'Our life savings are spent on care that should be free'
Thousands of vulnerable patients in England are missing out on NHS funding for care that they are legally entitled to, it is being claimed. Some families say they have spent nearly all their life savings on filling the gaps.
When 83-year-old Joyce Bryant became ill two years ago with viral encephalitis, it was a tipping point. The illness left her with a substantial brain injury and unable to care for herself.
"Her behaviour was just manic," says her daughter Lyn Timothy. "She was banging on windows. She was hitting out at my dad, pulling plugs out of the sockets in the hospital ward."
The family decided additional support was needed to enable Joyce to stay at home with her husband and applied for funding from NHS continuing healthcare.
CHC covers the cost of social care for people with complex medical conditions, if the health problem is deemed the main reason they require such help.
It exists in a similar form in Wales and Northern Ireland, where it is delivered by health boards. Scotland has different care arrangements called Hospital Based Complex Clinical Care.
But despite clinical documents and videos showing Joyce's "unpredictable behaviour" - those who apply are judged according to national guidelines - the family's local Clinical Commissioning Group (CCG) found her needs did not meet its criteria.
"They said her behaviour was not unpredictable. It could be anticipated," Lyn says, adding she is unable to understand its rationale.
Her mother is now confined to bed and has been placed on an end-of-life care register by her GP due to a deterioration in her health.
Joyce's husband, Pete, who is in the early stages of dementia, has had to spend most of their savings on her 24/7 care needs and their funds are running out.
They are eligible for care home funding, but Lyn says the couple - who have been married for 57 years - have always wanted to stay together at home.
West Hampshire CCG said decisions in the case were taken by a panel of health and social care professionals, with input from Joyce's GP.
"A new application for funding can be made at any time and we would be happy to provide support," it said.
Every year about 160,000 applications are made for continuing healthcare, costing the NHS around £3bn.
Lloyd Tingley, chairman of the Continuing Healthcare Alliance, says the system is a "national scandal" denying many people the free healthcare they are entitled to.
"Some are dying before they get the care they need or are forced to sell their homes to pay for care that should be free," he said.
Last year, the Parliamentary and Health Service Ombudsman received 496 complaints about continuing healthcare funding and investigated 196.
The BBC previously reported thousands of people have died awaiting an NHS decision on eligibility for continuing care funding.
Labour MP Meg Hillier, chairwoman of the Public Accounts Committee, told the programme this was "just not acceptable".
"There needs to be real political will behind this to make sure those who are eligible are getting the money they need," she said.
Andrew Farley, of Farley Dwek Solicitors, said there were "thousands of people who have been forced to sell their houses to pay for the care in circumstances when they ought not to".
He said many people did not know about the existence of the funding, as they had not been told about it, or had difficulties "navigating the complexities of the system".
'Nearly broken me'
Suzanne Morrison's son John has cerebral palsy and cannot use his arms or legs.
His continuing healthcare funding was withdrawn in 2009, leaving his parents battling with their local commissioning group for 10 years.
"Fighting for John has nearly broken me," Suzanne explains.
"Watching somebody disappear, when you know it can be stopped. It's depressing, demoralising and it encompasses every conversation I have with my husband.
"You would like to give up sometimes, but I can't and I won't. It's not what we do."
In the last month, Wiltshire CCG has concluded that John now qualifies for fully-funded care.
His parents say they now intend to claim back £300,000 from the NHS, having spent most of their savings on his care.
"I am relieved because now the three of us can have a normal life again. A family life," Suzanne says.
Campaigners say the problem is due to funding cuts.
Analysis by the King's Fund suggests there has been a shift towards more people receiving fast-track continuing healthcare, usually for short periods of time, rather than the standard care - which is provided for longer, and therefore more expensive.
It also noted since NHS England was given a target to cut the projected rise in cost of continuing healthcare, in 2015-16, the number of people receiving it had begun to decrease relative to population size.
An NHS England spokesman said: "Spending on continuing healthcare is increasing and it is for CCGs to manage assessments based on demand in their area.
"There is still potential, however, to make the process more efficient and effective for patients, as the majority of people assessed turn out not to be eligible."
Julie Wood, chief executive of NHS Clinical Commissioners - the umbrella body for the 191 CCGs in England - said continuing healthcare was "a complex area", but that CCGs were "working hard to improve systems and processes to make it better and fairer for those that need it".
"In 2016-17, spending on continuing healthcare represented 4.3% of the entire NHS budget," she added.