Your mother needs full-time nursing care. You know this. But the assessment panel speaks a different language — and the gap between what you see every day and what they write in their report can cost your family thousands of pounds a year.
NHS Continuing Healthcare (CHC) funds the full cost of care in a nursing home when an individual has a primary health need. No means test. No contribution from you. The value runs to £50,000–80,000 per year. Yet many families who go through the assessment process are turned down — not because their relative doesn't have serious needs, but because the evidence at the meeting didn't match what the multidisciplinary team needed to hear.
This guide explains exactly how to prepare. What records to gather, how to describe needs in the language assessors use, a worked evidence pack across three DST domains, and the five mistakes that consistently weaken otherwise strong cases. (If you are not yet sure whether your relative qualifies, start with our care home funding eligibility guide.) If you do one thing before an assessment, let it be this: prepare your evidence properly.
CHC is not based on diagnosis. It's based on the nature, intensity, complexity, and unpredictability of care needs across 12 domains scored on the Decision Support Tool.
Four domains can score Priority (the highest level) — Breathing, Behaviour, Drug therapies, and Altered states of consciousness. A single Priority rating usually indicates eligibility on its own.
Strong evidence is specific. Replace "she gets confused" with "requires 24-hour supervision due to cognitive impairment — has attempted to leave the building on 4 documented occasions in the past 3 months."
Eight records to request (all free): GP Summary Care Record, memory clinic letters, care home daily notes, MAR charts, OT/physio assessments, hospital discharge summaries, ambulance call records, falls log.
If refused, you can appeal. Local Resolution within 6 months, then an Independent Review Panel — both free. See our CHC appeal guide.
Jump to: Why evidence matters · 12 DST domains · Language bridge · Worked evidence pack · Records to request · Strong vs weak evidence · Five common mistakes · The meeting · What happens next
Last updated: May 2026.
Why Evidence Matters More Than Diagnosis
The assessment is about function, not diagnosis. The National Framework for NHS Continuing Healthcare defines a "primary health need" using four characteristics the panel must consider:
- Nature — the type of care required (clinical vs social)
- Intensity — how much care is needed, and how often
- Complexity — whether needs interact, making care harder to manage or predict
- Unpredictability — whether needs fluctuate in ways that require constant readiness
A person with moderate dementia who lives independently with reminders will not qualify. The same diagnosis with 24-hour supervision needs — exit-seeking, medication refusal, aggression during personal care — very likely will. The difference is not the condition, it is the evidence you present about what that condition means in daily life.
The 12 DST Domains: What Assessors Actually Look For
The Decision Support Tool (DST) is the 36-page form used by the multidisciplinary team to score needs across 12 domains. Each domain is rated from No Needs through to Priority (the highest level). Understanding what each domain measures — and what assessors commonly miss — gives you a clear framework for organising your evidence.
| Domain | What assessors look for | Common family mistake |
|---|---|---|
| Breathing | Ventilation needs, oxygen dependency, suctioning, sleep apnoea requiring intervention | Not mentioning night-time breathing difficulties or equipment used |
| Nutrition (food and drink) | Swallowing risk, PEG feeding, weight loss, supervision at meals, modified textures | Saying "she doesn't eat much" instead of documenting weight loss and supervision needs |
| Continence | Frequency of incontinence, catheter care, skin integrity, dignity and distress | Downplaying incontinence because it feels private or embarrassing |
| Skin integrity | Pressure ulcers (grade and history), wound care, repositioning schedules | Not requesting tissue viability records from care home or hospital |
| Mobility | Falls history, transfers requiring two carers, specialist equipment, fracture risk | Saying "he sometimes falls" instead of documenting frequency and consequences |
| Communication | Ability to express needs, understand instructions, use of communication aids | Assuming staff "just know" what's needed — assessors need documented evidence |
| Psychological and emotional needs | Anxiety, depression, emotional distress, impact on engagement with care | Treating emotional needs as secondary — they carry real weight in the DST |
| Cognition | Memory, orientation, decision-making capacity, safety awareness | Describing "confusion" without explaining the safety and supervision implications |
| Behaviour | Aggression, resistance to care, exit-seeking, self-harm, verbal disruption | Minimising behaviour because it feels disloyal to describe — assessors need the full picture |
| Drug therapies and medication | Complex regimes, covert medication, refusal, specialist monitoring, side effects | Not mentioning medication refusal or the staff time required to administer |
| Altered states of consciousness | Seizures, diabetic episodes, transient ischaemic attacks, blackouts | Forgetting to mention infrequent but serious episodes |
| Other significant care needs | Anything not covered above — sensory loss, pain management, tracheostomy care | Leaving this blank — it is an opportunity to add context that strengthens your case |
Four domains can reach Priority level: Breathing, Behaviour, Drug therapies, and Altered states of consciousness. A Priority rating in any single domain should, on its own, indicate eligibility for CHC. If your relative has severe needs in any of these four areas, make sure the evidence is watertight.
The Language Bridge: Translating Family Experience into DST Language
This is the most valuable section of this guide. Families describe what they see. Assessors need to hear it in clinical language that maps to DST scoring criteria. The meaning is the same — but the phrasing determines the score.
| What families say | How to describe it for the assessment |
|---|---|
| "She gets confused" | Requires 24-hour supervision due to cognitive impairment affecting safety awareness — unable to reliably identify danger, operate appliances safely, or find her way within the building without guidance |
| "He sometimes falls" | Documented fall history of [X] incidents in [Y] months, including [number] requiring hospital attendance — requires two-person transfers and constant supervision when mobilising |
| "She needs help with the toilet" | Requires full continence care including pad changes [X] times daily, assistance with personal hygiene, and skin monitoring due to incontinence-associated dermatitis |
| "He can be difficult" | Presents with resistive behaviours during personal care, requiring trained staff intervention — has refused medication on [X] occasions in the past month, necessitating alternative administration strategies |
| "She doesn't eat much" | Requires staff supervision and active encouragement at every meal to maintain adequate nutrition — has lost [X]kg in [Y] months and is on a modified texture diet due to swallowing difficulties |
| "He wanders at night" | Exhibits exit-seeking behaviour due to disorientation, requiring constant one-to-one supervision during night hours — has been found attempting to leave the building on [X] documented occasions |
| "She gets upset easily" | Experiences episodes of acute emotional distress [X] times per week, requiring staff de-escalation — episodes last [duration] and affect her willingness to engage with personal care |
| "He doesn't always take his tablets" | Refuses oral medication on approximately [X]% of occasions, requiring covert administration authorised under a best-interests decision — complex drug regime of [number] medications administered [X] times daily |
The pattern: Replace vague descriptions with frequency, severity, and consequence. Every time you describe a need, ask yourself: How often? How bad? What happens if no one intervenes?
Worked Example: Dorothy's Evidence Pack
Dorothy is 84, lives in a nursing home, has vascular dementia with frequent agitation, urinary incontinence, and a history of falls. Her daughter is preparing for a CHC assessment. Here is what she wrote for three domains.
Cognition domain:
Dorothy requires 24-hour supervision due to cognitive impairment. She is unable to reliably identify danger (has attempted to leave the building on 4 documented occasions in the past 3 months), cannot operate appliances safely, and does not recognise her room without staff guidance. She is unable to retain information for more than 2-3 minutes, which means instructions about safety must be repeated continuously. Her cognitive function deteriorates significantly after 4pm (sundowning), requiring one-to-one supervision during evening hours.
Supporting evidence attached: care home daily notes (3 months), GP letter confirming vascular dementia diagnosis, memory clinic assessment (August 2025).
Continence domain:
Dorothy requires full continence care including pad changes 6 times per day and once overnight. She is unable to recognise the need to use the toilet and becomes distressed during pad changes, requiring trained staff de-escalation. She has developed incontinence-associated dermatitis on two occasions in the past 6 months, requiring treatment by the tissue viability nurse.
Supporting evidence attached: MAR charts showing continence care frequency, tissue viability nurse assessment letter.
Behaviour domain:
Dorothy presents with resistive behaviours during personal care on approximately 60% of occasions. She has struck out at staff 3 times in the past month during washing and dressing. She requires a minimum of two staff for personal care to ensure safety. She also exhibits verbal distress (shouting, repeated calling out) for periods of 30-90 minutes, typically in the late afternoon, requiring staff de-escalation and one-to-one attention.
Supporting evidence attached: ABC (Antecedent-Behaviour-Consequence) charts from care home, incident reports.
Worked Scenario: The Difference Preparation Makes
Same patient, two outcomes — driven entirely by evidence translation. Arthur, 82, advanced Parkinson's, frequent falls, swallowing difficulty, anxious during personal care.
| Unprepared family | Prepared family (backed by logs + GP notes) |
|---|---|
| "Dad falls a lot and hates being washed. He coughs when he drinks." | "Unpredictable motor fluctuations (freezing) — 6 falls in 14 days, two-person hoist transfers required (Mobility). Severe resistive behaviour during personal care daily, trained-staff de-escalation needed (Behaviour). Dysphagia, choking on thin fluids daily, level-4 puréed diet, 1:1 mealtime supervision to prevent aspiration (Nutrition)." |
| Panel: Mobility Moderate, Behaviour Low, Nutrition Moderate | Panel: Mobility Severe, Behaviour Severe, Nutrition High |
| CHC refused — Arthur self-funds £1,400/week | CHC approved — NHS pays £1,400/week in full |
Strong Evidence vs Weak Evidence: Side by Side
The same underlying need can produce wildly different DST scores depending on how it is documented. The pattern is consistent: weak evidence is general, undated, and emotion-led; strong evidence is specific, dated, sourced, and tied to clinical consequence.
| Need | Weak evidence (often No / Low / Moderate) | Strong evidence (often High / Severe / Priority) |
|---|---|---|
| Falls | "He falls quite often." | "8 documented falls in the last 90 days, recorded in the care home falls log. 3 required out-of-hours GP attendance; 1 required A&E. Now requires two-person stand-aid transfers and 1:1 supervision when mobilising. Source: care home falls log, GP correspondence, ambulance call records." |
| Cognition | "She gets very confused, especially in the evenings." | "Diagnosed vascular dementia (memory clinic letter, August 2025). Disorientation worsens reliably from 16:00 (sundowning) — daily notes record exit-seeking on 4 occasions in the last 3 months. Cannot retain safety information for more than 2–3 minutes. Requires 1:1 supervision after 16:00. Source: memory clinic letter, 90 days of care home daily notes." |
| Behaviour | "He can be a bit aggressive at bath time." | "Resistive behaviour during personal care on approximately 60% of occasions over the past 30 days (ABC charts). Has physically struck staff 3 times in 4 weeks; minimum two-person care now mandated by the care home's risk assessment. Verbal distress episodes of 30–90 minutes daily in late afternoon. Source: ABC charts, care plan risk assessment, incident reports." |
| Nutrition | "She doesn't eat much these days." | "Dysphagia confirmed by SaLT assessment (Sep 2025). Level 4 puréed diet, level 2 thickened fluids. Requires 1:1 supervision and prompting for every meal to prevent aspiration. Weight loss of 4.2 kg in 6 months despite intervention. Source: SaLT report, dietician letter, MUST score trend in care plan." |
| Medication | "He doesn't always take his tablets." | "12 medications administered 4 times daily. Refuses oral medication on approximately 35% of occasions (MAR chart trend, last 60 days). Covert administration authorised under a Mental Capacity Act best-interests decision (October 2025). Requires GP review every 28 days for the antipsychotic. Source: MAR charts, MCA assessment letter, GP medication review notes." |
The three traits of strong evidence are:
- Quantified — exact numbers, frequencies, dates. "8 falls in 90 days" beats "falls often."
- Sourced — name the document the panel can read (MAR chart, ABC chart, GP letter, SaLT report). The panel can verify and weight it.
- Consequence-tied — what happens, or would happen, without intervention. "Required A&E", "two-person care now mandated", "covert administration authorised" — these phrases tell the panel a clinical decision has already been made about severity.
Weak evidence is not dishonest. It is simply how families naturally talk about their relative. The job before the assessment is to translate that natural language into the panel's language, with the documents to back each claim.
What Records to Request Before the Assessment
You have the legal right to request all of the following under UK GDPR Article 15 (Subject Access Request). Responses are required within 30 calendar days, and every item on this list is free of charge.
- [ ] GP Summary Care Record — Write to your GP surgery requesting this under data protection law. They must respond within 30 days. This gives you the full medical history in one document.
- [ ] Memory clinic or consultant letters — Contact the hospital department directly. Ask for copies of all assessment letters, diagnosis letters, and clinic notes.
- [ ] Care home daily notes (last 6 months) — Ask the care home manager in writing. These notes document incidents, behaviour, and care interventions day by day — they are often the strongest evidence you have.
- [ ] Medication administration records (MARs) — Available from the care home. Shows medication refusals, PRN usage, and administration patterns.
- [ ] Physiotherapy or occupational therapy assessments — Contact the relevant department at your local hospital or community health team.
- [ ] Hospital discharge summaries — Available from the hospital's medical records department. Include every admission in the past 12 months.
- [ ] Ambulance call records — If paramedics have attended, these records document what they found on arrival.
- [ ] Falls log — Most care homes maintain one. Request a copy covering the past 12 months.
Start requesting records as soon as you know an assessment is being arranged. Some requests take the full 30 days, and you do not want to walk into an assessment without documentation.
The Funding Action Pack includes ready-to-send records request letters addressed to your GP, care home, and hospital — plus template letters for each stage of the process, so you don't have to draft anything from scratch.
Five Mistakes That Weaken CHC Cases
1. Describing the diagnosis instead of the impact
Saying "she has vascular dementia" tells the panel nothing they don't already know from the medical notes. Saying "her vascular dementia causes her to become severely disoriented after 4pm daily, requiring one-to-one supervision to prevent falls and exit-seeking behaviour" gives them something they can score.
2. Underselling unpredictability
The word "usually" is the enemy of a strong CHC case. "She's usually fine" tells the panel the need is manageable. "Her condition fluctuates unpredictably — she can be calm and oriented in the morning and severely agitated by afternoon, with no reliable pattern" demonstrates the unpredictability that scores highly on the DST.
3. Not documenting night-time needs
Many families focus on daytime care because that's what they see. But night-time needs — wandering, continence care, repositioning, medication — carry significant weight. Ask the care home for their night observation records and include them in your evidence pack.
4. Rating all domains at the same level
If you describe every domain as "moderate," the overall picture looks stable and manageable. Be honest about which needs are severe and which are lower. A case with two or three domains at Severe or Priority is far stronger than one where everything sits at Moderate.
5. Focusing on what they can do, not what they safely do
"He can walk to the dining room" sounds like independence. "He can walk to the dining room but has fallen three times doing so in the past month and now requires staff to walk alongside him" tells the real story. Always describe the risk, not just the activity.
Preparing for the Assessment Meeting
The multidisciplinary team (MDT) meeting is where the DST is completed. This is your opportunity to ensure the evidence is heard. Go in prepared.
- [ ] Bring a written summary — Do not rely on memory or verbal descriptions alone. A printed document organised by the 12 domains is far more effective.
- [ ] Describe worst days, not average days — The assessment must capture the full range of needs, including peaks. If the worst days require hospital attendance or one-to-one care, say so clearly.
- [ ] You have the right to be present — Families are entitled to attend and contribute. If anyone suggests otherwise, this is incorrect.
- [ ] Ask for a copy of the completed DST — You are entitled to see how each domain was scored. Request this at the meeting.
- [ ] If you disagree with a score, say so at the meeting — It is much harder to challenge a score after the meeting than during it. If you believe a domain has been underscored, explain why with reference to your evidence.
- [ ] Take someone with you — A second pair of ears helps. They can take notes while you speak.
- [ ] Record the meeting if possible — You can ask permission to make an audio recording. If refused, take detailed written notes.
What Happens Next
If the assessment finds your relative eligible for CHC, the NHS will fund the full cost of their care placement. There is no means test and no contribution required from the family.
If the assessment finds your relative is not eligible, you have the right to challenge the decision. The first step is Local Resolution with the Integrated Care Board (ICB) — you have 6 months from the decision date to request it. If that does not change the outcome, you can escalate to NHS England for an Independent Review Panel, and beyond that to the Parliamentary and Health Service Ombudsman. Every stage is free. The Ombudsman has published guidance confirming that continuing healthcare is one of the most common funding-decision complaints they investigate. For a full guide to the appeal process, read How to Appeal an NHS Continuing Healthcare Decision.
Either way, you will be in a far stronger position having prepared your evidence properly. The same documentation is valuable for negotiating care home fees, applying for other funding routes, or supporting a future reassessment if your relative's needs change.
A Critical Edge if CHC is Refused: If CHC is denied and you must self-fund, do not blindly accept the home's private rate. RightCareHome provides data from the Market Sustainability and Improvement Fund (MSIF)—the exact rates councils pay care homes. Since your relative has been officially assessed as having primarily "social" needs, the care home cannot reasonably claim they require a massive "complex medical" premium. You can use the MSIF rate to negotiate a fair base fee.
This is a lot to manage alongside caring for someone you love. If you would rather have this done for you — personalised evidence checklists mapped to each of the 12 domains, ready-to-send request letters, and a week-by-week preparation plan — that is exactly what the Funding Action Pack was built for.
Get Your Custom Funding Action Plan
Read next:
- Does Dementia Qualify for NHS Continuing Healthcare? — diagnosis-specific deep dive into how dementia maps to the DST
- How to Appeal an NHS Continuing Healthcare Decision — what to do if the panel finds your relative ineligible
- What Happens When Care Home Savings Run Out? — the council safety net at £23,250 and how to plan the transition
- Care Home Top-Up Fees Explained — if CHC is refused and council funding kicks in, this is the gap families face
This guide provides general information about the NHS Continuing Healthcare process and is not legal, medical, or financial advice. For guidance specific to your situation, contact your local NHS Continuing Healthcare team or speak to a specialist care funding adviser. Figures quoted are for the 2026/27 financial year and may change.
Sources
The information in this guide is based on the following publicly available frameworks and legislation. We recommend reading these if you want to understand the rules in full detail.
- NHS Continuing Healthcare National Framework (October 2022) — The official policy governing CHC assessments, including the Decision Support Tool and all 12 domains. Published by the Department of Health and Social Care. Available at gov.uk/government/publications/national-framework-for-nhs-continuing-healthcare-and-nhs-funded-nursing-care.
- NHS CHC Decision Support Tool — The 36-page assessment form used by multi-disciplinary teams. Describes each domain and its scoring levels. Available at gov.uk/government/publications/nhs-continuing-healthcare-decision-support-tool.
- UK General Data Protection Regulation (UK GDPR), Article 15 — Your legal right to request copies of personal data (Subject Access Request), including medical records. Response required within 30 calendar days. Guidance at ico.org.uk.
- Care Act 2014 — Governs Local Authority responsibilities for care needs assessments and financial assessments. Available at legislation.gov.uk/ukpga/2014/23.