How to challenge a continuing healthcare refusal
eligible for NHS Continuing Healthcare (often shortened to CHC), the decision can feel both confusing and expensive.
A refusal may mean the difference between full NHS funding and paying care home fees or home care costs through savings, income or local authority means testing.
Challenging a refusal is possible, and many families do succeed where the original assessment was rushed, poorly evidenced or based on an incomplete understanding of the person's needs.
But CHC disputes are rarely won on emotion alone.
The strongest challenges are built on records, chronology, care notes, risk evidence and a clear grasp of the legal test.
This guide explains how to challenge a Continuing Healthcare refusal in England, what evidence matters most, what the review stages look like, and where families often go wrong.
Key point: NHS Continuing Healthcare is a package of care arranged and funded solely by the NHS for adults with a primary health need.
It is not means-tested.
Before going further, one important point on geography: "NHS Continuing Healthcare" is an England-specific system. Scotland, Wales and Northern Ireland have different arrangements for long-term care funding and nursing care.
If your relative lives outside England, the broad idea of challenging a care funding decision may still be relevant, but the rules and appeal routes are different.
What a refusal actually means
A refusal usually happens at one of two stages:
- Checklist stage: the NHS says the person should not go forward to a full assessment.
- Full assessment stage: a multidisciplinary team (MDT) completes a Decision Support Tool (DST), but the Integrated Care Board (ICB) decides the person is not eligible.
The second type of refusal is generally more significant because a full assessment ought to consider the person's needs across a range of care domains, such as behaviour, cognition, mobility, nutrition, continence, skin integrity, breathing and drug therapies.
In practice, many families are left with a short letter saying the person "does not meet the criteria", with little explanation of how that view was reached.
That is not enough for a meaningful challenge.
You are entitled to ask for the evidence behind the decision.
Start with the legal question: does your relative have a primary health need?
The central issue in CHC is not whether your relative is ill, frail, elderly or living with dementia.
It is whether their needs amount to a primary health need.
That idea comes from case law and the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care.
When assessing primary health need, decision-makers should look at four indicators:
- Nature – what the needs are and what sort of interventions are required
- Intensity – how much care is needed, and how often
- Complexity – how different needs interact and make care harder to manage
- Unpredictability – the degree of fluctuation and risk if care is not delivered promptly or properly
This matters because families often focus only on diagnosis: "Mum has advanced dementia, so surely she qualifies." Diagnosis can be relevant, but CHC is about needs, not labels.
Equally, a refusal can be wrong even where there is no dramatic diagnosis, if the person's day-to-day care needs are severe, unstable or clinically demanding.
Important: A person does not need to be at the end of life, bedbound, or in a nursing home to qualify for CHC.
Eligibility can arise in a care home, in supported living or in their own home.
The first thing to do after a refusal
Do not start by writing a general complaint saying the outcome is "unfair".
Instead, gather the paperwork.
Ask the ICB for:
- the completed Checklist, if there was one
- the Decision Support Tool (DST)
- the MDT recommendation
- the formal eligibility decision letter
- assessment notes used in reaching the decision
- care home records, community nursing notes and other documents relied on
If you do not already have authority to act, the NHS may ask for proof that you can represent the person.
This might be a health and welfare or property and financial affairs lasting power of attorney, deputyship, or the person's consent if they still have capacity.
If no formal authority exists, ask how the ICB will deal with representation in the person's best interests.
You should also request a clear explanation of the review process and the time limit for seeking a review.
Different ICBs may phrase this differently in their letters, but it is sensible to act promptly and keep proof of all correspondence.
Pro Tip: Ask for the full underlying records, not just the summary DST.
Many weak refusals look tidy on the form but fall apart when the daily care notes show repeated falls, choking risk, medication refusals, distress, pressure damage or unpredictable behaviour that the summary barely mentions.
How the challenge process usually works in England
The exact wording can vary slightly by area, but the broad route is usually:
| Stage | What happens | What you should do |
|---|---|---|
| Checklist refusal | The NHS decides the person does not trigger a full assessment. | Ask for the completed Checklist and reasons. Challenge factual errors and missing evidence. In some cases, press for a fresh Checklist if needs have changed. |
| Full assessment refusal | The MDT completes a DST and the ICB decides there is no eligibility for CHC. | Request a local review and provide written submissions tied to the evidence and the four indicators. |
| Local resolution | The ICB reconsiders the decision, sometimes through a meeting or review panel. | Submit a structured challenge with care records, examples and corrections to the DST scoring and rationale. |
| Independent Review Panel | If local resolution does not settle matters, NHS England can convene an Independent Review Panel (IRP). | Focus on whether the National Framework was properly applied and whether the decision was consistent with the evidence. |
| Ombudsman | Complaints about maladministration can go to the Parliamentary and Health Service Ombudsman after the NHS process is complete. | Raise procedural unfairness, delay, failure to consider evidence and poor administration. |
A challenge is not always only about overturning the current decision.
In some cases, the issue is whether eligibility should have been awarded months or years earlier.
Retrospective reviews can involve substantial sums if someone wrongly paid for care that should have been NHS-funded.
Where refusals commonly go wrong
Many CHC refusals do not fail because staff are acting in bad faith.
They fail because the assessment process can flatten messy, fluctuating care needs into neat tick-box categories.
Common problems include:
- Understating fluctuation: a person has "good mornings and terrible evenings", but the DST records only the calmer periods.
- Ignoring interaction between needs: for example, severe cognitive impairment plus unsafe mobility plus medication non-compliance plus aggression during personal care.
- Treating managed needs as low needs: because staff work hard to keep someone safe, the records make them appear more stable than they really are.
- Over-reliance on diagnosis or setting: assumptions such as "most dementia care is social care" or "residential home residents rarely qualify".
- Failure to consider risk: falls, aspiration, pressure damage, seizures, diabetic instability, self-neglect or refusal of essential care.
- Weak evidence gathering: limited records, missing district nursing input, or no proper input from relatives who know the pattern of deterioration.
One of the most important CHC principles is that well-managed needs are still needs.
If a person avoids serious incidents only because trained staff intervene repeatedly, that does not make the underlying need disappear.
"The right question is not whether staff are coping.
It is what would happen if that skilled oversight and intervention were not there."
Build your challenge around evidence, not outrage
A strong challenge sets out, domain by domain, where the assessment is wrong and why.
Think like a case builder.
For each disputed point, identify:
- what the DST said
- what the records actually show
- why that matters under nature, intensity, complexity or unpredictability
For example, suppose the DST scores Mobility as "High" because a resident needs two carers and equipment for transfers.
That may sound serious, but on its own it does not secure CHC.
Your written challenge might say that the mobility need becomes more significant because it combines with poor cognition, inability to follow instructions, high falls risk, distress during repositioning, and fragile skin, creating complex and unpredictable risk.
Likewise, if Nutrition is scored as "Moderate" because the person eats with prompting, but the notes show recurrent choking episodes, prolonged supervision, food pocketing and a high risk of aspiration due to dementia progression, you should point that out clearly.
Useful approach: Families often improve their case by creating a simple timeline covering the 3 to 6 months before the assessment, showing hospital admissions, falls, weight loss, infections, pressure sores, behavioural incidents, medication changes and emergency call-outs.
What records are worth collecting?
The most persuasive evidence is usually contemporaneous care documentation rather than retrospective family recollection alone.
Useful records may include:
- daily care notes from the care home or home care agency
- turning charts and pressure area care records
- food and fluid charts
- falls logs and incident reports
- behaviour charts
- GP records
- district nursing notes
- continence assessments
- SALT input where there are swallowing concerns
- hospital discharge summaries
- medication administration records
- records of refusals of care or medicines
If you are supporting someone at home, keep your own log as well.
Record examples such as night-time wandering, unsafe transfers, repeated incontinence episodes, skin breakdown, diabetic episodes, confusion about medicines, or episodes of breathlessness.
A family diary is not as strong as clinical records, but it can help show pattern and frequency.
Pro Tip: If the refusal letter says needs are "routine" or "predictable", test that statement against the records.
Ask yourself: how many times in the last month did staff have to respond urgently, alter the care approach, call a clinician, or manage risk that could not simply be left until later?
How to write the review request
Your review request should be calm, precise and evidence-led.
Avoid turning it into a long account of how stressful the situation has been, even though it probably has been.
The decision-makers need to see why the assessment was flawed.
A practical structure is:
- State the decision being challenged – include the date and whether it was a Checklist or full DST refusal.
- Request a review – say that you believe the person's needs were not properly assessed under the National Framework.
- Summarise the main reasons – for example, missing evidence, under-scoring in specific domains, failure to consider unpredictability.
- Give domain-by-domain points – keep each one tied to records and examples.
- Address the four indicators – nature, intensity, complexity, unpredictability.
- Attach supporting evidence – indexed if possible.
- Request the next step clearly – local resolution meeting, reconsideration, or referral onward if the local stage is exhausted.
Do not assume higher domain scores automatically equal CHC.
The Decision Support Tool provides guidance, but eligibility is not a simple arithmetic exercise.
Equally, do not let the NHS dismiss the matter by saying there were "not enough severe levels".
The overall picture matters.
What to say about the Decision Support Tool
The DST covers care domains and assigns levels such as No Needs, Low, Moderate, High, Severe or Priority.
Families often focus too narrowly on whether one box should be "High" instead of "Moderate".
That can matter, but the bigger question is whether the rationale behind the scoring properly reflects the real burden and character of care.
For instance:
- Behaviour: Was distress, resistance, aggression or disinhibition recorded accurately, or minimised because staff were familiar with the person?
- Cognition: Did the assessment reflect inability to understand risk, make safe choices or cooperate with essential care?
- Psychological and emotional needs: Were persistent anxiety, fear, agitation or trauma responses considered?
- Drug therapies and medication: Was the complexity of administration, monitoring, side effects or refusal captured?
- Altered states of consciousness: If there were seizures, fainting episodes or diabetic hypo events, were frequency and risk addressed properly?
If you think the MDT meeting itself was flawed, set that out.
For example, perhaps a key clinician was absent, the family was not given a proper chance to contribute, or crucial records from a recent hospital admission were missing.
Procedural problems do not automatically win the case, but they can be important.
A practical example
Take an elderly man in a care home with advanced Parkinson's disease and dementia.
The NHS refuses CHC, saying his needs are being met through routine residential and nursing input.
His daughter challenges the decision.
She produces records showing:
- frequent episodes of rigidity and freezing affecting transfers
- inconsistent medication effectiveness, with timing critical to avoid severe deterioration
- recurrent choking and coughing at meals
- rapid distress and resistance to personal care
- two recent hospital attendances following falls
- ongoing pressure area concerns due to immobility and poor repositioning tolerance
Looked at separately, each issue might appear manageable.
Taken together, they point to intense supervision, clinically informed timing, interacting needs and significant risk if care slips.
That is often where refusals become challengeable: not because one single need is dramatic, but because the whole picture is more than the DST summary suggests.
If the person's needs have worsened since the refusal
Sometimes families put all their energy into challenging the old decision when a better route may be a new assessment.
If needs have materially changed since the refusal, ask for a fresh Checklist or reassessment at the same time as pursuing the review, depending on what stage the case is at.
This is especially relevant where there has been:
- a recent hospital admission
- clear deterioration in mobility or cognition
- new pressure sores
- significant weight loss or swallowing problems
- rapidly increasing behavioural distress
- end-of-life decline
If the person is entering a rapidly deteriorating phase and may be approaching the end of life, ask whether the Fast Track pathway is appropriate.
Fast Track is different from the usual DST process and is designed for people with a rapidly deteriorating condition who may be entering a terminal phase.
Checklist: questions to ask before sending your challenge
- Do I have the refusal letter, DST, MDT notes and supporting records?
- Can I identify specific factual mistakes in the assessment?
- Have I linked each disputed point to documentary evidence?
- Have I addressed nature, intensity, complexity and unpredictability?
- Am I showing how needs interact, rather than listing them separately?
- Have I included examples of risk, fluctuation and urgent intervention?
- If needs have worsened, have I also asked about reassessment or Fast Track?
- Have I kept copies of everything sent and proof of delivery?
What happens at local resolution?
Local resolution is the NHS's chance to reconsider the decision before the matter moves to an Independent Review Panel.
Depending on the area, this may involve a meeting, a paper-based review, or a panel.
Ask in advance:
- who will attend
- whether you can submit written comments in advance
- whether you can bring a representative
- what records the reviewers will have
- whether you will receive the outcome in writing with reasons
Go into the meeting with a short written summary.
Do not try to argue every sentence of the DST.
Focus on the issues that make the biggest difference: omitted incidents, underplayed risk, failure to consider the interaction of needs, and any mismatch between the notes and the scoring.
If the NHS accepts that the process was flawed, the remedy may be a new MDT assessment rather than an immediate finding of eligibility.
That can still be a worthwhile outcome if the original assessment was seriously defective.
When to ask for an Independent Review Panel
If local resolution does not resolve matters, you may be able to request an Independent Review Panel (IRP) through NHS England.
The IRP does not simply re-run the case from scratch as if nothing has gone before.
It looks at whether the ICB properly applied the National Framework and whether the decision was consistent with the evidence.
At this stage, your argument should be especially disciplined.
Good points to raise include:
- the MDT or ICB misapplied the primary health need test
- evidence was missing or overlooked
- the rationale for domain levels was unsupported by the records
- the four key indicators were not analysed properly
- the decision focused too much on care setting or diagnosis
- procedural unfairness affected the outcome
An IRP can take time.
Families dealing with current care fees should meanwhile check what funding arrangements are in place, whether the local authority has completed a financial assessment if relevant, and whether any interim arrangements need reviewing.
Can you complain to the Ombudsman?
Yes, but usually only after the NHS complaints and review route has been exhausted.
The Parliamentary and Health Service Ombudsman can look at maladministration and service failure.
This is not the same as saying "I disagree with the clinical judgment".
The Ombudsman is more likely to engage where there has been delay, poor record handling, failure to follow procedure, inadequate explanation or other administrative fault.
In some cases, if local authority charging or social care process issues are mixed in with the dispute, the Local Government and Social Care Ombudsman may also be relevant.
CHC and local authority funding often overlap awkwardly in real life, especially where families are moved from one system to the other without clear explanation.
Should you get professional help?
Some families manage the review themselves successfully, particularly where they are organised and comfortable reading records.
Others decide to use a solicitor, specialist adviser or advocate.
There is no single right answer.
You may want professional help if:
- the case is retrospective and involves large fees already paid
- the records are extensive and difficult to analyse
- there are disputed legal or procedural issues
- the family cannot manage the process because of time or stress
- the case is already heading to IRP
If you do seek help, be cautious.
Ask what exactly the adviser will do, what experience they have with CHC in England, how fees work, and whether they will provide a written assessment of the strengths and weaknesses of your case rather than simply promising success.
Common mistakes families make
Even strong cases can be weakened by avoidable errors.
The most common are:
- missing deadlines or failing to chase acknowledgement
- relying only on diagnosis rather than care needs
- sending emotional but unfocused submissions
- not obtaining the underlying care records
- arguing score labels without addressing the four indicators
- overlooking deterioration and failing to ask for a new assessment
Another frequent problem is assuming that because the person has dementia, the care must automatically be classed as "social care".
That is far too simplistic.
Dementia-related needs can plainly cross into CHC territory where they create intense supervision, high risk, resistance to essential care, swallowing problems, behavioural disturbance, or other complex and unpredictable demands.
The financial side while you are challenging
A CHC challenge does not usually stop care fees from being charged in the meantime.
If your relative is in a care home and the NHS says they are not eligible, the person may have to pay privately or undergo local authority means testing, depending on their finances and circumstances.
This is why families should keep all invoices, contracts and payment records.
If a CHC refusal is later overturned retrospectively, those documents may matter when reimbursement is calculated.
If the person is moving between hospital, short-term placement and longer-term care, check who is funding each phase.
Temporary NHS-funded aftercare, intermediate care, section 117 aftercare in mental health cases, NHS-funded Nursing Care, and local authority charging are all different things.
A refusal of CHC does not settle those other questions automatically.
Final thoughts
Challenging a Continuing Healthcare refusal is rarely quick, but it is often worth doing where the decision does not match the reality of the person's needs.
The most effective challenges are grounded in the records, tightly linked to the National Framework, and clear about why the evidence points to a primary health need.
If you remember one thing, make it this: the issue is not whether your relative needs a lot of help.
It is whether the overall quality, quantity, complexity and risk in their care are beyond what a local authority can lawfully be expected to provide.
That is the line you need to evidence.
Ask for the papers, build a timeline, compare the assessment against the daily records, and challenge the weak points methodically.
A refusal is not necessarily the end of the matter.