The Truth About Navigating CHC Funding: What Families Need to Know Before They Apply

When families reach the point of considering NHS Continuing Healthcare (CHC), it's usually because the situation at home has become overwhelming. Someone's needs have increased, care is taking a toll, and the costs are starting to feel impossible. CHC is supposed to help with exactly that — but anyone who has gone through the process knows it isn't simple, quick, or predictable.

This article cuts through the noise. No false promises. No sugar-coating. Just the truth about what CHC really is, how it works, and what families need to prepare for before they apply.

What CHC Actually Is (And What It Is Not)

NHS Continuing Healthcare is full funding provided by the NHS for people whose primary needs are health-related, not social-care related. That distinction matters more than anything else.

If the person needs support mainly because they:

• struggle with washing, dressing, cooking, mobility
• need companionship or supervision
• require general help at home

…that usually falls under social care, which is means-tested.

But if the person's needs are primarily:

• medical
• complex
• unpredictable
• intense
• require ongoing clinical oversight

…then CHC may apply.

The Biggest Misconception: "If someone is really unwell, they will automatically get CHC."

They won't. Many people with very serious conditions are refused. Why? Because the bar is high and the process is rigid.

Families often go through the process expecting compassion and common sense. Instead, they're given checklists, scoring tables, and jargon. It feels cold — and yes, it is frustrating. But understanding how the system works gives you a better chance of success.

Step 1: The Checklist — Your First Gatekeeper

The first stage is the CHC Checklist. This is a basic screening tool used to decide whether someone should move to the full assessment.

It looks at needs under different categories such as:

• cognition
• behaviour
• mobility
• nutrition
• continence
• medication
• consciousness
• psychological needs

To move to the next stage, you generally need a certain number of "A" or "B" scores. If the professional completing the checklist barely knows the person, the scores will almost always be too low.

Do not let anyone rush this assessment. Take your time. Give real examples. Explain the worst days, not the best ones.

Step 2: The Full MDT Assessment — Where It Gets Serious

If the Checklist passes, you move to a Multi-Disciplinary Team assessment (MDT). This is where the real decision happens.

The MDT includes at least two professionals (often a nurse assessor and social worker). They assess the person across 12 care domains, scoring each one from:

• No needs
• Low
• Moderate
• High
• Severe
• Priority

You don't need all high scores. You don't need a severe score in every area.

CHC eligibility is based on the overall picture — the interaction between needs, the level of risk, and the level of skilled care required.

What families often get wrong:

They downplay needs without realising.

For example:

• They mention a fall but not the frequency.
• They say "sometimes confused" instead of "daily confusion causing safety risks."
• They list medications but not the consequences if they are missed.
• They describe incontinence but not the full impact (skin breakdown, infection risk, constant supervision, dignity issues).

Be specific. Be honest. Don't soften the truth.

The Four Key Indicators — The Deciding Factors

The MDT uses four indicators to determine eligibility:

If your loved one's needs meet a high level in any of these areas — or a combination across several — they may be eligible.

But here's the catch: the assessors decide what counts as "high" or "complex." And different assessors interpret the guidance differently.

Common Reasons CHC Applications Are Refused

Understanding why applications fail helps you avoid the same mistakes.

1. The assessment was rushed or incomplete

If the assessor doesn't have a full picture of daily life, they can't score accurately. Make sure they understand:

• What happens on bad days
• The emotional and psychological impact
• The level of supervision required
• What would happen without care

2. Needs were described in general terms

"She needs help with washing" is not enough.

Instead: "She requires full assistance with all personal care due to severe mobility issues and cognitive impairment. Without support, she is at high risk of falls, skin breakdown, and infection. She cannot safely manage hygiene independently."

3. The family didn't challenge low scores

You have the right to question scores during the assessment. If something doesn't sound right, speak up. Ask for clarification. Provide examples that contradict the score.

4. Medical evidence was missing or outdated

The MDT relies heavily on medical records, GP notes, hospital discharge summaries, and specialist reports. If these don't reflect current needs, the assessment will be based on incomplete information.

Before the assessment, gather:

• Recent GP letters
• Hospital discharge summaries
• Specialist reports (neurologist, psychiatrist, etc.)
• Medication lists with reasons for each drug
• Care plans from any current services

What Happens If You're Refused?

If the decision is "not eligible," don't give up. Many successful CHC awards come after an appeal.

Step 1: Request a copy of the Decision Support Tool (DST)

This is the document that shows how each domain was scored and the rationale for the decision. Read it carefully. Look for:

• Scores that seem too low
• Missing information
• Incorrect facts
• Lack of consideration for unpredictability or complexity

Step 2: Ask for a Local Resolution Meeting

This is an informal review where you can present new evidence or challenge the scoring. Bring:

• Updated medical evidence
• A detailed care diary showing daily needs
• Letters from healthcare professionals
• Examples of incidents that demonstrate risk or complexity

Step 3: If that fails, request an Independent Review Panel (IRP)

This is a formal appeal heard by an independent panel. They review the case from scratch and can overturn the original decision.

Many families win at this stage — but it takes time, often 6-12 months.

How to Prepare for a CHC Assessment

Preparation is everything. Here's what you need to do before the assessment:

1. Keep a detailed care diary for at least 2 weeks

Record:

• Every care task performed
• How long each task takes
• Any incidents (falls, confusion, refusal of care, distress)
• Medication times and any issues
• Sleep patterns and night-time needs
• Emotional and behavioural challenges

2. Gather all medical evidence

Contact the GP and request copies of:

• Recent consultation notes
• Hospital discharge letters
• Specialist reports
• Medication reviews

3. Prepare a written summary

Write a clear, factual summary of:

• Current diagnoses
• Daily care needs
• Risks if care is not provided
• How needs have changed over time
• The impact on family carers

4. Involve healthcare professionals

Ask the GP, district nurse, or specialist to provide supporting letters. Their professional opinion carries significant weight.

5. Don't go to the assessment alone

Bring a family member, friend, or advocate. They can:

• Take notes
• Ask questions you might forget
• Challenge scores that seem wrong
• Provide emotional support

What CHC Funding Actually Covers

If you're awarded CHC, the NHS pays for all your care costs. This includes:

• Care at home (personal care, nursing care, support workers)
• Care in a care home (all fees, including accommodation)
• Equipment and adaptations
• Specialist services (physiotherapy, occupational therapy, etc.)

Importantly, CHC is not means-tested. It doesn't matter how much money you have — if you're eligible, the NHS pays.

How Long Does CHC Last?

CHC is reviewed regularly — usually every 3 months initially, then every 6-12 months if needs remain stable.

If needs decrease, funding can be withdrawn. If needs increase, the package can be adjusted.

Some people receive CHC for years. Others receive it for a few months during a period of acute need.

The Emotional Reality of the CHC Process

Let's be honest: the CHC process is exhausting.

You're already caring for someone with complex needs. You're tired, stressed, and worried about money. And then you're asked to navigate a bureaucratic system that feels designed to say no.

It's normal to feel:

• Frustrated by the complexity
• Angry at having to "prove" how unwell someone is
• Guilty about focusing on negatives rather than strengths
• Overwhelmed by paperwork and appointments

These feelings are valid. The system is hard. But you're not alone.

Where to Get Help

You don't have to navigate CHC alone. Support is available:

NHS CHC Team

Your local Integrated Care Board (ICB) has a CHC team. They can explain the process, provide guidance, and answer questions.

Independent Advocacy Services

Many areas have free advocacy services that can support you through the assessment and appeal process. Ask your local council or search online for "CHC advocacy [your area]".

Citizens Advice

They provide free, impartial advice on CHC and can help you understand your rights.

Specialist CHC Advisors

Some organisations specialise in CHC appeals. They charge fees but can significantly improve your chances of success.

Everyday Care Plus

We've supported families through CHC assessments and appeals. We can help you:

• Understand the process
• Prepare evidence
• Attend assessments
• Challenge unfair decisions

The Truth About Timescales

The NHS says CHC assessments should be completed within 28 days of the Checklist. In reality, it often takes much longer.

Delays happen because:

• Assessors are overworked
• Medical evidence takes time to gather
• Appointments are rescheduled
• Decision-making panels meet infrequently

If you're waiting longer than 28 days, chase the CHC team. Ask for updates. Put complaints in writing if necessary.

Backdated Funding: Can You Claim Retrospectively?

Yes. If you're awarded CHC and you've been paying for care that should have been funded, you can claim backdated payments.

This can go back months or even years, potentially recovering thousands of pounds.

To claim:

• Keep all receipts and invoices for care costs
• Document when needs began
• Gather evidence showing you met CHC criteria during that period

The process is complex, but specialist advisors can help.

Final Thoughts: Is CHC Worth Pursuing?

Yes — if you genuinely believe your loved one meets the criteria.

CHC can make an enormous difference to families struggling with care costs. It removes financial pressure and ensures proper, funded care.

But it's not easy. The process is demanding, and success is never guaranteed.

Go in with realistic expectations. Prepare thoroughly. Don't be afraid to challenge decisions. And remember: you're advocating for someone you love. That's worth fighting for.