Children's continuing care

Some children and young people (up to age 18), may have very complex health needs. These may be the result of:

  • Congenital conditions.
  • Disability.
  • Long-term or life-limiting conditions.
  • Serious illness or injury.

Children's continuing care is an additional package of care to support parents or carers to meet their child's health needs because they cannot be met by existing services (mainstream and specialist) alone.

The clinical commissioning, which is responsible for arranging for health services locally, has responsibility for assessing children and young people to see if they need a package of continuing care.

A referral can be made by any health professional or carer who feels a continuing care package may be required. When a child or young person is referred for an assessment, NHS Kernow might first check if they are likely to need a full assessment.

Any child or young person up to their 18th birthday who has a complex health need may be eligible. When a young person reaches 18, the adult NHS continuing healthcare arrangements apply.

There are significant differences between children and young people’s and adults continuing care. 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. The CCG will assess any young person in receipt of continuing care when they are aged 16-17, to see if they are likely to be eligible when they turn 18.

NHS Kernow has agreed that the package will be to support parents or carers to manage their child's care at home. Read our children's continuing care. 

Children's continuing care is in place as the Department of Health recognised that some families or carers need additional help for their child and issued national guidance. The guidance is not mandatory and NHS Kernow is developing a policy based on this guidance. 

Our policy (coming soon) reflects national guidance in the use of a "decision support tool" which is a set of domains or areas, within which there are several levels. A panel, consisting of clinical and managerial professionals, will consider the assessment alongside these domains and decide if additional care is needed. If so the panel will also agree the level of additional care needed in terms of hours per week. In order to ensure consistency of approach this is determined by a nationally recognised tool that calculates this level.

Commissioners will also keep the package of care under regular review to ensure the developing child or young person’s needs continue to be supported. A child or young person’s eligibility may change as their needs change.

Continuing care for children can now be requested as a personal health budget.

Role of the children’s complex care and continuing care manager

The children's continuing care manager's role in NHS Kernow is to ensure the smooth running of the panel; liaise with health, social work and education colleagues to offer advice of whether an assessment may be needed; and to advise how the process works.

Role of the children’s nurse assessor 

The children’s nurse assessor role is to liaise with family and carers to undertake an assessment. With consent from the family, they will also contact other colleagues to collect information to support the assessment. The nurse assessor will have knowledge and experience of children with complex needs.

Further information 

National framework for children and young people’s continuing care
The national framework for children and young people's continuing care is for guidance only as follows for local variation in commissioning arrangements.

In order to help you with some common questions, a frequently asked questions resource is currently being developed and will be available shortly. 

Contact information

E-mail: KCCG.childrenspanel@nhs.net
Telephone: 01726 627800