Some children and young people (up to age 18), may have very complex health needs.

These may be the result of:

• congenital conditions (something that happens before or at birth)
• long-term or life-limiting conditions
• disability
• serious illness or injury.

Children with such complex needs may need additional health support to that which is routinely available from GP practices, hospitals, or in the community.

This additional package of care is called ‘Continuing Care’. The Integrated Care Board (ICB), which is responsible for arranging health services locally, has the responsibility for assessing children and young people to see if they need a package of continuing care.

Who is eligible?

Any child or young person up to their 18th birthday with a complex health need may be eligible.

When a young person reaches 18, the adult NHS Continuing Healthcare arrangements apply.

Significant differences exist between children and young people’s Continuing Care, and NHS Continuing Healthcare for Adults.

Although a child or young person may receive a package of continuing care, they may not be eligible for NHS Continuing Healthcare.

The ICB will assess any young person receiving continuing care when they are 16 - 17 to see if they are likely eligible for NHS Continuing Healthcare when they turn 18.

How can you access continuing care?

There is a Children and Young People’s Continuing Care pre-assessment checklist which can be used to determine the appropriateness of referral for Continuing Care assessment. 

The Nursing Manager for All Age Continuing Care (AACC) from the ICB can be contacted to offer support advice and support around this.

A referral can be made by any health / social care professional or carer who feels a continuing care package may be required.

The Nursing Manager for AACC will then collect evidence of the child’s needs, drawing on the advice of health and care professionals. A National Framework provides guidance and a set of categories of needs to support decisions on whether or not a child has a continuing care need.

Please take a look at the Continuing Care National Framework (external link).

The assessment also looks at the preferences of the child or young person, and their family.

The assessment will look at the current care being provided.

The assessment is needs led and any decision made is based on the assessment of those needs, rather than the care available or type of condition. 

Who decides what happens next?

The Nursing Manager AACC reviews the assessment results and will make a case to a panel of experts, who decide if the child or young person has a continuing care need.

A decision is usually made within 6 weeks from referral.

Depending on the decision, a package of care is then agreed upon; some of this care may be provided through existing services, and some may need to be specially arranged.

The ICB will keep the care package under regular review to ensure the child or young person’s needs continue to be supported.

The first review is three months after the care is put in place and annually after that unless there is a significant change in need. Where a child or young person has SEND, the continuing care package review, and the regular review of an EHC plan, should be synchronised to gain one holistic assessment.

A child or young person’s eligibility for continuing care may change as their needs change.