Thousands Lose Care Funding After Living Longer Than Expected: Report

File photo of the hands of an elderly woman. Peter Byrne/PA Wire

Thousands of older and terminally ill people are having NHS funding for their care withdrawn after living longer than assessors expected them to, new research suggests.

Individuals awarded fast-track NHS Continuing Healthcare (CHC) to provide support at the end of their lives can have it removed following a review, leaving them to find the money for their own care even though their needs haven’t changed.

A report from Age UK found huge regional variation in access to CHC, even for longer-term conditions, with 58 percent of adults who applied being granted support in some parts of England, dropping to 5 percent in other regions.

The charity said that families are finding the system to be “a complete con,“ with decisions being made on an “ad hoc” basis and happening “behind closed doors.”

Terminally ill or rapidly declining patients are supposed to be given fast-track CHC, while others are awarded standard CHC if they are expected to live longer and have ongoing needs.

Increasing Number Eligible

Eligibility for funding is decided locally by teams who report into Integrated Care Boards (ICBs), with assessors deciding whether people’s needs meet the threshold 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.

Analysis of NHS data shows the number of people deemed eligible for the standard, longer-term CHC funding has fallen by 37 percent 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, down from 16,599 for the 12 months to the end of September 2018.

In addition, Freedom of Information data gathered from ICBs around England suggest 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.

‘Huge Care Bills’

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.”

In theory, the report said, decision on eligibility should be independent of budgetary constraints, while finance officers should not be part of a decision-making process. In practice, however, ICBs have been under pressure to make savings from their CHC budgets for several years.

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.”

She added that the current situation is “a recipe for deepening inequalities,” since more advantaged families are better able to fight for their rights than others.

‘Postcode Lottery’

“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.”

She said that the available support model 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.”

A statement from the NHS 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.”

Senior civil servant Sir Chris Wormald, now Cabinet secretary but then permanent secretary at the Department of Health, told MPs in March that CHC “is both an extremely expensive and growing area of the budget,” but said that individuals were at the heart of decision-making.

PA Media contributed to this report.