Continuing care for children and young people

Some children and young people have very complex health needs. These needs may be so complex that care from a GP, hospital, community team, or specialist service alone is not enough. They may need a package of support called Children and Young People’s Continuing Care which is available up to their eighteenth birthday.

A child or young person may need continuing care because of:

• a condition they were born with
• a disability
• a long-term or life‑limiting condition
• a serious illness or injury

If your child is assessed for continuing care, health, education, and social care services may all be involved. If your child is found to have continuing care needs, these services may work together to provide their care package.

If you think your child may need this support, speak to their health or social care worker.

Who arranges continuing care?

The ICB has a Children and Young People’s Continuing Care team. This team includes specialist nurses, such as children’s nurses, supported by administrative staff.

The team:

• assesses children and young people to see if they are eligible
• arranges a package of care if they are eligible

Referrals and assessments

How to Get a Referral

A health or social care professional can refer your child to the ICB Continuing Care team. They will involve you and your child or young person in the process and will ask for your consent.

The assessment process

There is a two-stage assessment process to find out if a child or young person is eligible for NHS Continuing Healthcare:

1. Initial assessment. A nurse uses a national checklist to see if a full assessment is needed.
2. Full assessment. This is carried out with your local council’s children’s services. It brings together information about your child’s health, care and educational needs. 

The team uses national guidance to decide if your child is eligible. You and your child will be involved and kept informed throughout.

Urgent cases

If a decision is needed quickly, the assessment can be fast‑tracked. Find out more about Fast Track.

If your child is not eligible

If your child does not meet the criteria, you will be directed to other services that may help.

Your child’s care package

If your child is eligible, the Continuing Care nurse will work with local authority children’s services to agree a care package that meets your child’s needs. You and your child will be part of these discussions.

The care package may be funded jointly by the NHS and the local authority.

We will also agree with you the best way of providing the care. For example, this could be delivered by a care agency, or you could have a Personal Health Budget so that you can arrange this yourself.

Moving to adult services

When your child turns 18, their care will be reviewed by the adult NHS Continuing Healthcare team. The children’s team will support this transition and will complete an initial screening for the adult service.

More information

You can find more details about continuing care for children and young people, including how assessments and decisions are made, on the GOV.UK website.