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Children's Continuing Care Arrangements

To discuss Childrens Continuing Care and whether it might be appropriate for your child or young person please contact your Children’s Community Nurse or ring the team in your area for advice

Continuing Care for Children and Young People

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
  • 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 clinical commissioning group, 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.

Who is eligible?

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 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. 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 for NHS Continuing Healthcare when they turn 18.

How can I access continuing care?

A referral can be made by any health professional or carer who feels a continuing care package may be required. A health assessor 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. See more information here: https://www.nhs.uk/CarersDirect/guide/practicalsupport/Documents/National-framework-for-continuing-care-england.pdf

The assessment will look at the current care being provided but a decision on whether or not 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 or not they have a particular condition.

What happens next?

The health 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 reviewed regularly 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.

Personal Health Budgets

Anyone who is eligible for continuing care, may be eligible for a personal health budget. A personal health budget is provided by the NHS to parents and carers who look after children with complex needs and it allows NHS money to be used flexibly, giving families more control over funding, to better meet their child's health and well-being needs. Families should speak with their continuing care case manager if this is something that they would like more information on.

Useful Documents

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