Skip to content
  • Home
  • Fair CHC assessment
  • Problems with CHC
  • CHC outcomes by area
  • Research Review
  • Privacy Policy
  • Cookie Policy (UK)

NHS Continuing Healthcare: evidence, experience and the case for reform

NHS Continuing Healthcare (CHC) in England sits at a difficult boundary between NHS-funded healthcare and means-tested social care. Decisions about eligibility can have profound consequences for people with substantial care needs and for those supporting them.

Research, parliamentary scrutiny, Ombudsman investigations and published statistics identify concerns about access, assessment, communication, delays and accountability. Our family’s experience adds a personal account of trying to understand and challenge decisions within that system.

These sources offer different kinds of evidence. National figures describe activity and variation; investigations demonstrate particular failures; personal accounts explain how processes are experienced. Together, they support scrutiny and reform, while requiring care about what each can establish.

Why CHC needs reform

The evidence presented here identifies geographical variation, documented failures, delays and substantial consequences for individuals and families. These findings support reform, while leaving important questions about the causes of variation and the quality of individual decisions.

Greater scrutiny must follow the evidence through the assessment process: what needs were identified, how observations and professional opinions were recorded, how disagreements were handled and whether the reasoning supports the final decision.

Reform should combine fair access, accurate records, transparent decisions, timely remedies and publicly accountable assurance. Our family’s experience illustrates the difficulty of establishing what scrutiny took place and what it achieved.

Explore this page

Access and funding Assessment Statistics Complaints and challenges Our family’s experience Reform Supporting reports

1. A national entitlement with unequal access

Age UK’s December 2024 briefing reported that the proportion of CHC assessments resulting in eligibility ranged from 3.4% to 57.9%, depending on location—a difference of 54.5 percentage points. These are assessment outcome percentages, rather than the proportion of residents receiving CHC.

The Nuffield Trust’s 2025 research found that age and deprivation explain some geographical variation, but do not explain it fully. It identified influences including local approaches, knowledge of CHC, referral patterns and relationships between organisations.

The concern is whether people with comparable needs have comparable opportunities to obtain funding.

For example, two people with advanced dementia may both require assisted feeding, pressure-area care, medication administration and monitoring for deterioration. Differences in how evidence is collected, needs are described or interactions between needs are understood could affect their assessments.

Establishing whether their decisions were inconsistent would require examination of their individual evidence. A shared diagnosis alone would not establish comparable needs.

Sources and further reading

Nuffield Trust (2025) — Read report Age UK (2024) — Read findings

Both sources open in a new tab.

Geographical variation warrants investigation and assurance. It cannot, by itself, determine whether an individual decision was correct.

2. The funding cliff edge between health and social care

CHC operates at the boundary between NHS-funded healthcare and means-tested social care. An eligibility decision can therefore have a substantial financial effect even where a person continues to require extensive care.

The Nuffield Trust identifies this “all or nothing” boundary, together with divided funding and accountability, as a fundamental structural problem. People whose needs span both systems can become caught between them.

A person may require continuous care in a nursing home before and after an eligibility decision. If eligible for CHC, their assessed package is NHS-funded. If ineligible, funding may involve a local authority financial assessment, personal contributions and NHS-funded Nursing Care where applicable.

The care remains necessary, but responsibility for paying can change substantially.

This helps explain why eligibility disputes become so consequential. Families are trying to secure continuity of care while also managing uncertainty about funding and the person’s resources.

Sources and further reading

Nuffield Trust (2025) — Read report National Framework — Read guidance

Links open in a new tab.

Further evidence from The King’s Fund

The King’s Fund examines how divided funding and accountability can leave people caught between health and social care. Its analysis also identifies inappropriate CHC refusals as a potential transfer of costs to councils or individuals.

The King’s Fund — Experiences between health and social care The King’s Fund — Financial pressures and patient care

Both sources open in a new tab.

3. Financial pressure requires transparent safeguards

The Public Accounts Committee’s 2018 report questioned how £855 million in planned efficiency savings across CHC and NHS-funded Nursing Care could be achieved without raising eligibility thresholds or limiting care packages. It warned of risks to patient safety.

The Nuffield Trust subsequently reported concerns about financial pressures influencing CHC’s operation.

These findings justify scrutiny of savings programmes, commissioning decisions and governance. They do not establish that every refusal is financially motivated.

Effective scrutiny should examine:

  • How savings are expected to be achieved.
  • How eligibility assessments and care-package commissioning are distinguished.
  • What checks identify inappropriate changes in access or provision.
  • How consequences for individuals are monitored.

Eligibility reasoning must remain grounded in the person’s needs, with a clear record of how the conclusion was reached.

Sources and further reading

Public Accounts Committee (2018) — Report page Nuffield Trust (2025) — Read report

Links open in a new tab.

4. Complexity can become a barrier to participation

The Public Accounts Committee found that some people were missing out because they were unaware of CHC or could not navigate its complicated process. It also raised concerns about communication and inadequate support.

Families may need to understand unfamiliar concepts such as primary health need, the Decision Support Tool, domain levels and local resolution while supporting someone who is seriously ill.

A relative might describe someone as “unable to do anything for themselves”. That conveys profound dependency, but an assessment also needs to establish the interventions required, their frequency, associated risks, monitoring and interactions between needs.

Families should receive support to contribute this information. Their observations should be explored and translated into an accurate assessment without requiring them to master professional terminology.

Clear explanations, accessible documents and meaningful participation are essential to a fair process.

Sources and further reading

Public Accounts Committee (2018) — Report page Decision Support Tool — Read guidance

Links open in a new tab.

5. Assessing the whole person requires more than domain scores

The Decision Support Tool helps organise evidence across care domains. It must be informed by a comprehensive, current assessment and cannot replace that assessment.

The recommendation requires consideration of the totality of needs through the four characteristics:

Characteristic What the assessment needs to examine
Nature The type and features of the needs, and the care required to address them.
Intensity The amount, severity and continuity of care or support required.
Complexity How needs interact and increase the skill required to manage care.
Unpredictability Changes in needs, difficulty anticipating them and the risks if care is not provided appropriately or promptly.

Domain scores inform this judgement. The reasoning must still explain how the evidence supports the recommendation.

For example, swallowing difficulties, impaired communication and severe cognitive impairment may interact. A person may be unable to follow instructions, explain discomfort or reliably report symptoms. Feeding support must therefore be understood alongside cognition, communication and the risks requiring monitoring.

This does not establish eligibility in any particular case. It demonstrates why needs must be considered together.

Sources and further reading

National Framework — Read guidance Decision Support Tool — Read guidance

Links open in a new tab.

6. Successful care can make continuing needs less visible

Needs should not be discounted simply because care manages them successfully. Assessment must also distinguish continuing managed needs from needs that have genuinely reduced.

A person may have intact skin because they receive regular repositioning, pressure-relieving equipment and skin checks. Intact skin is a positive outcome. The assessment should also record the continuing preventative care and the risks it addresses.

Similarly, a settled presentation may depend on skilled support, an adapted environment or a consistent routine.

The assessment should record the preventative care being delivered, why it remains necessary and the needs and risks it manages. However, domain levels should reflect the person’s actual circumstances and the relevant descriptors. For example, intact skin supported by good continence care should not be scored as though skin damage were present because that care had been withdrawn. The continuing care must be recognised without assuming complications that are not present.

A good outcome needs to be understood alongside the care required to sustain it.

Sources and further reading

National Framework — Read guidance Decision Support Tool — Read guidance

Links open in a new tab.

7. Delays affect finances, planning and confidence

The project’s statistical comparison reports worsening national referral timeliness between the first two calendar quarters of 2026.

Table 1. Standard CHC referral timeliness in England, January–March and April–June 2026.
England: Standard CHC measure January–March 2026 April–June 2026
Completed referrals exceeding 28 days 25.8% 32.6%
Overdue incomplete referrals at quarter end 1,373 2,229

The number of overdue incomplete referrals increased by 62.3% between these snapshots.

The completion measure includes referrals discounted before assessment. It should therefore not be described solely as the timeliness of completed DST assessments.

For families, a delay may mean continuing to meet care costs without knowing whether funding will be agreed or reimbursement will apply. Seeking updates becomes another responsibility alongside supporting the person.

The eligibility decision is also only one stage. Notification, implementation of care arrangements and resolution of a challenge can introduce further uncertainty.

These figures identify increased delays in the selected periods. They do not establish the causes or measure every subsequent stage.

Source and further reading

NHS England — CHC and FNC data collection

Link opens in a new tab.

8. Local figures identify questions for investigation

Selected Standard CHC assessment outcomes show differences across areas and periods.

Table 2. Standard CHC assessments resulting in eligibility: England, Cheshire and Merseyside and Warrington, selected quarters in 2024 and 2026.
Area January–March 2024 January–March 2026 April–June 2026
England 2,624/12,627
20.8%
2,075/12,462
16.7%
2,295/13,001
17.7%
Cheshire and Merseyside 224/877
25.5%
146/735
19.9%
131/783
16.7%
Warrington 13/46
28.3%
8/50
16.0%
6/65
9.2%

Warrington’s latest result represents six eligibility outcomes among 65 completed assessments.

These figures cannot establish why outcomes changed. Possible influences include the needs of those referred, referral selection, reporting and assessment practice. Smaller numbers also make local percentages more susceptible to fluctuation.

England’s total includes Cheshire and Merseyside, which includes Warrington. These are overlapping geographical populations.

The figures provide a basis for asking how local practice is examined and whether differences are adequately understood. They cannot determine an individual’s eligibility.

Explore CHC outcomes in your area

Compare Standard CHC assessment outcomes across England, view quarterly figures from April 2017 to June 2026, and download the data. Counts, sources and limitations are included.

Compare CHC outcomes by area

Source and further reading

NHS England — CHC and FNC data collection

Link opens in a new tab.

9. Standard CHC and Fast Track need separate examination

A combined CHC total can conceal different movements in the two pathways.

Table 3. CHC recipients in England at quarter end, by pathway: December 2016 and June 2026.
England: recipients at quarter end December 2016 June 2026 Relative change
Standard CHC 41,607 33,972 −18.4%
Fast Track CHC 17,116 18,169 +6.2%
Combined CHC 58,723 52,141 −11.2%

These are two selected snapshots. They do not establish a continuous trend or explain the causes of change.

Age UK has raised concerns about a shift towards shorter-term, end-of-life funding.

Fast Track is an essential pathway for people with a rapidly deteriorating condition who may be entering a terminal phase. It should remain accessible to those meeting its criteria.

The separate question is whether people with continuing needs are obtaining appropriate access through Standard CHC. Changes in Fast Track recipient numbers cannot answer that question.

Sources and further reading

NHS Digital — October–December 2016 data NHS England — CHC and FNC data collection Age UK (2024) — Read findings

The historical publication provides the December 2016 figures. The NHS England collection provides the June 2026 figures. All links open in a new tab.

10. Eligibility challenges and complaints require distinct scrutiny

An eligibility challenge and a complaint about communication or administration address different questions. Local resolution, NHS England independent review and Ombudsman scrutiny also concern different stages and responsibilities.

In April–June 2026, the published figures recorded:

Table 4. Completed CHC local-resolution requests resulting in eligibility: England and Cheshire and Merseyside, April–June 2026.
Area Completed local resolution requests Outcomes resulting in eligibility Percentage
England 666 92 13.8%
Cheshire and Merseyside 55 4 7.3%

These percentages are neither an overall appeal success rate nor a national decision-error rate.

Warrington recorded no completed local resolution requests in that quarter. A percentage cannot be calculated with a zero denominator. This does not establish that there were no disputes or outstanding cases.

A family may challenge an eligibility decision while separately complaining about delayed correspondence. Reporting should make clear whether eligibility was reconsidered, whether administrative concerns were addressed and what remained unresolved.

Sources and further reading

NHS England — CHC and FNC data collection PHSO (2020) — Getting it right first time

Links open in a new tab.

11. Workforce knowledge, evidence quality and accountability matter

Reliable assessment depends on the quality of the evidence available and the judgement applied to it.

Care records need to describe what staff observe, what interventions they provide, how frequently care is required and what happens when needs change. Sparse or imprecise records can make the care burden and associated risks difficult to establish.

For example, “resists care” may be an incomplete description. Distress might relate to pain, fear, impaired understanding or difficulty communicating. Establishing the context helps explain both the need and the response required.

Appropriate assurance should examine:

  • Assessors’ ability to apply the Framework to complex cases.
  • Access to relevant specialist advice.
  • Supervision when professional opinions differ.
  • Accuracy and consistency of records.
  • Whether final recommendations faithfully represent the evidence and discussion.
  • How complaints and overturned decisions inform learning.

An unfavourable decision does not itself demonstrate misconduct. Equally, attendance at training does not establish that guidance was applied competently in a particular assessment.

Sources and further reading

National Framework — Read guidance Decision Support Tool — Read guidance Independent assessment-practice review (PDF)

Links open in a new tab.

12. Documented failures have serious human consequences

PHSO’s 2020 report drew on 60 selected resolved CHC cases. It identified significant failures in care planning and retrospective reviews, including unnecessary care payments, unmet needs and prolonged financial and emotional distress.

These cases demonstrate how failures can occur and the harm they can cause. They do not measure the proportion of all CHC applicants experiencing those failures.

Age UK also describes fear around reassessment and warns that better-resourced families are more able to fight for their rights.

A fair system must be accessible to people who lack the time, confidence, resources or support to sustain a lengthy challenge.

Sources and further reading

PHSO (2020) — Getting it right first time Age UK (2024) — Read findings

Links open in a new tab.

13. Retrospective guidance must translate into accessible decisions

National guidance for previously unassessed periods of care from April 2012 onwards was published on 14 December 2023. It explains how ICBs should approach requests concerning past periods when individuals funded their own care.

Its practical value depends on implementation:

  • Are people told how to request an assessment?
  • Is evidence gathered and considered consistently?
  • Are decisions clearly explained?
  • Are progress and delays communicated?
  • Where eligibility is established, is reimbursement addressed appropriately?

Publishing guidance is an important step. People must also be able to use it and obtain a timely, reasoned outcome.

Source and further reading

Previously unassessed periods of care — National guidance

Link opens in a new tab.

Our family’s experience: seeking an explanation

Account updated: 15 October 2026

Seeking a clear explanation should not become another burden of care.

For almost a year, I have sought parliamentary assistance with my mother’s CHC funding and the wider concerns arising from her experience.

My MP’s office has repeatedly contacted the organisations involved, pursued outstanding replies and forwarded evidence. I am grateful for that persistence, including the recent correspondence and further escalation to the Secretary of State for Health and Social Care.

There has been practical progress. The unresolved question is what scrutiny examined the withdrawal of eligibility after an earlier successful independent appeal, and what that scrutiny established.

Eligibility reinstated, confirmed and withdrawn again

In 2023, an NHS England Independent Review Panel concluded that my mother had a Primary Health Need. NHS England accepted its recommendation, found the earlier decision unsound and CHC funding was reinstated.

The ICB reviewed her needs in April 2024. Its letter issued the following month confirmed continued eligibility.

Following a further assessment in May 2025, the ICB again found her ineligible.

I challenged that conclusion. From my observations and the evidence available to me, I could identify no material improvement explaining the change. Her condition had continued to deteriorate.

I wanted to understand how the later evidence supported withdrawal, how the earlier independent findings had been considered and what scrutiny had tested the reasoning.

October–December 2025: parliamentary assistance and local review

I first contacted my mother’s MP in October 2025. The office raised the case with the ICB in November and chased an outstanding response in December.

A Local Resolution Meeting was arranged for December at short notice, making participation difficult alongside my NHS clinical work.

Afterwards, I questioned a reviewer’s previous involvement in the earlier independent review and how that involvement had been disclosed and managed. I sought clarification; the correspondence alone does not establish a conflict of interest.

I subsequently reported being advised of a possible further ten-week wait for the outcome.

January–February 2026: further scrutiny and escalation

In January, my advocate reported that the ICB’s Assurance Panel had raised queries and planned a further meeting. The local review outcome was issued in February and upheld the withdrawal.

Review activity therefore occurred. What remained unclear was how it addressed the specific concerns raised.

During February, I supplied a structured evidence bundle for parliamentary escalation. It included the earlier independent findings, NHS England’s acceptance, later assessment and review documents, and the 2024 confirmation of eligibility.

The MP’s office confirmed receipt, obtained consent to share the documents and escalated the concerns to NHS England and the Department of Health and Social Care.

February–June 2026: explanations of the system

NHS England’s February response acknowledged acceptance of the earlier independent recommendation and explained assessment, reassessment and challenge routes.

A ministerial response in March described CHC policy, appeals and monitoring arrangements.

I explained that the outstanding concern was the subsequent withdrawal and the scrutiny applied to it. The earlier recommendation had already been accepted.

Further escalation followed in April. NHS England’s May reply described safeguards surrounding reassessment and withdrawal. Another ministerial response referred to acceptance of independent review recommendations and general assurance arrangements.

These explanations were relevant, but did not identify who had examined the justification for the later decision, what evidence they considered or what they concluded.

I clarified the distinction again in May and June. A further departmental referral was confirmed in June. I have not identified a substantive response to that particular referral in the records reviewed so far.

July–September 2026: repeated disruption

Alongside the appeal against the May 2025 decision, a separate assessment of my mother’s current needs was being arranged.

The July assessment was cancelled shortly before the appointment because of uncertainty about local authority involvement. I had arranged leave and travelled to the care home before learning of the cancellation.

The ICB apologised, acknowledged that it should have telephoned as well as emailed, and said improvement measures were being implemented. Its response did not specify those measures.

The independent appeal hearing scheduled for August was then cancelled. A September replacement was also postponed.

NHS England subsequently explained that it had been unable to secure the required local authority representative. Its final complaint response acknowledged unacceptable delays and the distress caused.

The consequences included repeated preparation, rearranged clinical commitments and annual leave, further correspondence and continuing uncertainty while my mother deteriorated.

A new hearing offer

My advocate continued to pursue explanations and replacement dates. In early September, I also reported that the ICB had become more responsive following my complaint.

A November date was initially offered. NHS England subsequently offered 27 October 2026 at 2pm with a full panel and confirmed receipt of the necessary documentation.

I accepted the October offer on 2 October and asked my advocate to confirm attendance.

This was meaningful progress. At the time of this update, the hearing has yet to take place and the eligibility dispute remains unresolved.

Differing accounts of the arrangements

An NHS England response forwarded by my MP’s office on 14 October described a replacement hearing date as awaiting confirmation once staffing difficulties were resolved.

By then, correspondence supplied through my advocate had already offered the October hearing, and I had accepted.

The accounts did not align.

The response’s preparation date and the information available to its author need to be established before conclusions are drawn about how this happened. Nevertheless, the information received through the parliamentary route did not reflect the latest arrangements communicated to me.

Families and parliamentary offices need accurate, current information. Where circumstances change after a reply is prepared, that change should be explained.

The separate September assessment

A new assessment took place in September 2026 and again resulted in a finding of ineligibility.

I have raised concerns about whether the final record faithfully represents the evidence, professional opinions and discussion. These include the recording of professional recommendations, differing domain assessments and the reasoning supporting the outcome.

In October, I requested a specific quality assurance review. Those concerns remain disputed and unresolved.

This assessment is separate from the appeal against the May 2025 decision. Progress with the October hearing does not resolve the newer assessment dispute.

What remains unanswered

The Ombudsman has advised that consideration of the complaint must await the independent review report, including consideration of delays in handling the appeal.

The eligibility dispute therefore remains unresolved, while scrutiny of its administration is deferred.

The correspondence establishes that concerns were repeatedly raised, evidence was supplied, review activity occurred and practical progress followed. It does not, by itself, determine whether the disputed eligibility decision was correct.

What remains missing is a clear account of who examined the concerns, what evidence they considered, what they concluded and what action followed.

I remain grateful to those who have assisted. Families should be able to obtain accurate information and a reasoned explanation without spending months reconstructing the process while supporting a vulnerable relative.

This personal account draws on retained correspondence and supporting documents. It distinguishes official statements, my observations and concerns, and unresolved matters. Personal identifiers and case references have been omitted.

Why reform must include greater scrutiny of the assessment process

CHC reform requires greater scrutiny of how decisions are actually reached. Published guidance and aggregate statistics cannot demonstrate whether an assessment accurately identifies needs, represents the evidence or applies the eligibility criteria consistently.

The process involves successive judgements: what information is collected, whose observations are accepted, how needs are described, which domain levels are selected and how the four characteristics are interpreted. Each stage can affect the recommendation. A complete document may still contain incomplete evidence or reasoning that does not adequately support its conclusion.

Scrutiny must examine the route from evidence to decision. It should establish:

  • Whether care records accurately describe needs, interventions, frequency, risks and changes.
  • Whether missing documentation is mistaken for an absence of need.
  • Whether family observations and specialist evidence are properly considered.
  • Whether successful care obscures the continuing support required.
  • Whether domain levels reflect the evidence and descriptors.
  • Whether professional disagreements are recorded faithfully.
  • Whether changes made after the assessment are identifiable, explained and appropriately agreed.
  • Whether the final reasoning addresses interacting needs and supports the recommendation.

The four characteristics require professional judgement. That makes transparent reasoning and effective challenge essential. Scrutiny should be capable of distinguishing reasonable differences of opinion from unsupported interpretation, selective recording or changes that steer the conclusion.

An appeal route offers a potential remedy after a disputed decision. Effective quality assurance should also identify problems before families have to pursue that remedy.

Reform should require a traceable record of the evidence, professional contributions, material changes and reasons for the final decision. Independent audits should examine both eligible and ineligible outcomes, with findings and corrective actions reported publicly in anonymised form.

The test of accountability is whether an organisation can demonstrate how it checked the assessment, what it found and what it corrected. Describing the existence of a safeguard is only the starting point.

Questions about assessment records, disagreement and scrutiny

What assessment documents should I receive?

National guidance says the completed Decision Support Tool (DST), including the multidisciplinary team’s recommendation, should accompany the final eligibility decision and its reasons. Where a representative receives this information, an appropriate basis for sharing it must be established.

What if the care records leave out important needs?

Identify the omissions in writing, with dates and supporting examples. Ask how they will be investigated and reflected in the assessment. The DST should draw on a comprehensive assessment, relevant specialist evidence and contributions from people who know the person’s needs. A gap in documentation needs investigation.

What happens when professionals disagree?

Significant differences about domain levels should be recorded with the evidence. If, after considering all relevant evidence, the team still cannot decide or agree between levels, DST guidance says to select the higher level under consideration. This does not automatically determine overall eligibility.

What should I ask if the final DST differs from the meeting?

Identify the passages that differ and ask what changed, who made the changes, why, and whether the multidisciplinary team agreed. Request a written explanation and ask for your concern to be recorded. A difference warrants explanation; it does not, by itself, establish deliberate manipulation.

What would meaningful scrutiny examine?

This project proposes checks that follow the evidence through to the final decision: missing information, family contributions, professional disagreement, material changes and the reasoning about interacting needs. Organisations should explain what they checked, what problems they found and what they corrected.

Read the national guidance: NHS Continuing Healthcare Decision Support Tool guidance — particularly paragraphs 18–25 and 43–44.

What needs to change?

Priority What improvement should achieve
Consistent assessment Comparable needs considered through a reliable national approach, with unexplained variation investigated.
Meaningful participation Individuals and representatives supported to contribute, correct inaccuracies and understand decisions.
Clear reasoning Recommendations explain the evidence, interactions between needs and professional judgement.
Reliable records Final documents accurately represent evidence, professional opinions and discussion, with material changes explained.
Timeliness Assessments, decisions, care arrangements and challenges progress without avoidable delay.
Workforce assurance Training, supervision and specialist support underpin competent practice.
Transparent reporting Assessments, delays, complaints and eligibility challenges are reported distinctly and interpreted accurately.
Financial safeguards Scrutiny examines whether cost pressures affect access or care provision.
Accountability and learning Complaints, disputed records and overturned decisions lead to identifiable review and improvement.
Wider funding reform People receive publicly funded care according to need, without financial penalties arising from the boundary between health and social care.

The combined evidence supports reform across the whole CHC journey.

These are priorities arising from the evidence and experience described here. Their effectiveness requires evaluation.

CHC should provide fair access to NHS funding through an understandable, timely and accountable process. Achieving that requires attention to both assessment practice and the funding structure that makes eligibility decisions so consequential.

Sources and evidence notes

The principal sources informing this page are:

  • Nuffield Trust (2025): All or nothing? Access and variation in NHS continuing health care .
  • Age UK (2024): Findings accompanying Continuing to care? Older people let down by NHS Continuing Healthcare . The December 2024 parliamentary briefing is also available through Age UK’s parliamentary briefings page .
  • Public Accounts Committee (2018): NHS continuing healthcare funding .
  • Parliamentary and Health Service Ombudsman (2020): Continuing Healthcare: Getting it right first time .
  • The King’s Fund: The experience of patients at the interface of health and social care .
  • The King’s Fund: Six ways NHS financial pressures can affect patient care .
  • Department of Health and Social Care: National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care .
  • Department of Health and Social Care: NHS continuing healthcare Decision Support Tool guidance .
  • Department of Health and Social Care and NHS England: National guidance on previously unassessed periods of care .
  • NHS England: NHS Continuing Healthcare and NHS-funded Nursing Care statistical collection .

All external links open in a new tab. Publication dates and reporting periods should be considered when interpreting the evidence.

The project’s supporting analyses provide the statistical comparisons, complaints analysis, assessment-practice evidence and standards summary used here.

Guidance describes expected practice. Statistics describe reported activity. Research and investigations examine particular questions and experiences. Each requires interpretation within its scope.

The aggregate statistics are not dementia-specific and cannot determine an individual’s eligibility. Historical and quarterly figures retain their stated reporting periods. Selected snapshots should not be treated as a complete time series.

The supporting reports are available below. The full literature review provides further source entries, analysis and limitations.

The central question: how well are CHC decisions scrutinised?

Across the evidence considered on this website, a recurring concern emerges: how can we establish whether individual CHC eligibility decisions are properly supported by the evidence?

Statistics describe access, expenditure and regional differences. Surveys describe satisfaction and experiences. Organisational reports describe efficiency and savings. These are useful, but they do not establish whether a person’s needs were accurately recorded, professional disagreements were properly addressed, or the final decision followed logically from the evidence.

That requires scrutiny of the decision-making itself: the assessment underlying the Decision Support Tool (DST), the multidisciplinary team’s (MDT) discussion and recommendation, and the Integrated Care Board’s (ICB) final reasoning. It means examining what was included or omitted, how managed needs were understood, whose judgments prevailed and why.

Completing the required paperwork does not, by itself, demonstrate that the resulting decision was justified. Equally, dissatisfaction or an unfavourable outcome does not, by itself, establish that a decision was wrong. Both require examination of the evidence and reasoning.

The material reviewed here leaves an important gap: limited visibility of systematic, independent scrutiny of the quality of these decisions, beyond individual challenges and selected investigations. Appeals can expose failures, but they depend on families having the knowledge, time and resilience to pursue them.

Measure what happened, not simply how satisfied people felt

ICBs seeking to monitor and improve CHC services should prioritise experience measures over satisfaction ratings. Questions should establish what happened at each stage: whether people received understandable information in time to prepare, could contribute evidence, had their concerns addressed, and received an accurate record and a clear explanation of the decision.

Rather than asking only “How satisfied were you with your assessment?”, ask:

  • Were you told what evidence you could submit and given enough time to prepare?
  • Did the assessment record accurately reflect the needs and care you described?
  • If you identified an error or omission, were you told how it was addressed?
  • Were disagreements explained and accurately recorded?
  • Did the decision letter explain how the evidence supported the outcome?
  • Were you kept informed about delays and told how to challenge the decision?

Responses should allow people to explain what happened in their own words, with “not applicable” and “not sure” options where appropriate. Feedback should include people awarded funding, refused funding, awaiting decisions and those who withdrew or abandoned a challenge.

Experience measures should sit alongside independent examination of assessment records and decision reasoning. Public feedback can identify problems requiring investigation; it cannot, on its own, establish whether an eligibility decision was correct. Findings should lead to published improvement actions and checks that those actions made a difference.

A credible assessment of CHC must therefore ask more than whether procedures were completed or costs reduced. Can the decision be independently reconstructed, tested against the evidence and explained to the person whose care depends on it?

Supporting reports

These independent reports provide the detailed analysis supporting this page. Each includes its sources, methods and limitations.

  • Statistical comparisons of CHC access, assessment outcomes and delays — Download PDF
  • Complaints and eligibility challenges — Download PDF
  • Assessment practice and evidence quality — Download PDF
  • Assessment standards and national guidance — Download PDF

Citing and using this evidence

You are welcome to link to these reports and quote brief extracts with attribution. Please identify the report used, retain the relevant reporting periods and limitations, and direct readers to this page.

Suggested citation format

Continuing Healthcare: Evidence and Experience (2026). [Full report title]. Version 1.0, 15 October 2026.

Available at:

https://watkin.care/what-is-going-wrong-with-nhs-continuing-healthcare-2/

Replace [Full report title] with the title of the report you use. Check its version and publication date against the downloaded report.

  • Credit the underlying source. When reproducing NHS figures, cite the relevant NHS England or NHS Digital publication as well as this project’s analysis. Follow the original source’s reuse terms.
  • Keep the measure clear. Distinguish Standard CHC, Fast Track and NHS-funded Nursing Care. Specify whether figures concern assessments, referrals, recipients or local-resolution requests.
  • Preserve context. Include the reporting period, geographical area, numerator and denominator where applicable. Selected snapshots should not be presented as a complete trend.
  • Represent the findings accurately. Aggregate differences do not determine individual eligibility or establish a national decision-error rate.
  • Identify the publication correctly. These are independent reports, not NHS publications or peer-reviewed studies. Personal accounts should be identified separately from research and statistical findings.

For source queries, corrections or enquiries about reproducing longer extracts, tables or graphics, contact admin@watkin.care. Please include the report title, version and relevant page or table.

About this information

This independent website concerns NHS Continuing Healthcare in England and is not affiliated with the NHS.

The material provides information and analysis. It cannot determine eligibility or replace legal, clinical or financial advice about an individual case. Check current official guidance and the deadlines stated in decision correspondence.

For practical explanations and sources of specialist support, see Understanding a fair CHC assessment, including its further-help section.

On this page

  • Access and funding
  • Assessment
  • Statistics
  • Complaints and challenges
  • Our family’s experience
  • Scrutiny and reform
  • Decision-making and scrutiny
  • Supporting reports

© 2026 watkin.care · Continuing Healthcare: Evidence and Experience

Manage Consent
To provide the best experiences, we use technologies like cookies to store and/or access device information. Consenting to these technologies will allow us to process data such as browsing behavior or unique IDs on this site. Not consenting or withdrawing consent, may adversely affect certain features and functions.
Functional Always active
The technical storage or access is strictly necessary for the legitimate purpose of enabling the use of a specific service explicitly requested by the subscriber or user, or for the sole purpose of carrying out the transmission of a communication over an electronic communications network.
Preferences
The technical storage or access is necessary for the legitimate purpose of storing preferences that are not requested by the subscriber or user.
Statistics
The technical storage or access that is used exclusively for statistical purposes. The technical storage or access that is used exclusively for anonymous statistical purposes. Without a subpoena, voluntary compliance on the part of your Internet Service Provider, or additional records from a third party, information stored or retrieved for this purpose alone cannot usually be used to identify you.
Marketing
The technical storage or access is required to create user profiles to send advertising, or to track the user on a website or across several websites for similar marketing purposes.
  • Manage options
  • Manage services
  • Manage {vendor_count} vendors
  • Read more about these purposes
View preferences
  • {title}
  • {title}
  • {title}
  • Home
  • Fair CHC assessment
  • Problems with CHC
  • CHC outcomes by area
  • Research Review
  • Privacy Policy
  • Cookie Policy (UK)
Search