Continuing Healthcare: Evidence and Experience

Behind every CHC decision is a person. Every experience deserves to be heard.

My mother’s experience of dementia and NHS Continuing Healthcare (CHC) led me to examine how assessment, review and appeal processes affect families.

This website brings together our family’s journey, research evidence and practical explanations of the CHC system in England. It explores what a fair assessment should consider and the consequences that decisions, delays and challenges can have for people receiving care and those supporting them.

Personal names have been removed from the family account. Personal experience, published evidence and my interpretation are clearly distinguished, with sources and limitations explained throughout. This is an independent information resource, not legal advice or an NHS service.

Our family’s CHC journey

My mother has advanced mixed dementia and lives in a nursing home. She depends on others for eating, personal care, repositioning and transfers. She struggles to communicate her needs, so those caring for her must recognise changes and respond on her behalf.

Before she entered residential care, I cared for her at home for approximately four and a half years. Her CHC journey began in 2020 and has since involved repeated assessments, disputed decisions and lengthy appeals.

Key events

Why I am sharing this

Behind these dates is a person living with advanced dementia and a family trying to secure recognition of her needs.

The process has required repeated preparation, correspondence, scrutiny of records and paid advocacy, alongside watching my mother become increasingly dependent. A successful appeal did not bring lasting certainty: another disputed decision followed, and a further assessment took place while that appeal remained unresolved.

This experience prompted me to examine what other families report and what the wider evidence tells us about CHC.

The September 2026 decision remains disputed. My concerns about its assessment and decision-making process have been submitted for investigation and have not yet been independently determined.

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The impact on families

In our family’s experience, the demands of CHC have extended far beyond attending an assessment. They have included gathering records, checking paperwork, preparing submissions and repeatedly pursuing answers while my mother’s condition has deteriorated.

Time and uncertainty

Each assessment or appeal requires preparation. When meetings are postponed, that work is accompanied by further waiting and rearranged work commitments. I arranged annual leave for hearings that subsequently did not take place.

The unresolved appeal against an earlier decision has also run alongside a new assessment of my mother’s current needs. Keeping track of these separate processes adds to the demands on a family representative.

Financial pressure

Following the loss of CHC funding, my mother’s care costs depleted her savings. Seeking local-authority support introduced another process involving financial records and questions about which council was responsible.

I have also paid for specialist advocacy to help challenge the decisions. This has added a personal cost to the time spent pursuing the case.

Emotional strain

There is a particular strain in watching someone become more dependent while repeatedly having to explain and evidence their needs. Delays and unanswered questions prolong the uncertainty.

Time spent reviewing documents and pursuing correspondence is also time that could otherwise be spent simply being with my mother.

Why this matters

This is one family’s account, and other families may have different experiences. It nevertheless raises an important question: how accessible is the CHC process to people who have less time, confidence, support or money to pursue a challenge?

That question helped shape my literature review into CHC decisions and experiences.

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The hidden cost of unpaid care

Care provided willingly should not become care assumed indefinitely.

When care is provided by a partner, relative or friend, its cost can disappear from the accounts of public services. The work still takes place. Someone provides practical support, monitors changes, coordinates appointments and makes time for assessments and appeals.

This is a wider issue than one family’s experience. Research by Carers UK and the University of Sheffield estimated the annual replacement value of unpaid care across the UK at £184.3 billion, using 2021/22 census data. This is an economic valuation of care provided—not money paid to carers, an estimate of CHC-related costs or a calculation of government savings. Read Valuing Carers 2021/22.

When families become the people holding everything together

Relatives, partners and friends may gradually take on responsibility for care, service coordination, financial arrangements and pursuing decisions. They do so because someone they care about needs help.

That willingness should not be treated as evidence of unlimited time, capacity or resources. A responsibility undertaken out of love or necessity can become an ongoing expectation, even when it affects employment, rest, relationships and financial security.

The recognition and support of unpaid carers is a separate issue from individual NHS Continuing Healthcare eligibility. Nevertheless, the two can intersect: assessment preparation, disputed decisions and repeated correspondence can add further responsibilities to an already demanding caring role.

Unpaid care does not determine CHC eligibility

A family’s willingness or ability to provide care does not establish that the person receiving it has no Primary Health Need.

Eligibility must be assessed through the person’s needs, including their nature, intensity, complexity and unpredictability. The National Framework also recognises that successfully managed needs remain needs: effective support should not obscure the underlying need or the care required to manage it. Read the National Framework.

The presence of unpaid care does not itself establish eligibility either. The essential point is that the person’s needs require proper assessment, regardless of who currently provides support.

What might a similar caring journey involve?

Consider someone providing care at home for four and a half years, followed by continuing involvement in residential care and CHC assessments or appeals.

The following illustration values only the home-care stage. It assumes an average of two to four active care hours daily across that period. These are selected scenarios, not measured averages for carers or verified records of an individual’s care.

The calculation uses the Homecare Association’s 2026/27 minimum homecare service-price benchmark of £34.42 per hour. This includes provider costs and overheads; it is not the amount a family carer would earn. All hours are valued at that single benchmark, rather than historical prices. The calculation uses 365 days per year. Read the Homecare Association’s research and reports.

Actual dates, absences, shared responsibilities and care supplied by paid carers or public services would change the figures. The illustration does not establish a payment entitlement or suggest that every hour would otherwise have been publicly funded.

The work beyond practical care

The figures above exclude:

• Liaison with care providers and professionals.
• Care-related travel and administration.
• Reviewing records and preparing for CHC assessments.
• Appeals, complaints and following up unanswered correspondence.
• Interrupted sleep, reduced personal time and disruption to work.

Some of this work is part of supporting someone over time. Additional work caused by avoidable delays, errors or repeated preparation should be identified separately rather than assuming that every administrative task represents a service failure.

Money spent on advocacy, transport, supplies or other care-related expenses should also be recorded separately from the estimated value of unpaid time. Any lost earnings require evidence, and the same hours should not be counted both as a time valuation and an additional earnings loss.

What recognition should mean

Not every carer follows this journey. Some provide fewer hours, others substantially more, and responsibilities may be shared. No single illustration captures every experience.

In my view, the issue is the gap between acknowledging carers’ contribution and recognising the responsibilities they carry in practice. Care should not become invisible simply because a family member or friend provides it without payment.

Meaningful recognition would include asking what support carers are willing and able to provide, acknowledging its limits, and considering the effect of assessment and appeal processes on their lives.

Unpaid care has value. Carers have limits. Neither should disappear from the discussion because no invoice is issued.

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What the literature reveals

My review examines CHC decisions and experiences across the whole journey: finding information, assessment, arranging care, reassessment and challenging decisions.

It covers adults in England, with dementia retained as a distinct area of interest. My family’s experience explains why I undertook the work; it is presented separately from the research evidence.

Bringing different evidence together

The review combines numerical findings with accounts of people’s experiences. It draws on research studies, surveys, interviews, administrative data and documented investigations. This approach helps examine both what decisions are recorded and what the process means for people needing care and their families.

What the evidence suggests

An eligibility decision is only one part of the experience. People also need understandable information, opportunities to participate and timely arrangements for appropriate care.

The evidence includes supportive practice as well as difficulties. Clear explanations, knowledgeable professionals and coordinated support can help families navigate the process.

Other accounts and investigations describe problems with communication, waiting, care arrangements and securing a remedy. These findings warrant attention, but they do not establish how frequently every problem occurs nationally.

What national research adds

Nuffield Trust’s Falling through the gaps? (2024) describes limited awareness of CHC and difficulties with understanding and delays. Its All or nothing? report (2025) brings together administrative data and qualitative evidence to examine variation in access, spending and practice. Family accounts describe effects continuing beyond an assessment, within a wider struggle to secure timely care. Nuffield Trust, 2024; Nuffield Trust, 2025.

Age UK’s Continuing to care? (2024) combines published CHC statistics with selected accounts from its survey and advice service. These accounts add evidence about the experience of older people and families; they are not a representative survey of CHC users or an independent eligibility audit. Age UK, 2024.

Review limitations

The updated review contains 42 core source entries and two supporting documentary entries, with three linked companion publications. These are not independent-study totals: some publications share evidence or draw on the same datasets.

The sources differ in their populations, methods and measures, so their findings cannot be pooled into a national decision-error rate. Geographical differences alone also cannot establish that individual decisions were incorrect.

The review was undertaken by one human reviewer with AI assistance, rather than independent duplicate review.

Direct accounts from people with dementia and studies following individuals from decision through to care remain important gaps in the assembled evidence.

Based on the review updated 10 October 2026. Full methods, references and reporting limitations are available on the Research Review page.

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Does where you live matter?

My review compares recorded CHC eligibility outcomes in England, Cheshire and Merseyside, and Warrington. These figures show differences that deserve explanation.

The table shows the percentage of completed Standard CHC assessments that resulted in eligibility in three selected quarters.

In April–June 2026, approximately 9 in every 100 completed assessments in Warrington resulted in eligibility, compared with approximately 18 in every 100 nationally. These figures concern Standard CHC assessments. They are not Fast Track outcomes or the percentage of all residents receiving funding.

What do the differences mean?

The figures describe recorded outcomes. They do not establish whether people with equivalent needs received different decisions.

Differences may reflect the needs of those assessed, referral patterns, evidence gathering or local assessment practice. Smaller local numbers can also produce greater fluctuations. England, Cheshire and Merseyside and Warrington are overlapping populations, rather than independent comparison groups. The three quarters are selected snapshots, not a complete trend.

Can differences in local need explain the variation?

Nuffield Trust’s 2025 analysis found associations between CHC eligibility rates and local characteristics, including deprivation and the proportion of people aged 75 and over. However, the characteristics examined did not fully explain the variation. This supports investigating how access and practice differ. It does not establish that all remaining variation is caused by incorrect decisions: unmeasured differences may also contribute. Nuffield Trust, 2025.

Current official CHC releases include eligibility, referral completion, timeliness and requests for local review. These are complementary measures with different denominators. A percentage of completed assessments resulting in eligibility should not be compared directly with a percentage of screenings resulting in eligibility or a population rate of funded recipients. NHS England, Q1 2026/27 publication.

Why examine variation?

National investigations and mixed methods research have also identified geographical variation and differences in how CHC operates locally (National Audit Office, 2017; Hutchings et al., 2025).

Taken together, the numerical and experiential evidence supports closer examination of access and decision-making. It does not explain the outcome of any individual case.

For families, the question remains straightforward: how is consistent application of the national criteria demonstrated across different areas?

Source: NHS England quarterly CHC data for Q4 2023/24, Q4 2025/26 and Q1 2026/27, as extracted in the review manuscript updated 6 October 2026. These rounded percentages are presented descriptively.

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Funding and spending

CHC decisions have financial consequences for public services and families. Understanding the spending figures requires care: CHC, NHS-funded Nursing Care and means-tested social care are different forms of support.

Spending can rise while the number receiving funding falls, for example if care packages become more expensive. A spending increase alone does not demonstrate improved access.

Rising spending does not necessarily mean wider access

Nuffield Trust reported a 17.1% real-terms increase in net CHC expenditure between 2017/18 and 2022/23, alongside a declining number assessed as eligible. This spending analysis excluded personal health budgets. Estimated expenditure per eligible Standard CHC recipient increased from £44,894 to £65,185, both expressed in 2022/23 prices. These are historical expenditure estimates, not current care tariffs or amounts paid directly to individuals. Nuffield Trust, 2025, printed pages 32–34.

Financial pressures

The National Audit Office’s 2017 investigation reported planned savings of £855 million on CHC and NHS-funded Nursing Care by 2020/21, measured against projected expenditure growth. This was not an equivalent cut from existing spending (National Audit Office, 2017).

More recent research examines resource pressures and tensions at the boundary between NHS and local-authority responsibilities. These findings provide context, but they do not establish that a particular person was refused funding because of a savings target (Hutchings et al., 2025; Gainsbury et al., 2026).

A separate Nuffield Trust review of Staffordshire and Stoke-on-Trent’s 2025/26 savings plans raised concerns about potential cost-shifting to councils and unmet need. It concluded that a substantial component of recurrent savings involved redefining the boundary of what was treated as health care. This is evidence about one local system; it cannot establish what happened in another ICB or explain any individual eligibility decision. Gainsbury et al., 2026.

The cost to families

In our case, the loss of CHC funding meant care fees depleted my mother’s savings. Seeking local-authority assistance then required a separate financial assessment, while the CHC appeal remained unresolved.

Paid advocacy created an additional personal expense. The wider evidence also describes financial exposure and uncertainty, although it does not support a reliable national estimate of families’ total costs.

What should be transparent?

Clear reporting should show what spending covers, whether savings are planned or achieved, and what happens to people’s care when funding arrangements change. The question is how financial decisions affect access, continuity of care and the responsibilities falling to families.

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Complaints and assessment practice

Disagreement with an eligibility decision and a complaint about how the process was conducted are different issues. A family may raise both.

An eligibility challenge asks whether the person’s needs were assessed correctly. A process complaint may concern delays, participation, inaccurate records, communication or the handling of evidence.

What published investigations show

The Parliamentary and Health Service Ombudsman’s Continuing Healthcare: Getting it right first time report documents failures in selected investigated cases, including problems with assessment, care planning and handling challenges (Parliamentary and Health Service Ombudsman, 2020).

These findings establish what went wrong in those cases. They cannot tell us the proportion of all CHC assessments that contain errors.

Evidence of delays and costs falling on families

The National Audit Office’s 2017 investigation found that 24,901 full assessments—approximately one-third—took longer than 28 days in 2015/16. It also identified limited assurance about consistency and variation not fully explained by the factors examined. These are historical findings, not a current national delay rate. National Audit Office, 2017.

The Ombudsman’s 2020 report drew learning from 60 selected cases within 336 CHC complaints decided between April 2018 and July 2020. It identified errors in care planning and reviews of previously unassessed care, with some families unnecessarily paying for care or supplying it themselves. In two cases concerning care-package problems, redress exceeded £250,000 for each family. This was case-specific redress, not an average award. The sample does not establish how frequently these failings occur across CHC. Parliamentary and Health Service Ombudsman, 2020.

These questions concern the reliability and transparency of the process. They do not presume that every disputed decision is wrong.

Concerns in our case

The 2023 Independent Review Panel identified shortcomings concerning evidence of agreement between assessors, discussion of the combined needs and the use of the care setting in eligibility reasoning.

Following the September 2026 assessment, I raised further concerns about conflicting records of professional views, apparent scoring and summary-table inconsistencies, and a reference to a reconvened meeting that participating professionals said they had not been informed of.

I asked for these matters to undergo a quality-assurance review before the assessment record is relied upon in the substantive eligibility challenge.

Accountability and learning

My concern is whether learning from an earlier independent review was carried forward into later assessments. Families should be able to understand what evidence was considered, how disagreements were handled and how identified errors will be corrected.

The 2023 panel findings are documented findings. The concerns about the September 2026 assessment remain disputed matters submitted for investigation. Personal names have been removed.

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What needs to change?

My family’s experience and the evidence reviewed point to practical areas for improvement. These are proposals arising from this work.

Clear information from the start

People need understandable explanations of CHC, the evidence required, possible outcomes and how to challenge a decision. Information should be accessible to those who have no clinical knowledge or specialist support.

Meaningful participation

The person receiving care and their representative should have a clear opportunity to contribute. Families’ knowledge of day-to-day needs should be considered alongside professional evidence, with disagreements recorded transparently.

Accurate records and understandable decisions

Assessment records need to identify the evidence considered and explain how the conclusion was reached. Errors and conflicting accounts should be investigated, with corrections documented clearly.

Timely decisions and care

Progress updates and clear responsibility for unresolved cases would help families navigate delays. Monitoring should follow the journey from referral through to appropriate care, rather than stopping at the eligibility decision.

Accessible challenges and effective remedies

Families need a challenge process they can understand and use. Where shortcomings are identified, the response should explain what will be corrected, who is responsible and when action will follow.

Learning that carries forward

Independent review and complaint findings should lead to demonstrable improvements in later practice. Repeated concerns deserve examination of whether previous recommendations were implemented and sustained.

Better evidence about people’s experiences

Future research should follow people through assessment, funding, care arrangements, review and appeal. It should include positive experiences, unresolved journeys and the voices of people with dementia wherever participation can be supported.

The central question is simple: does the CHC pathway help people obtain appropriate care through a process they can understand, participate in and trust?

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Methods and references

This page brings together a documented family account, a mixed methods integrated review and descriptive comparisons of published CHC data.

How the work was undertaken

The review examines adult CHC in England from 2007 onwards, with dementia retained as a distinct subgroup. It considers access, assessment, funding implementation, review and challenge. Numerical findings and accounts of experience are brought together while preserving their original context. Standard CHC and Fast Track are considered separately.

Research studies, administrative data and documented investigations contribute to the review. Policy documents provide context. My family’s records inform the personal account and the reasons for undertaking the work; they are not counted as a research study.

Transparency and limitations

One human reviewer undertook the work with AI assistance. This did not provide independent duplicate screening or appraisal. The review is complete and used a convergent integrated synthesis to bring together quantitative findings and qualitative accounts. No statistical meta-analysis was performed, and the findings do not establish a national decision-error rate.

The geographical comparisons use selected reporting periods. They describe differences without establishing their causes.

Family evidence

The personal account draws on assessment and panel records, the 2023 independent review report, correspondence, professional accounts and contemporaneous notes. Established findings are distinguished from concerns still under investigation. Personal names and identifying details have been removed from the public narrative.

Key references

• National Audit Office (2017). Investigation into NHS continuing healthcare funding. Corrected January 2018.
• Public Accounts Committee (2018). NHS continuing healthcare funding.
• Parliamentary and Health Service Ombudsman (2020). Continuing Healthcare: Getting it right first time.
• Healthwatch Enfield (2020). Listening to people’s experiences of using NHS continuing healthcare.
• Department of Health and Social Care (2022). National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care. Corrected July 2023.
• Healthwatch Lambeth (2023). Experiences of applying for Continuing Healthcare in Lambeth. Interviews conducted in 2022.
• Age UK (2024). Continuing to care: Older people let down by NHS Continuing Healthcare.
• Nuffield Trust (2024). Falling through the gaps? A closer look at NHS continuing health care.
• Hutchings et al. (2025). All or nothing? Access and variation in NHS continuing health care. Nuffield Trust.
• Gainsbury et al. (2026). Review of Staffordshire and Stoke-on-Trent ICB’s 2025/26 savings plans. Nuffield Trust.
• NHS England. Quarterly CHC and NHS-funded Nursing Care data. Comparisons use Q4 2023/24, Q4 2025/26 and Q1 2026/27.

This is a selected reference list for the webpage. The review manuscript contains the wider bibliography and supporting methods.

Share your NHS Continuing Healthcare experience

Share your NHS Continuing Healthcare experience

This questionnaire is for people aged 18 or older who have experienced NHS Continuing Healthcare (CHC) in England, or supported someone through it. We welcome positive, difficult and unresolved experiences. Please answer about one person’s CHC journey.

Please protect everyone’s privacy. Do not include names, addresses, dates of birth, NHS or case numbers, identifiable care records, or details that could identify individuals.

Participation is voluntary. Your answers will not be published as individual submissions. With your separate permission, anonymised summaries and quotations may appear on the website, in submissions to the Department of Health and Social Care, ministers or senior government representatives, or in evidence supporting a future petition. Completing this questionnaire does not sign a petition.

Providing an email address is optional. If you provide one, it will be used only for the follow-up purposes you select. It will not be published or included in government submissions.

Responses and optional email addresses will be retained for 12 months from submission, then deleted from the website’s form records and working copies or exports. Genuinely anonymous summaries may be retained longer. The form also records technical information, including an IP address and browser details. Please read our Privacy Policy before submitting.

To request withdrawal of your response or permission for contact, email admin@watkin.care. We may be unable to locate a response without enough identifying information. Contributions already combined into genuinely anonymous findings may no longer be separable.

Required questions are marked. You may leave other questions unanswered.

About your experience

1. Are you aged 18 or over, and does your response concern an adult’s CHC experience in England? (required)

Yes No

Thank you for your interest. This questionnaire is limited to people aged 18 or over responding about an adult’s CHC experience in England. You cannot continue with this questionnaire.

2. What is your relationship to the CHC process? (required) Please select I am the person receiving or seeking care Family member or friend Other unpaid carer Professional or paid representative Other

3. Does the person’s care involve dementia? Please select Yes No Not sure Prefer not to say

4. Which area handled the CHC process?Please give the town, council area or commissioning organisation. Do not provide an address.

5. When did the experience you are describing mainly occur? (required) Please select 2026 2024–2025 2022–2023 Before 2022 It spans several periods Not sure

6. Which parts of the process have you experienced? (required)

Select all that apply.

Finding information or obtaining a referral Checklist screening Full assessment / Decision Support Tool Fast Track Arranging care after funding approval Review or reassessment Withdrawal of funding Local resolution NHS England Independent Review Panel Retrospective assessment or reimbursement Complaint Not sure Other

7. What is the current position? (required) Please select CHC funding is in place CHC was refused CHC was withdrawn Awaiting assessment or a decision A challenge or complaint is ongoing Funding was reinstated following a challenge Not sure Other

How the process felt

8. Thinking about the experience you are describing, how much do you agree with these statements?

8a. I received clear information. Please select Strongly disagree Disagree Neither agree nor disagree Agree Strongly agree Not applicable / unsure

8b. I had a meaningful opportunity to contribute. Please select Strongly disagree Disagree Neither agree nor disagree Agree Strongly agree Not applicable / unsure

8c. The person’s needs were accurately reflected in the assessment. Please select Strongly disagree Disagree Neither agree nor disagree Agree Strongly agree Not applicable / unsure

8d. Decisions and their reasons were clearly explained. Please select Strongly disagree Disagree Neither agree nor disagree Agree Strongly agree Not applicable / unsure

8e. I received useful updates while waiting. Please select Strongly disagree Disagree Neither agree nor disagree Agree Strongly agree Not applicable / unsure

8f. I knew how to raise concerns or challenge a decision. Please select Strongly disagree Disagree Neither agree nor disagree Agree Strongly agree Not applicable / unsure

9. Did you experience delays?

Yes No Not sure

10. If there were delays, where did they occur and approximately how long did you wait?

11. Where CHC was awarded, did appropriate care arrangements follow? Please select Yes, fully Partly No Arrangements are still pending Not applicable / unsure

12. What effects did the process have on you or the person receiving care?

Select all that apply.

Reassurance or relief Improved access to care or support Emotional strain Time spent on paperwork and correspondence Disruption to work or other responsibilities Care costs or depletion of savings Costs of advocacy or advice Uncertainty or disruption to care arrangements No noticeable effect Prefer not to say Other

In your own words

Please focus on your experience of the CHC process. Do not include names, exact dates, locations, diagnoses, detailed medical histories or other information that could identify you or another person. Broad descriptions are enough. You may leave these questions unanswered.

13. What worked well?

14. What was difficult, and what difference did it make? Please distinguish what you personally experienced from what others told you.

15. What is the most important improvement you would suggest?

Permission to use your response

16. May your response be included in anonymised summaries? These may appear on this webpage, in submissions to DHSC, ministers or senior government representatives, or in evidence supporting a future petition. (required)

Yes No

17. May anonymised quotations from your response be used for those purposes? (required)

Yes No

18. May I contact you about your response or this project? (required)

Yes, about my response Yes, about my response and future project developments No

19. Your email address (optional)Only provide this if you have agreed to contact. Your email address will not be published or included in government submissions.

Please check that your written answers do not contain identifying information before submitting.

Contact and comments

Contact me privately

If you would like to discuss this work, suggest a source or ask about contributing, please email admin@watkin.care. Please keep your initial message brief and avoid sending identifiable care records or sensitive documents.

Join the discussion

You are welcome to share reflections, ask questions and describe what has helped you navigate CHC. Positive experiences and constructive disagreement are welcome.

Comments are public once approved. You may use a pseudonym or display name. Please avoid including names of people receiving care, individual staff, addresses, case numbers or other identifying details.

Comments will be moderated before publication. Personal attacks, advertising and comments containing identifying information will not be published.

Contributing evidence

If you want your experience considered for the evidence-gathering project, please use the questionnaire https://watkin.care/#share-experience above. Its separate consent choices cover possible use in anonymised summaries, government submissions and work supporting a future petition.

Posting a public comment does not automatically give permission for it to be included in those activities.