Families face unfair ‘luck of the draw’ over NHS continuing healthcare – report

There is an unfair “luck of the draw” when it comes to families getting NHS funding for their loved ones, according to a report.

Financial pressures are also playing a “key role” in how NHS continuing healthcare (CHC) operates, “with all parts of the system facing significant pressure to keep costs down”, the study from the Nuffield Trust found.

CHC is a package of health and social care provided outside of hospital, which the NHS pays for.

It is for people who are identified as having a “primary health need” but has repeatedly hit the headlines for being an unfair system.

Various parliamentary reports have criticised how funding is allocated across England, while the National Audit Office said the system can leave families without support they are entitled to.

Some families have taken local health organisations to court to win CHC funding after being turned down.

In the latest analysis, researchers found CHC is failing to reach some of the most unwell patients in England.

They said the current CHC framework reinforces deep regional inequalities, with variations in who is eligible for funding, and less being spent per person in deprived areas and the north of England.

Despite overall spending on CHC increasing, the number deemed eligible for help is falling.

Overall, the number of people eligible for CHC fell from 57,216 at the end of June 2017 to 52,008 at the end of December 2024 – a drop of 9.1%.

This is being driven by fewer people being able to access longer-term CHC funding, compared with fast-track funding, which is intended to support people at the end of their lives.

Researchers found that, in all years with the exception of 2020/21, there was a statistically significant fall in the average number of people eligible for CHC in the last two quarters of the financial year compared with the first two.

“The exact reason for this pattern is not clear, but the financial pressures the (NHS integrated care boards) are under are widely acknowledged and these may be playing a part,” the report said.

Researchers said CHC can be a lifeline for people with significant ongoing care needs, but if someone is found ineligible they can be faced with a “cliff-edge of potentially catastrophic costs”.

Their report said: “The current situation means the stakes are high – an ‘all or nothing’ approach that is problematic and does not reflect the nature of need.

“With both the NHS and social care under pressure to keep costs down and allocate resources equitably, people requiring care are caught in the middle.”

Researchers called on the NHS and Department of Health and Social Care to urgently improve consistency and fairness in how CHC operates.

They also said the review of social care by Baroness Casey offers a “key opportunity” to create a resilient and fair care system.

Nuffield Trust fellow Rachel Hutchings said: “For people grappling with the bewildering CHC process, the stakes couldn’t be higher.

“Being eligible can be the difference between having all of your health and social care funded or being faced with catastrophic care costs, often during times of crisis.

“But our research suggests that access to this vital funding is unfair and inconsistent.

“Not only is the assessment process itself challenging, but the toll it takes on families is long-lasting, part of an ongoing struggle to access good quality, timely care for their loved ones.

“CHC is a window into the stark divide in our system between care that is funded by the NHS and care that isn’t, and it exposes yet more flaws with our wider social care system.”

Ruth Driscoll, associate director of policy and public affairs at Marie Curie, said: “This new research shows that people at the end of life are falling through the cracks of our broken health and social care system.

“A gruelling assessment process for fast-track continuing healthcare and a postcode lottery that disadvantages people in deprived areas means terminally ill patients are missing out on the care packages they desperately need.”

Jess Mcgregor, president of Association of Adult Social Care Directors (Adass), said: “This report highlights the lack of fairness and consistency in who receives CHC…

“Our latest survey found 75% of directors of adult social services reported an increase in the number of people no longer eligible for CHC who would have previously qualified for the NHS funded care.

“We are worried that the NHS, which struggles to move resources away from hospitals, is increasingly balancing its books by taking away care from individual people.

“This is placing pressure on councils’ adult social care budgets and the frontline adult social care workforce who are increasingly taking on the responsibilities previously delivered by health partners in the NHS, often without associated funding, training, supervision or strategic co-ordination.

“But perhaps most worryingly, it is placing unimaginable emotional and financial stress on people drawing on care and the people who love them, often at the end of their lives.”

A Department of Health and Social Care spokeswoman said: “We recognise everyone should have access to high-quality, compassionate care, from diagnosis through to end of life.

“Continuing Health Care eligibility is based on the need of the local area and so there will always be some variation due to factors including the age profile of the local population, variations between geographical regions in terms of health needs, and the availability of locally commissioned services.

“As part of our 10 Year Health Plan we will shift more healthcare out of hospitals and into the community, to ensure patients and their families can access the care they need, where and when they need it.”