Children and Young People’s Continuing Care

Children and young people up until their 18th birthday with complex health needs may be eligible for ongoing support called NHS Children and Young People’s Continuing Care (CYPCC or ‘Children’s Continuing Care’). This is different from NHS Continuing Healthcare which is for eligible adults aged 18 years and over.

National Framework for Children and Young People’s Continuing Care.

Children’s Continuing Care funding is required when a child or young person has needs arising from disability, accident or illness that cannot be met by existing universal or specialist health services alone. For instance, their needs are so complex, that they cannot be met by the services which are routinely available from GP practices, hospitals or NHS community services.

It is offered to children and young people who meet the Children’s Continuing Care criteria following a full assessment of their health needs.

Making a referral

If you think your child should be assessed for Children’s Continuing Care, talk to a health or social care professional who works with them, and if they think they are likely to be eligible, they will refer them to our team.

You or your child will be asked if you or they consent to a referral to our team and for the assessment process to commence. This will include the sharing of information with involved health, care, education and other relevant third parties for the purposes of the assessment.

If you require any further information about consent processes or for any advice or discussion with referral processes, please contact the Children’s Continuing Care Team via:

sxicb.sussexchildrenscontinuingcare@nhs.net

Please note, we can only accept referrals from a professional known to the team.

How is a child or young person assessed for funding?

Their needs will be assessed against the nationally agreed criteria as detailed in the National Framework for Children and Young People’s Continuing Care (2016).

As part of the assessment, a health assessor working on behalf of NHS Surrey and Sussex will be allocated, and they will collate relevant information about your child’s health and care needs. The child (where appropriate) and their parent(s)/guardian(s) play a central role in contributing to the assessment, as well as any other person(s) or organisation(s) you and/or your child feel should be consulted.

It is likely that a range of organisations and multidisciplinary professionals will contribute, such as health, education and children’s social care services.

Information gathered may include verbal or written feedback and historic and/or current documentation, such as assessments, reports, letters, and risk assessments.

We may also ask families and/or care providers to complete diaries to record their child’s care needs over a certain amount of time, for example over a 24 or 48 hour period.

Eligibility and review

How is the eligibility decision made?

The health assessor will use the information gathered during the assessment process to complete a document called a Decision Support Tool (DST).

NHS Surrey and Sussex CYPCC Panel will determine whether your child is eligible for Children’s Continuing Care following a review of the DST, the recommendation, and any other accompanying information.

Once completed, the panel eligibility outcome will be communicated to you within five working days of the date of the decision.

If found eligible, the health assessor will work with you your child and any other involved parties to develop a personalised care package to meet the health needs of the child.

How are needs and eligibility reviewed?

Your child’s Continuing Care needs will be reviewed over time once the package of care has commenced. There will be an initial three month review following a commencement of a package of care and then either a routine annual review, or a review before 12 months if there is a change in their health needs.

If there is a significant change, a full reassessment may be necessary and the eligibility decision for Children’s Continuing Care could change.

What happens when my child turns 18?

This framework covers young people up to their 18th birthday. Thereafter, the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care is used.

There are significant differences between NHS 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 Children’s Continuing Care, they may not be eligible for NHS Continuing Healthcare or NHS-funded Nursing Care once they turn 18. Our team will support you and your child through the transition process, which will commence prior to their 18th birthday.