In October 2025, Healthwatch England published findings drawn from NHS Continuing Healthcare (CHC) families across every region of England. What they described wasn't a system under pressure. It was a system that has, for many people, quietly stopped working — and that most families only find out about when someone else tells them it exists.
The picture is worse when you look at the numbers. The CHC eligibility rate has fallen from 31% of referrals in 2017/18 to just 17% in Q1 2025/26 — a 14 percentage-point decline in eight years (Healthwatch England, October 2025). Meanwhile, the people losing CHC are increasingly landing in adult social care, with 75% of social care directors reporting more requests from formerly CHC-eligible people (ADASS — Association of Directors of Adult Social Services — Spring Survey 2025).
TL;DR: Healthwatch England found that most families discover CHC through word of mouth, not NHS staff — and that once they do, the process is so burdensome it functions like a second job. CHC eligibility has fallen by 14 percentage points since 2017/18. Healthwatch is calling for mandatory free advocacy support. Families who know their legal rights are significantly better placed to challenge decisions.
Key Facts
- 17% of CHC referrals resulted in eligibility in Q1 2025/26 — down from 31% in 2017/18 (Healthwatch England, October 2025)
- 51,154 adults were eligible for CHC in England in Q3 2025/26, including 17,014 on fast-track (NHS Digital, February 2026)
- 76% of CHC referrals were completed within the 28-day target in Q3 2025/26 — meaning 1 in 4 were not (NHS Digital, February 2026)
- 61% of adult social care directors reported more disputes over CHC decisions in 2025 (ADASS Spring Survey 2025)
- Most deprived areas: £47,300/year per CHC recipient vs £95,085 in least deprived (Nuffield Trust, September 2025)
How Are Families Actually Finding Out About CHC?
Failure to be referred by NHS staff was the single most common experience reported across Healthwatch England's October 2025 findings — families in every region of England described the same pattern (Healthwatch England, October 2025). That's a structural failure, not an individual one. Most families learn about CHC through social media groups or friends, not from a GP, a hospital social worker, or a discharge team.
CHC is a legal entitlement under the NHS Act 2006. It isn't a discretionary benefit or a means-tested fund. If someone has a primary health need, they have a legal right to be assessed. But that right is worthless if no one tells you it exists.
The consequences are real. Families who find out late start the process late. They may have already spent months or years paying for care that the NHS should have covered. Some find out about CHC only when a relative has already died — raising the question of a retrospective claim, which adds yet another layer of complexity.
This information gap isn't accidental. Integrated Care Boards (ICBs) have a financial incentive to keep referral rates low — a CHC assessment that results in eligibility is a cost they have to carry. If families don't know to ask, they don't ask. The Healthwatch finding that word-of-mouth is the primary discovery mechanism is evidence of a system that has never been designed to refer people in. It's designed to process the ones who already found their way.
use our free eligibility screener to check if CHC applies to your situation
Why Do Families Describe the CHC Process as a Full-Time Job?
In Q3 2025/26, 24% of CHC referrals still weren't completed within the NHS's own 28-day assessment target — meaning 1 in 4 families waited longer than the framework requires (NHS Digital, February 2026). Every week of delay is a week a family may be funding care out of pocket. Healthwatch's October 2025 report captures what that burden looks like in practice: the process feels, to many families, like a full-time job.
What the Process Actually Requires of Families
Families who engage seriously with CHC are expected to understand the 12 assessment domains, know which evidence is relevant to each, and present that evidence clearly at an MDT meeting. Most have no clinical training. Most have never encountered the Decision Support Tool (DST) before. Many are also grieving, exhausted, or in crisis.
The Nuffield Trust described CHC in September 2025 as "all or nothing" — a binary decision that either covers all care costs fully or covers nothing at all (Nuffield Trust). That structure means the stakes of every assessment are very high, which raises the pressure on families to get it right first time.
understand what happens at each stage of the CHC process
Winning Isn't Always Enough — What Happens When Families Still Aren't Paid?
Under the National Framework for Continuing Healthcare, ICBs are required to implement appeal decisions promptly — yet Healthwatch England's October 2025 report documented cases across England where families had won CHC appeals and were still waiting for backdated payments (Healthwatch England, October 2025). They'd done everything right. And the money still didn't come.
This matters beyond the individual cases. It tells us that accountability in the CHC system breaks down even at the point where the outcome is no longer in dispute. If an ICB can delay payment after a successful appeal without consequence, the appeal process itself loses some of its force.
Families in this position often don't know they can escalate. The Parliamentary and Health Service Ombudsman (PHSO) can investigate maladministration — including unreasonable delays in implementing appeal decisions. If you've won a CHC appeal and the backdated payment still hasn't arrived, the ICB's own complaints procedure is the first step, but it isn't the last. The PHSO is the next. Most families aren't told this.
understand the CHC appeal process and your rights
What the Numbers Show About a Shrinking System
The eligibility rate decline is the most important number in this story. In 2017/18, 31% of CHC referrals resulted in eligibility. By Q1 2025/26 that figure was 17% — less than half the previous rate, in proportional terms (Healthwatch England, October 2025). This isn't explained by people getting healthier. It reflects tightening eligibility criteria and increasing reluctance to approve cases.
The Nuffield Trust found a near two-to-one spending gap by deprivation. People in poorer areas aren't less ill — they're less likely to receive full funding:
| Area type | Annual CHC spend per recipient |
|---|---|
| Most deprived ICBs | £47,300 |
| Least deprived ICBs | £95,085 |
Source: Nuffield Trust, September 2025
how eligibility rates vary by ICB across England
Where the Rejected Cases Go
The system doesn't make people disappear. It redirects them. ADASS found that 75% of adult social care directors saw more requests from people who had previously held CHC funding (ADASS Spring Survey 2025). When CHC eligibility falls, local authority social care picks up the caseload — but with means-tested funding, which means families start paying care home fees that NHS funding would have covered.
The eligibility decline isn't a neutral administrative outcome. It's a cost transfer from NHS budgets to local authority budgets and, ultimately, to families. The Nuffield Trust's description of CHC as "consigned to the too difficult box" captures this dynamic precisely — it's not that needs have disappeared, it's that the system has decided to stop meeting them.
how council budgets are affected when CHC eligibility falls
why CHC eligibility rates vary so much across England
What Healthwatch Is Calling For — and What Families Can Do Right Now
With 61% of adult social care directors reporting more CHC disputes in 2025 (ADASS Spring Survey 2025), the Healthwatch England report calls for two changes: mandatory free advocacy support for all CHC families, and a defined CHC role in whatever social care reform emerges from current government planning. Both are reasonable demands, and both acknowledge the core problem — that the current system is too complex to work without professional support.
Families can't wait for those reforms. But they're not without options right now.
Your Legal Rights in the CHC Process
You don't need a paid advocate to exercise your legal rights. Under the NHS Act 2006 and the National Framework for Continuing Healthcare, you have the right to:
- Request a CHC checklist assessment at any time
- A full DST assessment if the checklist is positive
- Attend the MDT meeting and contribute evidence
- Receive a written explanation if CHC is refused
- Appeal a negative decision to the ICB
- Escalate unresolved complaints to the Parliamentary and Health Service Ombudsman
The NHS has a 28-day target to complete assessments. If that target is missed, you can request an explanation and raise a formal complaint.
Key Statistic for Reference
CHC eligibility in England fell from 31% of referrals in 2017/18 to 17% in Q1 2025/26 — a 14 percentage-point decline. Healthwatch England, reporting in October 2025 on aggregated family testimony, found that most families only discover CHC through word of mouth rather than NHS staff referral, and described the process as a "full-time job." (Healthwatch England, October 2025)
check whether your relative is likely to be eligible for CHC
What This All Means for Families in the Process Today
With CHC eligibility at just 17% of referrals — its lowest point in eight years, down from 31% in 2017/18 — roughly five in six families referred for assessment won't be approved at first attempt (Healthwatch England, October 2025). That's not a reason to give up. It's a reason to prepare.
The Healthwatch report confirms what families already feel. The eligibility rate has nearly halved in eight years. Most find out too late, through informal channels. The process is exhausting by design rather than by accident. And winning doesn't always mean you've finished.
None of that means the process is hopeless. Families who understand their legal rights, who document their relative's needs carefully, and who challenge decisions they believe are wrong do sometimes win — including at appeal. The National Framework exists precisely because CHC is supposed to be a clinical decision, not a financial one.
If you're at the beginning of this process, the most useful thing you can do is check whether your relative is likely to meet the criteria — before investing months of energy in a case that may not succeed. If you've already been refused, the most useful thing is to understand the specific grounds for refusal, because those grounds can be challenged.
start with the free CHC eligibility screener
Frequently Asked Questions
What did Healthwatch England find about how families discover CHC? Healthwatch found that most families only learn about CHC through social media or word of mouth — not from NHS staff. That's a significant failure, given that CHC is a legal entitlement. Every eligible person has the right to a checklist assessment, and NHS staff are supposed to refer people automatically.
Is CHC eligibility really falling across England? Yes. The eligibility rate dropped from 31% of referrals in 2017/18 to 17% in Q1 2025/26 — a 14 percentage-point fall in eight years, according to Healthwatch England (October 2025). In the same period, adult social care referrals from formerly CHC-eligible people increased significantly, shifting costs to councils.
What does "the process is a full-time job" actually mean in practice? Families described spending hundreds of hours gathering medical records, attending MDT meetings, writing evidence submissions, and chasing ICBs for responses. Many are already caring for a seriously ill relative at the same time. Healthwatch called for mandatory free advocacy support to address this burden.
Can families be left unpaid after winning a CHC appeal? Yes. Healthwatch found cases where families had won appeals but were still waiting to receive backdated payments from the ICB. Winning the legal argument doesn't always mean the money follows promptly — families sometimes face a further battle to enforce the decision.
What legal rights do families have in the CHC process? Under the NHS Act 2006 and the National Framework for CHC, families have the right to request a checklist assessment, to a full DST assessment if the checklist is positive, to attend the MDT meeting, and to appeal a negative decision to the ICB and beyond. These rights exist regardless of whether you have a paid advocate.