CHC Appeal Process and Continuing Healthcare for Dementia in England

Your parent has advanced dementia, needs 24-hour supervision, and the local Clinical Commissioning Group (now Integrated Care Board) has decided they don't qualify for NHS Continuing Healthcare funding. The family is left paying £1,200-£1,800 per week in care home fees while watching the estate drain. This is one of the most common — and most frequently overturned — funding decisions in the English health system.

What NHS Continuing Healthcare Is

CHC is a package of care fully funded by the NHS for individuals who have a "primary health need." It is completely non-means-tested. If your parent qualifies, the NHS pays all care costs — residential, nursing, or at-home — regardless of savings, property, or income. The £23,250 capital threshold that governs local authority means-tested care disappears entirely.

The test is clinical, not financial: does the overall nature, complexity, intensity, and unpredictability of your parent's care needs indicate that their primary need is a health need rather than a social care need?

The Assessment Process: Checklist to Decision Support Tool

CHC eligibility is assessed in two stages:

Stage 1: The CHC Checklist. A preliminary screening tool, often completed during a hospital stay or a community nursing review. It looks at 11 care domains and flags whether the individual's needs cross the threshold for a full assessment. A positive checklist doesn't guarantee eligibility — it triggers the next stage.

Stage 2: The Decision Support Tool (DST). This is the substantive assessment. A multidisciplinary team (MDT) — typically including a nurse assessor, social worker, and other relevant clinicians — evaluates your parent across 12 care domains:

1. Breathing
2. Nutrition (food and drink)
3. Continence
4. Skin integrity
5. Mobility
6. Communication
7. Psychological and emotional needs
8. Cognition
9. Behaviour
10. Drug therapies and medication
11. Altered states of consciousness
12. Other significant needs

Each domain is scored on a spectrum from low to priority. The final eligibility decision is made by the ICB, not the MDT — the team provides the assessment, and the ICB makes the funding decision.

Why Dementia Cases Are Frequently Refused

The CHC framework is designed to assess health needs broadly, but dementia creates a pattern that assessors often underweight. A parent with advanced dementia may score high in cognition and behaviour but low in physical domains like breathing and mobility. Assessors who focus on the number of "severe" or "priority" scores across all 12 domains can conclude that the overall picture doesn't meet the threshold — even when the cognitive and behavioural needs are so intense they require constant one-to-one supervision.

The National Framework for CHC explicitly states that eligibility should not be determined by diagnosis alone, and that a single domain scoring "priority" or multiple domains scoring "severe" can indicate a primary health need. But in practice, assessors vary in how they apply this guidance, and ICBs under budget pressure have incentives to find people ineligible.

Another common issue: the "well-managed needs" argument. If your parent's dementia symptoms are controlled because they're in a good care home with skilled staff, the assessor may score the managed symptoms rather than the underlying need. The correct approach under the National Framework is to assess what would happen if the care were removed — but this requires the assessor to look beyond the surface.

How to Appeal a CHC Decision

If the ICB finds your parent ineligible, you have two formal routes:

Local resolution. Request a review of the decision in writing within six months. The ICB must convene a local resolution meeting where the family can present additional evidence — clinical records, care home daily logs, GP assessments — that the MDT may have overlooked or underweighted. Bring specific examples: "On these dates, my parent required emergency intervention for choking episodes" is more powerful than a general statement about swallowing difficulties.

You have the right to attend this meeting. If your parent has a Health and Welfare LPA, the attorney can participate and advocate formally. Without one, you attend in a personal capacity and the ICB is not obliged to give your views the same weight.

Independent Review Panel (IRP). If local resolution fails, request a referral to the IRP through NHS England. The panel reviews the assessment process, the evidence, and the ICB's decision. The IRP can recommend that the ICB reassess, reconsider specific domain scores, or overturn the decision. While the IRP's recommendations are not technically binding, ICBs follow them in the overwhelming majority of cases.

What to Do During the Appeal

Care fees don't stop while you appeal. If your parent is in a care home, the bills keep coming. During this period:

• The local authority assesses any means-tested care contribution under the Care Act framework; capital below £23,250 does not by itself mean the council pays all fees
• If your parent is a self-funder, you continue paying from their estate
• If the appeal succeeds, the NHS reimburses care costs back to the date of the original assessment — this can represent tens of thousands of pounds

Keep every invoice. Document every care intervention. Care home daily records and clinical notes are evidence for your appeal.

Retrospective Claims

If your parent paid for care during a past period that was never assessed for CHC, the family may request a retrospective review under the NHS process for previously unassessed periods. The current guidance covers periods from 1 April 2012 onwards. If the review finds that your parent was eligible for all or part of that period, the NHS may reimburse the care costs that should have been covered.

NHS-Funded Nursing Care: The Partial Alternative

If your parent doesn't qualify for full CHC but needs nursing care in a care home, they may qualify for NHS-funded Nursing Care (FNC). This is a flat-rate contribution paid directly to the care home by the NHS:

FNC rate from 1 April 2026: £267.68 per week.

FNC doesn't cover the full care home fee — it covers only the nursing component. The remainder is still means-tested under the Care Act 2014. But it can reduce a family's out-of-pocket costs meaningfully, and the assessment process is simpler than full CHC.

The England Lasting Power of Attorney & Deputyship Kit includes a CHC preparation workbook with domain-by-domain guidance for gathering evidence before the DST assessment, template letters for requesting local resolution and IRP referral, and a needs log designed to capture the day-to-day complexity of dementia care in terms the assessment framework actually weights.

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