What have people told us about Continuing Healthcare?

Continuing Healthcare (CHC) provides NHS-funded support outside hospital for people with high care needs primarily related to their health. 

The principle behind CHC is that those who require more care support because of their health needs should be able to get that care on the same terms as NHS care. It should be free at the point of access and shouldn’t be means-tested.

Yet while the idea behind CHC sounds simple, it can be anything but.

The Nuffield Trust’s new report on Continuing Healthcare shines a light on the postcode lottery, “opaque” rules, and “financial cliff-edges” people face when accessing funding for vital care. What we’ve heard from people who’ve spoken to us also highlights these and other issues.

In this article, we examine what people have shared about their experiences of accessing or trying to access CHC, and recommend changes based on their stories.

Do people know Continuing Healthcare exists?

Many people told us they had never heard of CHC until they stumbled across it online or were tipped off by someone else. Even some professionals seemed unaware of how it worked.

“I only knew about Continuing Care by the posts I had seen on Facebook… No one tells or informs you what is available out there unless you try and find it yourself.” — Story shared with Healthwatch Wigan

This lack of awareness means people often miss out on support they’re entitled to, or only find out about it when it’s too late.

Does where you live affect your ability to get Continuing Healthcare?

We heard from people who were denied CHC in one area but approved after moving just a few miles away. This inconsistency can leave people and their families feeling confused and frustrated.

“Mum had lung cancer… She was bed bound… [CHC] removed funding… They demanded she sign her house and contents over… She moved to live with a family member in another care area who immediately gave her free NHS care.” — Story shared with Healthwatch Cheshire West and Chester

These insights are consistent with the Nuffield Trust report cited above, which found that CHC spending is distributed unevenly across the country. For example, in the North West, £22,432 less was spent on Standard CHC (one of the two types, alongside fast track) a year compared to the national average of £65,012. 

How hard is it to apply for CHC funding?

Applying for CHC, which includes several stages and may take months, can be overwhelming, particularly if the individual is also coping with a health condition. Some have described it as a “full-time job”, involving endless phone calls, paperwork, and long waits for responses. Some have even had to pay for legal help just to get through it.

“We won funding (paying out over £8,000 for legal help) and yet still – over a year after it was agreed that she qualified and five months after she passed away – we have not seen a penny.” — Story shared with Healthwatch Wirral

Others waited years for a decision, or were approved only after their loved one had died.

Are decisions about eligibility consistent?

There is no easy definition of when someone becomes eligible for CHC rather than other social care. A national framework sets out how decisions should be made, based on the nature, intensity, complexity and unpredictability of a condition.

However, people told us they were denied CHC despite meeting the criteria. Some had funding removed after three-month reviews and subsequent annual reviews, even though their needs either hadn’t changed or even worsened.

“I have incurable cancer… My CHC funding stopped… I’ve now run out of money and the care home said they could ask me to leave.” — Story shared with Healthwatch Gloucestershire

Appealing a decision was possible, but often painful and confusing. Throughout, people described a lack of communication and compassion among those involved.

“…we'd been asking time & time again for an NHSCHC reassessment. The only answer people give is “I doubt she’d get it. Nobody gets it.” …The GP said it wasn’t his responsibility, as it was to do with finances. The nursing home said it wasn’t their responsibility.” — Story shared with Healthwatch Medway

Data from NHS England shows that although the average number of people referred for a CHC assessment has not significantly changed since 2017, the percentage of those found eligible has greatly decreased. 

For example, in quarter one of 2017/18, 31% of people assessed for CHC funding were found eligible. The most recent data from quarter one of 2025/26 shows that only 17% of people were found eligible – a 14% reduction. 

What emotional and financial toll can the process take?

The impact of the CHC process can go far beyond paperwork. People told us it added stress and trauma at an already difficult time. Some are still dealing with the emotional fallout.

“Parent now undergoing trauma counselling due to the way they have been treated.” — Story shared with Healthwatch Lincolnshire

The financial burden can also be significant. The costs that CHC covers for individuals who would otherwise pay some or all of the local authority care cost contributions can be substantial. In 2025/26, the average cost of a Council-funded nursing home place for an older adult is £1,089 a week, with many people facing higher costs than this.

We heard from people who were left with huge debts after paying for care they believed should have been covered.

“A family member had to pay over £70,000 out of their own pocket to pay for the care which should have been paid for by the CHC… It’s disgusting. There’s no other way to describe it.” — Story shared with Healthwatch Wirral