Continuing care (age 0 to 17)

Overview

Some children and young people (up to their 18th birthday) may have highly complex health needs. These may result from congenital conditions, long-term or life-limiting illnesses, disabilities, or the lasting effects of serious injury or illness. In such cases, they may require an additional package of health support known as Children and Young People’s Continuing Care (CYPCC). 

Sometimes these needs are so complex that they cannot be fully met by standard services provided by GP practices, hospitals, or community teams commissioned by the Black Country Integrated Care Board (ICB) or NHS England. 

Support 

All assessments are carried out based on individual needs and involve members of a multi-disciplinary team who support the child or young person. The team also assists with hospital discharge planning, assessments, and the coordination and organisation of care packages. 

Accessing the service 

Referrals to the Continuing Care Nurse are usually made by the child or young person’s key professional, for example, their School Nurse, Community Nurse, or Social Worker. The assessment process should normally be completed within six weeks of receiving the referral, although this may vary depending on the complexity of the case. If the child or young person meets the referral criteria, their parents or carers will be contacted to arrange a Children and Young People’s Continuing Care assessment. A thorough and fair assessment of health and care needs will then be undertaken. The outcome determines whether the individual meets the eligibility criteria for continuing care funding, following the Children’s Continuing Care Framework set out by the Department of Health. If the criteria are met, the family will be informed of the decision, and the Continuing Care Nurse or Coordinator will work with them to develop a suitable package of care tailored to their specific needs. 

Working with the education, health and care (EHC) plans 

The Education, Health and Care Plan (EHCP) process provides a coordinated assessment of a child or young person’s needs, drawing on input from multiple professionals and focusing on the outcomes that matter most to the child and their family. 

Where possible, the Children and Young People’s Continuing Care process is aligned with the EHCP process. This joint approach ensures that outcomes are clearly identified across education, health, and social care, and that the child or young person’s views, aspirations, and interests are central to the plan. Collaborative working helps promote best practice and consistency of support. 

Once the care package is in place, it is reviewed after three months, and then annually. Additional reviews are arranged if the child or young person’s needs change significantly before the scheduled review. 

Transition to adult continuing healthcare (18+) 

If a young person currently receives continuing care and is likely to need similar support as an adult, this should first be discussed with parents or carers around the age of 14. When the young person reaches 16-17 years of age, they should be referred to the Adult NHS Continuing Healthcare Team for an assessment. This multi-disciplinary assessment determines eligibility, with a final decision ideally made before the young person turns 18. 

Funding for continuing care

Funding for a care package may be provided entirely by health services, or in some cases, may include contributions from social care or education depending on panel decisions.