Patients 'wrongly charged' for nursing home care
People in Scotland may be spending thousands of pounds on nursing home care when the NHS should be footing the bill.
BBC Scotland has learned that the number of people being awarded funding for nursing care in Scotland is falling.
The equivalent figure is rising in England.
More people could be expected to qualify due to the ageing population and the level of care it requires.
If someone has severe health problems which require intense or complex nursing care then the NHS is obliged to pay for that care, even if it is delivered in a nursing home or in the person's own home.
Those who fall into this category have typically suffered a severe stroke, or are entering the final stages of Dementia, Parkinson's or Motor Neurone Disease.
While Scotland does provide personal care for free, people in care homes and nursing homes are still charged accommodation costs.
It is this "hotel bill" which the NHS is obliged to pay for those who need nursing care as well as social care.
An Ombudsman decision in 2003 firmly established this principle in England, and thousands of individuals were able to claim back care costs they had been wrongly charged.
Since that landmark ruling, the number of "continuing healthcare" funding packages has been steadily rising in England. However the number of people qualifying for continuing healthcare in Scotland has fallen by 26% in the four years since monitoring began.
Robert Fyans asked for his mother to be assessed for continuing healthcare funding after a stroke left her severely brain damaged. However Mr Fyans' request was refused.
"We were flabbergasted and we asked to meet the health professionals," he said. "During that meeting we said that, since the only thing our mother could do on her own was breathe, surely she had major health issues? They said, 'she's not on a ventilator.' We replied that if she was on a ventilator she would probably be in hospital and wouldn't need the care package."
The family have been forced to sell their mother's flat in order to pay her care home costs. As there is no independent appeals process in Scotland, the Fyans family can't challenge the decision.
That's not the case in England, where the family of a woman in Wigan with almost identical healthcare needs were able to claim back £117,000 in wrongly paid care home fees. In general, people in England with complex health needs are now automatically assessed for funding, and have access to an independent appeals process.
"South of the border they are being proactive and assessing people for eligibility for continuing healthcare," said David Short, a litigation partner with Balfour and Manson. "That does not appear to be happening in Scotland. It's as if it's a secret society here. It doesn't look as if it's being offered when it should be offered."
Mr Short is one of several lawyers pursuing judicial reviews of cases. He explained: "If anyone disagrees with an assessment they can appeal, but it's to somebody internal to that health board and if that's not successful the next avenue they have available is to proceed to litigation. That can be an extremely costly avenue for them to take."
George Harper, partner with solicitors Innes Johnston, says the issue needs to be highlighted through the courts in Scotland, as it was in England.
"I have endeavoured to do that myself, brought it to the point where we were about to instruct a judicial review then the health authority decided not to pursue the matter," he said. "So it can work, but we do need clarity in Scotland and the only way to do that is to get the courts to look at it much more closely."
A successful judicial review could open the floodgates to thousands of claims, especially as lawyers might offer to represent families on a "no win no fee" basis.
Many families are being told that the English ruling "doesn't apply" in Scotland but lawyers who have spoken to BBC Scotland say this is not strictly true.
"NHS continuing healthcare is part of our system and it should be offered to people," said Mr Short. "We don't have to prove what is actually the law. The families of the individuals, who may have had to sell their houses, are entitled to get their money back."
The BBC first exposed the scandal of wrongly-charged care home fees in Scotland in 2007. Shortly after the story was broadcast, the newly elected SNP issued new guidance for health boards. However Mr Harper says the new guidelines made it even harder to get a funding arrangement.
"It just seemed to make a fudge of the issue," he insisted. "It's now more difficult than ever to decide when someone should qualify for continuing healthcare."
Care at home
A Scottish Government spokesman said: "While eligibility for NHS Continuing Health Care is a clinical decision, our policy is to move away from institutional care and to have more people living more independently in homely settings, for as long as possible.
"Those policies are working - statistics show more people receive free personal care at home, while fewer people are receiving NHS Continuing Health Care in a hospital or care home.
"Eligibility in England was changed on the back of judgements which do not apply in Scotland and we retain a separate system."
NHS Tayside, which is responsible for the care of Robert Fyans' mother, said that approval is a "professional clinical judgement" based on the "criteria for continuing NHS health care as set out in the government guidance."
Parkinsons UK, Alzheimer Scotland, the Stroke Association and MND Scotland have all told the BBC they have concerns about the implementation of continuing healthcare in Scotland.
The Stroke Association is now calling for every stroke survivor to receive an assessment of their needs.
Interim Director in Scotland Elspeth Molony said: "Some of the most severely disabled stroke survivors will also be eligible to receive a continuing care package which covers all their care costs from accommodation to personal and nursing care. However, not everyone entitled to this support is currently receiving it, meaning that many of the most severely disabled survivors are left struggling to cope with the after effects of stroke alone. This needs to change."