NHS Children and Young People’s Continuing Care (CCC) is a package of ongoing care for people under 18 whose healthcare needs cannot be met by existing NHS services. Children with NHS CCC will have high level needs as a result of disability, illness or accident. Most children with NHS CCC receive a package of care at home. Some may be in a specialist residential placement.
People under 18 may be eligible for CCC as a result of congenital conditions; long term deteriorating conditions; life-limiting and life-threatening conditions; sudden unexpected need (such as an illness, accident or injury); mental health needs; learning disabilities; autistic spectrum disorder; a need for end-of-life care; or rare/genetic conditions.
NHS England do not publish statistics on NHS CCC but experience suggests that only a few thousand children qualify for CCC each year.
The assessment process includes detailed consideration of the needs of the child across ten different health areas or “domains” such as Breathing, Seizures, and Skin and Tissue Viability. The Children and Young People’s health assessor, who is nominated by the CCG, then makes a recommendation on eligibility and the decision is made by a multi-agency forum or panel.
A child or young person can be referred for CCC assessment through their GP or other health professional, CAMHS, community nursing team, public health team, school nurse, local authority or children’s social care services or through their education setting. A screening ‘checklist’ assessment may be carried out to see if a full assessment for CCC is indicated. Parents and young people who want to seek an assessment should speak first to their GP or treating clinician.
The National Framework on Children’s Continuing Care says that the assessment should be carried out and a decision should be communicated to the child’s family within 6 weeks of referral. Where a child requires fast-track assessment because of the nature of their needs (such as palliative care needs) the assessment process should be completed as quickly as possible and a package of care put in place.
Many children and young people who are eligible for CCC will also be eligible for an Education, Health and Care Plan because they have Special Educational Needs (SEN) that cannot be met within a mainstream school or college through SEN support. The evidence collected for their education, health and care assessment under the Children and Families Act 2014 should be available to the Children and Young People’s health assessor considering eligibility for CCC. Unless there is a good reason, CCC should be part of a wider package of care agreed and delivered by collaboration between education, health and social care services. A child or young person’s health needs related to their SEN, and the health provision in place to meet those needs, should appear in their EHCP.
Families of children and young people with CCC can request a Personal Health Budget from the CCG. The Personal Health Budget can take the form of a Direct Payment, a ‘notional’ budget applied by the CCG in a way agreed with the family, or by transfer to a nominated person who can apply the budget in a way agreed with the family and the CCG.
Children’s Continuing Care is not means tested. Disputes can arise between CCGs and parents/carers regarding the amount of care or level of funding necessary to meet the child’s needs. Our team can assist in resolving these disputes. We have been successful in obtaining substantially increased CCC care packages for children where the provision was inadequate.
An award of CCC is not for life nor even until the child reaches adulthood. The child’s needs will be regularly reviewed – first within three months of the CCC award, and then annually. There may be a review where there has been a significant change in the child or young person’s needs. If the CCG are proposing to remove an award of CCC funding or to reduce the package of care, we can assist in challenging these decisions.
If the CCG decides, on assessment or review, that a child or young person is ineligible for CCC then this can be challenged through the complaints process and the CCG’s local resolution process. Disputes regarding the level of funding and/or amount or type of care required can be addressed through complaints, through the First-Tier Tribunal (SEND) where the child has an EHCP, or through judicial review. We can assist with all of these methods of challenge and will always try to resolve matters through correspondence and negotiation where possible.
A young person receiving CCC may be eligible for adult NHS Continuing Healthcare (CHC) when they reach the age of 18. The criteria for NHS CHC are different to those for CCC. At age 16-17 screening for NHS CHC should take place and if eligible, the transition to NHS CHC should take place at 18. The transition from children’s to adult services can be a confusing and difficult time for disabled young people and their families. We are able to advise and assist in relation to all aspects of the transition to adult care and support services.