Who is CHC for?

If your child has a disability or life-limiting condition and needs lots of health and medical care, they might be eligible for NHS Continuing Healthcare (CHC). This is NHS funding to pay for the care your child needs.

You do not pay anything for CHC, and it does not affect benefits.

A need that is related to a condition or impairment can either be a:

• social care need
• health need

CHC is for children whose main care needs are health-related. Social care only covers general support, but CHC covers medical or health needs.

What is a Primary Health Need?

Your child may qualify if their medical needs are:

• Complex or severe
• Involve several healthcare professionals
• Unpredictable or not fully managed
• Likely to get worse without support

This may include children who need:

• Breathing support or a ventilator
• Feeding tubes
• Continence care
• IV medication
• Support for emotional or mental health needs

How to Apply

If you think your child might benefit from NHS Continuing Healthcare (CHC), you can ask for an assessment.

You can request this through:

• Your child’s social worker

• A healthcare professional

• Your local Integrated Care Board (ICB)

The assessment usually has two steps:

1. Eligibility checklist – A professional looks at your child’s health needs to see if a full assessment is needed.

2. Full assessment (Decision Support Tool or DST) – A detailed review of your child’s care needs.

Most children will go through the checklist first, which helps decide if they should have the full assessment.

You can use this Word template to request an assessment for CHC provded by Access Social Care.

Some children can go straight to the full assessment if their needs are urgent.

CHC Checklist for Children

A health professional or social worker will complete the CHC checklist to see if your child may need a full continuing healthcare assessment. The checklist looks at different areas of your child’s health and care needs, including:

• Breathing: Using oxygen, a nebuliser, or a tracheostomy.

• Eating and drinking: Needing help to eat or drink, or being unable to take food or drink by mouth.

• Toileting and continence: Needing a stoma, catheter, or other support.

• Skin and tissue care: Risk of pressure sores or other skin problems.

• Moving around: Difficulty walking, needing help to move safely, or involuntary muscle spasms.

• Communication: Needing help to express themselves, being non-verbal, or struggling to let others know what they need.

• Emotional and mental health: Anxiety or stress that makes daily care difficult.

• Understanding and decision-making: Difficulty making choices about everyday care or activities.

• Behaviour: Actions that could put your child or others at risk.

• Medication support: Needing reminders or help to take medicines safely.

• Pain management: Experiencing high levels of pain that require a nurse’s help with medication.

• Seizures or alertness: Frequent seizures or changes in consciousness needing specialist care.

This checklist helps professionals understand the full picture of your child’s health needs and whether they qualify for full CHC support.

The health professional will look at each area and score your needs as A, B or C:

• A: significant medical need
• B: moderate medical need
• C: mild or no medical need

After the checklist is completed, your child’s scores will determine the next steps.

Positive checklist

Your child will have a positive checklist if they meet one of these:

• 2 or more A scores

• 5 or more B scores

• 1 A score and 4 B scores

• 1 A score if it is a priority need

Priority needs include:

• Breathing support

• Behaviour that could put your child or others at risk

• Needing help with medication (drug therapy)

• Frequent seizures or changes in consciousness

If your child has a positive checklist, they are eligible for a full assessment. You will receive a letter explaining the next steps and how to book the full assessment.

Negative checklist

If your child has a negative checklist, they are not eligible for continuing healthcare at this time, and a full assessment will not be arranged.

If your child’s health changes or gets worse, you can request another checklist after 3 months.

Fast-Track Assessments

If your child’s condition is getting worse quickly or is terminal, they may qualify for a fast-track assessment to get support faster.

To see if your child qualifies, speak with your social worker or a healthcare professional. There are helpful resources available, including:

• Fast-track pathway guidance from the NHS

• Letter templates to request a fast-track CHC assessment

At Little Miracles, we encourage you to reach out for support — we can guide you through the process and help make sure your child gets the care they need without delay.

A full assessment: Decision Support Tool

After an initial assessment by a healthcare professional, your NHS local integrated care board (ICB) will do an assessment.

Find your local integrated care board (NHS)

This is called the full assessment for continuing healthcare. The full assessment:

• has at least 2 healthcare professionals
• can include your social worker
• looks at the same health needs as the checklist
• takes much longer to complete and can have multiple assessments
• can look at other evidence about your health needs
• might include speaking to health professionals who understand your health needs

Getting the Information You and Your Child Need

The full CHC assessment should be accessible and supportive for you and your child. It can take place in person, over the phone, or online, and may take a few hours to cover everything.

If you have evidence of your child’s health needs, bring it with you or email it to your local ICB beforehand. This might include:

• Care plans

• Treatment plans

• Letters from specialists

• Hospital admissions

• Discharge reports

Making the assessment easier for you and your child

If there’s anything that would help make the assessment more comfortable, speak up — your assessor can usually accommodate. For example, you can ask for:

• Rest breaks during the assessment

• Several shorter sessions instead of one long meeting

• The assessment to take place at home, via video call, or somewhere your child feels comfortable

• All questions written down or shared in advance

• A copy of the decision support tool beforehand so you know what to expect

• Someone to speak on your behalf

We understand that talking about your child’s health can be stressful or upsetting — you are not alone. The national framework for CHC says the process should be person-centred and accessible, and you should be fully involved in every step.

If your child has communication needs, these must be met throughout the assessment. Afterward, the ICB may speak with healthcare professionals who manage your child’s care and may look at health records (with your permission). Sometimes, a second assessment is needed, and you will always be informed if this is the case.

Getting help from an independent advocate

Independent advocates are trained professionals or volunteers. They work with you to get your voice heard and stand up for your rights.  

An advocate can: 

• listen to you and your concerns 
• give you information about your options to help you make choices 
• help you express what you want 
• go to meetings to support you to say what you want 
• support you to advocate for yourself

Advocates usually act as an expert adviser and not as a representative. They do not usually speak on you or your child's behalf unless you ask them to. But they will help you prepare what you want to say.

You can also ask a family member or friend to be your advocate if you trust them to do what is best for you.

For more information on how to get help from an advocate, complete the Family Support Referral Form here or at the bottom of the page.

Personal Health Budgets

If your child gets CHC, you may get a personal health budget. This lets you have more control over care, for things like:

• A personal assistant (PA)
• Specialist equipment
• Respite care
• Activities or therapies that meet medical needs

Reviews usually happen 3 months after CHC starts and then every year, or sooner if your child’s needs change.

What If You Disagree?

If your child is not eligible or you disagree with the care plan, you can:

• Ask for a review
• Request a fast-track assessment if needs worsen
• Ask your ICB for help to appeal decisions

Remember, you don’t have to navigate this journey alone. The Little Miracles Family Support Team is here to guide and support you every step of the way. If you have questions, need advice, or just want someone to talk to about your child’s needs, please don’t hesitate to reach out. You can get in touch anytime by completing the form below — we’re here for you.