What is children and young people’s continuing care?

A continuing care package will be required when a child or young person has needs arising from disability, accident or illness that cannot be met by existing universal or specialist services alone.

1. Some children and young people (up to their 18th birthday), may have very complex health needs. These may be the result of congenital conditions, long-term or life-limiting or life-threatening conditions, disability, or the after-effects of serious illness or injury (Annex A provides more information on these types of need).

2. These needs may be so complex, that they cannot be met by the services which are routinely available from GP practices, hospitals or in the community commissioned by clinical commissioning groups (CCGs) or NHS England.1 A package of additional health support may be needed. This additional package of care has come to be known as continuing care.

3. Continuing care is not needed by children or young people whose needs can be met appropriately through existing universal or specialist services through a case management approach.

4. This framework supports CCGs in determining if a child’s needs are such that they require a package of continuing care. It provides advice based on existing practice across the country on undertaking a holistic assessment of the child or young person’s needs. CCGs have autonomy as to how they fulfil this function, and what process they adopt.

5. This framework covers young people up to their 18th birthday. Thereafter, the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care and the supporting guidance and tools should be used.2 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 or NHS-funded Nursing Care once they turn 18. Further information on how to support transition is given below.

Therefore, Continuing Care is a way of funding health care packages for babies, children and young people (from birth to 18 years old) with complex healthcare needs whose needs cannot be met by existing mainstream or specialist health services.  These complex needs may be as a result of disability, accident or illness.

Children and Young People are assessed using the National Framework for Children and Young People’s Continuing Care (DOH 2016).  This framework is designed to support Clinical Commissioning Groups (CCGs) in determining if a child’s needs are such that they can only be met through a package of continuing care.

This Framework is intended to provide guidance for clinical commissioning groups (CCGs) when assessing the needs of children and young people whose complex needs cannot be met by universal or specialist health services.

CCGs have a legal responsibility for securing to a reasonable extent the health care which an individual needs, and this guidance is about the process which should be followed for the equitable discharge of that responsibility for children and young people with complex needs.

The Framework published in March 2010 has supported good practice locally. The principles which underpin it continue to be relevant. Recent changes however have left parts of the Framework out of date. This revision takes account of the new structures of NHS commissioning created by the Health and Social Care Act 2012 and the new integrated approach to the commissioning of services for children and young people with SEND which the Children and Families Act 2014 introduced.

In particular, where a child or young person has a special educational need or disability (SEND), which will often be the case, then CCGs and local authorities should endeavour to coordinate the assessment and agreement of the package of continuing care, as part of the process to develop the child’s Education, Health and Care plan.

The framework also sets out an equitable, transparent and timely process for assessing, deciding and agreeing these bespoke packages of care.

Each care package will be commissioned to meet the individual needs of each child/young person and their family and can involve health education and social care.

Please find access to the National Framework for Children and Young People’s Continuing Care 2016 here.

Availability

Referral is required for this service

Referral Details:

Healthcare professionals wishing to refer a child or young person for continuing care assessment can contact the Children’s Community Nurses on 020 7266 8840, or email at CLCHT.CCNTeam@nhs.net for the referral form.

Other notes

How does the service change between Children’s Services and Adult Services?

Our services cover up to 18 years old.  Adults will need to have their needs assessed using the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care to see if they are eligible. A summary of the Transition process is below:

  • At 14 years of age, the young person should be brought to the attention of adult continuing care services.
  • At 16 years of age, screening for NHS continuing healthcare should be undertaken using the adult screening tool.
  • At 17 years of age, an agreement in principle for adult NHS continuing healthcare should have been made.
  • At 18 years of age, full transition to adult NHS continuing healthcare or to universal and specialist services should have been made.

 

Who to contact

Contact Name

Children’s Community Nurses

Telephone

 020 7266 8840

E-mail

 CLCHT.CCNTeam@nhs.net

 

In addition, to access the Westminster local Offer's booklet about health services for children with special educational needs and disabilities (SEND) please click here.