Thousands of families await care cost decisions
Almost 12,000 people in England are still waiting to hear if they are due millions of pounds in backdated care fees - some nearly four years after applying.
They are among 60,000 people who think they may have paid for care that should have been funded by the NHS.
Many of them fear they could have wrongly sold their family homes to cover their costs.
NHS England says 80% of the backlog has been cleared and £140m refunded.
All the families put in retrospective applications in 2012 and 2013 to see if they were eligible for NHS "continuing care".
It covers fees when someone has very high nursing needs as opposed to needing help with things like washing and dressing.
BBC Radio 4 's You and Yours programme spoke to Andrea White, who is waiting to hear the result of her claim.
Her mother, Elizabeth Cockburn, who died in 2009, had sold her bungalow to pay for care home fees of more than £100,000.
"It wasn't until 2012 that I realised I could make a retrospective claim," said Andrea.
"It then took four years for the NHS to make a decision and a further six months to let me know what that decision was. A lesser person would have given up, I think, and even I have had to have legal advice as to how to proceed.
"It must also be very, very frustrating for the NHS actually doing the assessments."
Andrea was recently told her application had been refused. She plans to appeal and says she hopes it will not take another four years.
It has been described as the NHS's "best-kept secret", as many people are not aware that older and disabled people who need more than means-tested social care can apply for fully funded NHS continuing care.
They must have a "primary health need" to qualify. Care and accommodation costs can be covered if someone lives in a nursing home but people who live at home can also be eligible.
The backdated applications were allowed after the Department of Health announced two deadlines for claims dating back to 2004.
Anyone claiming for the period 1 April 2004 - 31 March 2011 had to apply by 30 September 2012.
Retrospective claims for 1 April 2011 - 31 March 2012 had to be submitted to the relevant clinical commissioning group (CCG) by 31 March 2013.
'I just want the money'
Howard Scott has spent a decade trying to recoup more than £43,000 that was paid to nursing homes for his mother's care.
He feels his own ill health has been made worse by the stress of the process.
"My emphysema has definitely got worse, more than if I hadn't had the additional burden of having to sort this out with so many different people, telling them the same story time and time again. It was about the principle - now I just want the money."
He claims the NHS CCG responsible for investigating the backdated claim has been disorganised and slow.
His wife Barbara says they received another letter informing them that some care home notes and documents had been lost or destroyed.
"It's been absolutely horrendous. They've lost the documents - again. We are no further forward than we were 10 years ago. We even have correspondence [sent] the same day, from two different departments, in the same building, telling us different stories. Nobody can give us any answers, that's the problem."
But it's a complex and time-consuming process, according to NHS Clinical Commissioners, which represents the CCGs that decide whether or not someone should have received NHS continuing care.
"We do absolutely understand the frustration, stress and anger that patients, carers and loved ones are expressing in relation to the claims not yet resolved," said its chief executive, Julie Wood.
"In April 2013, CCGs inherited this backlog of 60,000 claims as well as dealing with current patients requesting to be assessed for continuing healthcare. It's really complicated."
A national framework is used to decide cases so consistent decisions are made.
"They have to assess an individual's case across 12 'domains', looking at behaviour, cognition, communication, mobility, that sort of thing. Then they have to consider the severity of the need.
"Some CCGs have taken on some additional staff, like nurses who understand people's needs. Some have separated out retrospective claims from current claims."
But it can be hard to source old notes from nursing homes, social services, district nursing teams, GP practices or hospitals.
"In some cases, some of the paperwork may not be there," said Julie. "The people considering these claims can only work with the records they can actually access that go back to where they were receiving care at the time."
The totals paid out by CCGs for backdated NHS continuing healthcare claims is included in NHS England's annual accounts.
In 2013-14 it was £77m; in 2014-15 the figure was £61.7m.
The 2015-16 figure will be published in the NHS England annual report in July.