Thousands of people are having NHS funding for their care withdrawn after living longer than expected, new research suggests.
People given fast-track NHS Continuing Healthcare (CHC) to provide support at the end of their lives can have it removed following a review, leaving them needing to find the money for their own care.
A report from Age UK found huge variation in who can access CHC, even for longer-term conditions, with 58% of adults who applied getting support in some parts of England, dropping to 5% in other regions.
The charity warned that families find the system “a complete con”, with decisions being made on an “ad hoc” basis and happening “behind closed doors”.
CHC is a package of care funded solely by the NHS when people are determined to have a “primary health need”.
Terminally ill or rapidly declining patients are given fast-track CHC, while others are given standard CHC if they are expected to live longer and have ongoing needs.
Eligibility for funding is decided locally by teams who report into Integrated Care Boards (ICBs), with assessors deciding whether people’s needs are high enough to qualify for funding.
According to Age UK, while the number of people deemed eligible for CHC has risen, the increase is made up of new fast-track patients who are only expected to receive the funding for a short time.
PA news agency analysis of NHS data shows the number of people deemed eligible for the standard, longer-term CHC funding has fallen 37% since 2018.
For the 12-month period to the end of September 2024, some 10,538 assessments resulted in people being deemed eligible for CHC.
This is down from 16,599 for the 12 months to the end of September 2018.
In addition, Freedom of Information snapshot data gathered by PA from ICBs around England suggests thousands of people are having fast-track funding removed, with experts saying this is because they are living longer than expected, even though their needs may not have not changed.
For example, the FOI revealed that, in County Durham, from July 2022 to December 2023, some 2,662 fast-track CHC funding allocations were reviewed.
Of these, 1,170 people were deemed no longer eligible for CHC funding, 756 remained eligible and others were given NHS nursing care funding at a lower rate.
In Tees Valley, there were 3,170 fast-track reviews, of which 1,096 were deemed no longer eligible and 1,350 remained eligible.
In Cheshire and Merseyside from July 2022 to December 2023, some 774 people receiving fast-track funding had their case reviewed, of whom 172 were deemed no longer eligible for funding.
Of the remainder, 350 stayed eligible while others were directed to nursing care funding which is granted at a lower rate.
In South Yorkshire, from the 2021/22 financial year to February this year, 581 people had fast-track funding reviewed, of whom 343 were deemed no longer eligible and 229 remained eligible for funding. Others were given NHS funded nursing care at the lower rate.
Age UK said that many older people with chronic ill health and significant care needs are wrongly missing out on CHC funding, leaving some with huge care bills.
Its report said: “The data, and accounts of older people that feature in this report, suggest that CHC as a long-term intervention to support people with complex needs to live well is becoming less available.
“There is also evidence that suggests that those that do receive fast-track CHC are increasingly losing eligibility at review.”
The report said that, in theory, eligibility decisions should be independent of budgetary constraints, while finance officers should not be part of a decision-making process on who gets funding.
However, it said that in practice ICBs have been under pressure to make savings from their CHC budgets for several years.
In March, Sir Chris Wormald, now Cabinet Secretary but then permanent secretary at the Department of Health, told MPs that CHC “is both an extremely expensive and growing area of the budget” but insisted individuals were at the heart of decision-making.
Caroline Abrahams, charity director for Age UK, said there was clear evidence of NHS “rationing”, adding: “It’s no exaggeration to say that many families come to view Continuing Healthcare funding as a complete con, and the data suggest the gap between what it is supposed to do and what it is actually doing is growing.
“It is deeply unfair to expose families dealing with the serious ill health of a loved one to further trauma by making them battle for money in an opaque system, where decision-making seems pretty ad hoc and happens behind closed doors.
“It’s also a recipe for deepening inequalities, since more advantaged families are much better able to fight for their rights than others.
“In addition, the extreme postcode lottery for CHC makes a mockery of the idea that this is a rules-based system which is not influenced by the state of local NHS finances. It plainly is.”
Ms Abrahams said there have been “long-standing gripes” about people being unfairly barred from receiving CHC funding because the eligibility process is rigged against them.
She said that any funding that is available now seems to be moving away from being a source of longer-term care funding for “profoundly frail and unwell older people, to one focused more and more on short, sharp injections of cash to support those at the end of life”.
She added: “This is to the extent that if a person does not die as quickly as expected, they are at increasing risk of having their CHC funding taken away.”
Marie Curie executive director of policy and research, Dr Sam Royston, said that to “hear people are being stopped from receiving the support they so desperately need is appalling”.
He added: “We are well aware of the strain on the health system, and withdrawing this funding runs contrary to enabling people to have care in the community, rather than ending up in emergency departments and hospital beds, which is often not the place where they want to die.
“It’s disappointing to hear that we are in such a place in 2024, and discussions must now happen at pace about a sustainable, long-term solution for funding CHC for dying people.”
An NHS spokesperson said: “Eligibility for NHS continuing healthcare funding is determined on an individual basis by local health and social care professionals in line with guidance and regulations set by the Department of Health and Social Care.
“Regardless of age or diagnosis, if an individual is deemed eligible then their care should remain funded under continuing healthcare.”
