011/12. The Department of Health says there is no deadline for appeals against previous assessments. For more advice, visit ageuk.org or alzheimers.org.uk.