Access to NHS continuing healthcare 'unfair and inconsistent', study finds

Access to NHS continuing healthcare is "unfair and inconsistent", a study has reported.

There are significant local and regional variations in eligibility for and spending on CHC that cannot be fully explained by differences in need or the cost of services, found the Nuffield Trust, in a report published last week.

As a result, people are unfairly facing potentially catastrophic costs from having to fund their own social care, while in other cases local authorities are having to finance packages that should be the responsibility of the NHS, said the think-tank.

The trust noted there had been an overall reduction in the number of people eligible for continuing healthcare in recent years, amid reports from adults' services directors that NHS cuts to CHC are resulting in increased costs being shunted to councils.

On the back of its study, part funded by the Nuffield Foundation, the think tank urged the Department of Health and Social Care (DHSC) and NHS leaders to take action to improve the consistency and fairness of CHC practice, including through spreading good practice and increasing training.

But it also questioned the long-term viability of CHC because of the "cliff-edge" it generated between people having their social care costs fully funded by the NHS, or not. The trust called on the Casey Commission, which is considering the long-term reform of social care, to consider the issue.

Fewer people receiving CHC

The number of people eligible for CHC fell significantly during the pandemic due to a five-month pause in assessments in 2020, before recovering to 55,108 as of September 2021, a similar number to pre-Covid levels, according to NHS England data.

However, the number eligible has subsequently decreased to 50,281 by June 2025, a drop of 8.8% in less than four years.

The bulk of the reduction related to those on the fast-track route, for those nearing the end of life, whose number fell from 20,876 to 16,698 over this period, while the number on standard CHC dropped from 34,232 to 33,313.

As the trust reported in its study, the fall came despite increases in the numbers referred for CHC, which grew from 40,645 per quarter in 2021-22 to 45,823 per quarter in 2024-25.

Tightening of eligibility and loss of CHC

However, not all of those who are referred receive a CHC assessment, with the proportion doing so falling slightly over time, noted the trust. And though 100% of those assessed for fast-track CHC are awarded it, the proportion of those assessed under the standard route who are found eligible fell from 24% in April to June 2021 to 17% in the same period this year.

At the same time, while 25,119 people per quarter were deemed no longer eligible in 2021-22, this increased to 28,196 per quarter in 2024-25, with most of the rise driven by those on the fast-track route.

While in many cases, the people concerned will have died, Age UK reported last year that others will have had their fast-track CHC removed following review because they "did not die as quickly as had been expected".

Increased pressures on adult social care 

According to the Association of Directors of Adult Social Services' (ADASS) latest budget survey, these trends have led to increased pressures on councils in funding the social care of those formerly eligible for CHC or who have not qualified for it in the first place. ADASS reported that:

• 75% of directors had seen a rise in new requests for adult social care from people previously eligible for CHC, while 73% said there had been an increase in requests for care home placements for people with more complex needs due to a tightening of CHC eligibility.
• 49% said there had been a decrease in the number of people qualifying for CHC in their areas.

Huge regional variations in access to CHC

Beneath this national picture, the Nuffield Trust found an almost five-fold variation between NHS integrated care boards (ICBs) in the number of adults who received CHC, from 20 to 95 per 50,000. For standard CHC, the eligibility rate ranged from 10 to 67 per 50,000, while for fast-track CHC, the span was from 6 to 47 per 50,000.

Geographically, rates for standard CHC were generally higher in the north of England - particularly the North West - than the south, with a similar, though less pronounced pattern for fast-track CHC.

In terms of those newly assessed for standard CHC from 2017-18 to the end of 2024, the proportion deemed eligible ranged from 5% to 32%. Between the end of 2022 and the end of 2024, 30 of the 42 ICBs saw this rate fall, from an average of 25% to 18%, while the other 12 saw an increase in the rate.

Link between access and level of need

Researchers found a link between access to CHC within smaller areas below the level of ICBs and population age and deprivation, which the trust said were proxies for levels of need.

The rate of adults found eligible for CHC increased by 4.6 per 50,000 for each 1% increase in the proportion of the population aged 75 and over, and by 1.7 per 50,000 for each increase in the area's deprivation score.

However, its analysis found this accounted for only a "modest proportion" of the variation in access across these sub-ICB areas, with a large amount left unexplained.

Disparities in spending 'not explained by cost'

The trust also found that, despite the falling levels of access nationally, spending on the service rose by 17.1% in real-terms from 2017-18 to 2022-23, taking spending per recipient to £65,185 for standard and £5,225 for fast-track CHC.

However, after adjusting for differences between areas in unavoidable costs, such as buildings and staffing, the think tank found significant variations between ICBs in spending per recipient, from £32,558 to £133,201 for standard CHC and from £1,668 to £27,360 for the fast-track service.

Overall, spending was significantly lower in the North than the South, an issue that was particularly pronounced for standard CHC. For example, eligible recipients in the North West had £22,432 less than the England average spent on them in 2022-23, while those in London had £27,147 more spent on them then the average. Also, average spending per head increased the less deprived an ICB was.

While it stressed that its model did not take account of all differences between areas that were relevant to costs, the trust said its findings suggested that there was a "concerning...inverse care law" in spending per head on CHC, with less deployed in more deprived areas, despite their generally higher levels of need.

What's behind the regional differences?

Based on interviews, focus groups and workshops with CHC, local authority and care provider representatives, and further analysis, the trust concluded that variation in CHC eligibility was likely to be influenced by several factors. These included:

• Organisational differences: some ICBs had one CHC team, with others having five or more, and there were significant variations in the extent to which councils were involved in the running of the service.
• Application of the CHC national framework: while some research participants felt the national framework, which governs CHC practice, was clear, and the issues were with its interpretation, others felt it was subjective and dependent on how people's needs were evidenced.
• Assessment restrictions: some participants cited restrictions such as refusals to conduct assessments for people already receiving NHS-funded nursing care or Mental Health Act aftercare.
• Potential access barriers for some groups: the research identified significant gaps in the quality and consistency of data held by ICBs on patients, particularly in relation to ethnicity and diagnosis. The trust raised concerns about equity of access for different ethnic groups and said that its research suggested that people with learning disabilities, complex mental health needs, frailty, and rare conditions were less likely to receive CHC.
• Variations in fee rates and underfunding of care: multiple providers told the trust that fees paid by ICBs often did not reflect the true cost of care and also reported a lack of communication and dialogue from NHS commissioners on the issue.
• Levels of staff knowledge, experience and training: some participants reported that staff carrying out assessments lacked knowledge of the person and their needs, or of the CHC process generally, which led to differences in outcomes for people with similar needs.
• Financial and workforce pressures: ICB, council and provider representatives consistently reported that budget constraints, driven by increasing levels and complexity of need, shaped CHC decision making, with some saying this was leading to people being found ineligible upon review. They also highlighted the challenges of recruiting nurse assessors to CHC teams, including because of insufficient training and the challenging nature of the work.

Call for increased consistency

On the back of the report, the Nuffield Trust called for urgent action to improve the consistency of CHC assessments.

It called on NHS England to develop practical training on the CHC national framework, based on good practice, co-produced with people with lived experience and covering its application to people with conditions such as dementia or learning disabilities, that should be delivered to key staff groups.

The trust said ICBs needed to improve their data on those assessed and eligible for CHC, including in relation to demographics and referral pathways, while NHS England needed to monitor data at a national level, to identify and tackle inequalities of access.

It also said boards needed to more proactively shape their local social care market, potentially by establishing consistent approaches to fee setting based on level of need, while the DHSC should explore different approaches to funding CHC, such as pooled budgets for councils and ICBs.

Should CHC exist?

However, the trust also concluded that many of the challenges it identified stemmed from the separation of health and social care and "[raised] questions about the very existence of CHC and whether it perpetuates an in-built unfairness where some people’s needs are supported but other people’s needs are not".

This required "comprehensive" reform to create a "fair and resilient" social care system, something it said successive governments had ducked for years.

With the Independent Commission into Adult Social Care, headed by Baroness (Louise) Casey, considering the future of the sector, the trust called on it to make the need of people with complex needs spanning health and social care "a central consideration", learning from how other countries managed the demarcation between the two sectors.

'Unacceptable' stress on people drawing on care

Responding to the findings, ADASS president Jess McGregor said directors were concerned that the NHS was "increasingly balancing its books by taking away care from individual people", placing additional pressure on council adult social care budgets.

"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.

"We have to work together to 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."

Cost-cutting demands 'increasing pressures on CHC'

In response to the findings, the NHS Confederation, which represents health organisations, said leaders were "committed to supporting the most vulnerable and complex patients in their areas", and that the trust's report helped highlight areas for improvement.

However, Sarah Walter, director of the confederation’s ICS Network, said that NHS England's instruction for ICBs to halve their running costs - a move designed to transfer resources to the front line - was increasing pressures on CHC services.

"ICBs’ ambition to deliver the best possible services for those with the most complex needs is being seriously challenged by the very difficult financial and operating environment," she added.

Continuing healthcare eligibility 'based on local need'

For the government, a DHSC spokesperson said that CHC eligibility was "based on the need of the local area", which meant there would "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".

They added: “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.”