Complex health needs
Some children and young people (up to age 18), may have very complex health needs.
These may be the result of:
- Congenital conditions
- Long-term or life-limiting conditions
- 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.
Any child or young person up to their 18th birthday who has a complex health need may be eligible.
There are significant differences between children and young people’s continuing care and NHS Continuing Healthcare for adults. Although a child or young person may be in receipt of a package of continuing care, they may not be eligible for NHS Continuing Healthcare.
You can find out more about the children's and young people continuing care framework on the Government website.
Any young person in receipt of continuing care will be assessed when they are aged 16-17, to see if they are likely to be eligible for NHS Continuing Healthcare when they turn 18. This is part of transition planning.
A referral can be made by any health professional or carer who feels a continuing care package may be required. Continuing care requests need to be supported by clinical reports and recommendations from professionals involved with your child. However, your GP should be able to help you with this.
When a child or young person is referred for an assessment, the assessor might first check if they are likely to need a full assessment.
The Continuing Care Commissioning Specialist Nurse and the Nurse Assessors are responsible for the assessment to whether a child or young person has continuing care needs in line with the Children and Young People’s Continuing Care National Framework.
The national framework provides guidance, and a set of categories of needs to support decisions on whether a child has a continuing care need.
An important part of the assessment is to capture the preferences of the child or young person and their family.
The assessment will look at the current care being provided but a decision on whether a child or young person has a continuing care need is based on the nature of their needs, rather that the care available, or whether they have a particular condition.
The Continuing Care Commissioning Specialist Nurse and the Nurse Assessor will make a case to a panel of experts, who decide based on the evidence, and the recommendation, if the child or young person has a continuing care need.
A decision is usually made 6-8 weeks from referral. Depending on the decision, a package of care is then agreed; some of this care may be provided through existing services; some may need to be specially arranged. The package of care will be kept under regular review to ensure the developing child or young person’s needs continue to be supported. A child or young person’s eligibility for continuing care may change as their needs change.