Charities call for an independent review of NHS Continuing Healthcare

On 20 October 2026, 14 health and care charities delivered a joint letter and a petition signed by more than 26,000 people to the Department of Health and Social Care. Their message was clear: NHS Continuing Healthcare (CHC) is not working as it should for the people who need it most.

The charities, led by Dementia UK, include Parkinson's UK, the MS Society, Carers UK, Carers Trust and Muscular Dystrophy UK. Together they represent many thousands of families living with dementia, neurological conditions and complex disabilities.

At Compass CHC, we hear every day from families who have found the CHC process confusing, exhausting and, too often unfair. So, we welcome this call and explain what it could mean for you and your loved ones.

The joint letter, addressed to the Health and Social Care Secretary, makes one key request:

"We urge the Government to commit to a full and independent review of NHS Continuing Healthcare and publish a clear timetable for its completion. This must begin now, alongside the development of the National Care Service."

The charities welcome the Government's commitment to a National Care Service in the next Parliament. But they are concerned that CHC, which is funded by the NHS rather than social care, could be left behind if it is not reviewed at the same time.

NHS Continuing Healthcare is designed to fully fund the care of people whose needs are primarily health needs. In practice, many families tell us that getting a fair assessment feels like a battle.

The charities point to concerns we recognise from our own work:

• Fewer people are being found eligible. Research by the Nuffield Trust shows that the number of people eligible for CHC has fallen over time.
• Where you live can affect the outcome. The same research found significant variation across England that cannot be fully explained by differences in local populations.
• The system is hard to understand. Even Baroness Louise Casey, who chairs the Government's independent commission on adult social care, has described the current CHC system as "astonishing" and "inexplicable".

For families caring for someone with dementia, Parkinson's, MS or another progressive condition, these are not abstract problems. They can mean paying for care that the NHS should be funding.

A review would be welcome news, but it has not been agreed yet. Even if it is, change will take time. Baroness Casey's report on a National Care Service is not expected until summer 2027, and any new system would follow after that.

For families currently paying for care, the key message is simple: nothing has changed yet. The current NHS Continuing Healthcare rules still apply today, and so does your right to challenge a decision.

That means:

• If your loved one has complex or changing health needs, they may be eligible now
• If you have been turned down, you may be able to appeal the decision
• If you have already paid for care, you may be able to make a retrospective claim for fees paid in the past.

Waiting for reform could mean months or years of care fees that you may not need to be paying.

Kia Warren, Legal Services Director at Compass CHC, said:

"We welcome this call from the charities. An independent review could make the system fairer and more consistent, but families shouldn't put their lives on hold waiting for it. The current rules still apply, and people still have the right to be properly assessed and to challenge a decision they believe is wrong. Our message to families is simple: if you're unsure, please ask. You don't have to navigate this on your own."

We understand how stressful the CHC process can feel, especially when you are already caring for someone whose needs are changing. Our specialist team can help you:

• Understand whether your loved one may qualify for NHS Continuing Healthcare
• Prepare for assessments, including the Checklist and Decision Support Tool (DST)
• Challenge an NHS CHC decision where appropriate
• Explore a retrospective claim for care fees already paid.

We can provide a free, confidential and no-obligation consultation to talk through your situation and the options available.