Nuffield Trust warns of “highly inconsistent” NHS Continuing Healthcare system, with wide regional variation in eligibility, spending and practice

The report, published last week (26 September), warns that CHC – a package of free health and social care provided outside of hospital which the NHS pays for – is failing to reach some of the most unwell patients in England in their time of need.

The Nuffield Trust said: “CHC is a vital source of support for people with some of the most complex health and care needs. Its existence goes to the heart of both the moral and practical debates about how we do (and should) fund and provide care for people with complex needs outside hospital. But it has become a microcosm of the dysfunctions that a cash-strapped, paltry social care system and a struggling NHS have wrought.”

In the report, authors highlight the “paradox” that, despite overall demand for health and care services being on the rise and spending on CHC increasing by around 17% between 2017 and 2023, the total number of people found eligible has fallen over time (by 9% between June 2017 and December 2024) and “varies significantly” across the country.

CHC funding can be a lifeline for people with significant ongoing care needs, such as from an accident or disability, including at the end of life.

However, if someone is found ineligible they can be faced with “potentially catastrophic” costs, or local authorities can be required to foot the care bill, the Nuffield Trust observed.

Report authors therefore warned that the current ‘all or nothing’ approach to deciding who gets this free care is “dysfunctional”, and “does not reflect the nature of need”.

The study made the following key findings:

• There is an almost five-fold difference between the Integrated Care Boards (ICBs) with the highest and lowest rates of CHC eligibility. Some of this variation could be explained by differences in population need. Areas with older and more deprived populations were more likely to have higher CHC eligibility rates. But this does not explain the extent of the variation.
• Spending on CHC is not distributed equally and is lower per eligible recipient in the north of England, even after adjusting for geographical differences. In 2022/23 (latest data), a person found eligible for Standard CHC in the North West had on average £22,432 less spent on their care that year compared to the England average which is £65,012 per eligible recipient.
• In 2022/23, the average (median) amount spent per eligible recipient of Standard CHC was £47,300 in the most deprived fifth of local areas compared to £95,085 in the least deprived fifth of areas.
• The research raises concerns about a “postcode lottery” and unfair and inconsistent practice. Variable relationships between NHS organisations and local authorities and financial pressures are affecting the numbers of people being referred, assessed and found eligible for CHC.
• The average cost per eligible recipient has increased for both Standard and Fast-track care packages, which may reflect a growing number of complex cases requiring more intensive or prolonged care.

Making recommendations for improvement, the Nuffield Trust said NHS and Department of Health and Social Care leaders “urgently” need to improve consistency and fairness in how CHC operates, through better training, sharing good practice and ensuring assessments are conducted in line with national standards.

The think-tank added: “The funding package is intended to help people live in their communities while dealing with health issues, so ensuring fairness is crucial to the government’s aim to shift more care from hospital to community.”

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.”

Responding to the report, the Association of Directors of Adult Social Services (ADASS) President Jess McGregor said: “This report highlights the lack of fairness and consistency in who receives CHC, with deep regional inequalities across the country despite CHC being underpinned by a national framework. 

“Our latest survey found 75 per cent 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 coordination. 

“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. Too many people, at the times when they need the most support, are finding themselves worried about how they and the people they love will cope. This is unacceptable. 

“This is about our rights to free NHS care. Care people are entitled to but are finding it harder and harder to secure. We have to work together find a different way. We can’t expect individual people to go without what they need because our systems can’t find ways to get the money to the right place.”

Lottie Winson