Continuing healthcare for children

Some children and young people have very complex health needs. These may be the result of congenital conditions, long-term or life-limiting or life-threatening conditions, disability. Or they could be the effects of serious illness or injury.

These needs may be so complex that they cannot be met by the NHS services which are routinely available to all patients from GP practices, hospitals or in the community.

Children and young people with complex healthcare needs may be eligible for additional health support, known as Children and Young People’s Continuing Care, until their eighteenth birthday.

From age 18 onwards this ongoing care would need to be provided through Continuing Healthcare or Funded Nursing Care. However, a child or young person who receives Children and Young People’s Continuing Care will not automatically be eligible for Continuing Healthcare for adults.

Who provides Children and Young People’s Continuing Care?

Our Children and Young People Continuing Care team has specialist nurses, including paediatric nurses, supported by administration staff.

The team assesses children and young people to see if they are eligible for Children and Young People’s Continuing Care. If your child is eligible, the team will arrange a package of care to meet your child’s health needs. This can be within the family home, respite outside of the family home or to support access to community activities.

Making a referral for Children and Young People’s Continuing Care

A health or social care professional can make a referral to the Children and Young People Continuing Care team. They will involve you and the child or young person and will ask for your consent.

Once the Children and Young People Continuing Care team receives the referral, the lead nurse will go through an initial checklist-based assessment to decide whether to proceed with a full assessment. This full assessment should be carried out jointly with the county council’s ‘0-25 Together’ service.

How we decide who is eligible for Children and Young People’s Continuing Care

When we receive your referral for Children and Young People’s Continuing Care, we will first complete a ‘checklist’ screening tool. This will help the lead nurse to decide if a full assessment should be completed.

The full assessment follows national guidance and criteria to determine whether the child or young person is eligible for continuing care. The assessment will bring together information about the child or young person’s health, care, and educational needs. The team will consider all these factors when making a recommendation about whether a child or young person is eligible.

You and your family, including the child or young person needing care will be informed and involved throughout the assessment process. If you would like, you can ask a member of your family, a friend, carer or another representative to support you.

In cases where an urgent decision is needed, the assessment process can be ‘fast tracked’ to provide timely continuing care. 

If your assessment does not identify that you are eligible for continuing care, you will be signposted to existing services.

Identifying your package of care

If you are eligible, the lead nurse from the Children and Young People Continuing Care team will work closely with local authority Children’s Services to agree a package of care that meets all their health and care needs as a whole. The package of care will be discussed and agreed with you and your family, or representative. This can be within the family home, respite outside of the family home or to support access to community activities.

This might be a joint package of care using both health and social care that is funded by the NHS integrated care board and county council children’s services.

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

Further information

The GOV.UK website has more information about Children and Young People’s Continuing Care including the assessment and decision-making process and guide for young people and their families.