What is children and young people’s continuing care?
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 and young people’s continuing care is an additional package of care to support parents or carers to meet their child’s health needs because they cannot be met by existing services (universal and specialist) alone. The need for this additional care may because of health needs arising from a disability, accident or illness.
For additional information for children’s continuing care visit Children and young people’s continuing care national framework
It is different from the adult NHS continuing healthcare (CHC) sometimes provided to adults i.e. those over 18 years of age who have very complex health needs. NHS continuing healthcare, also known as fully funded NHS care, is free care outside of hospital that is arranged and funded by the NHS.
For additional information please visit the national continuing healthcare page.
Who is eligible for children and young people’s continuing care?
Eligibility does not depend on a particular disease, condition, or diagnosis.
The ICB will receive an initial checklist assessment from a professional working with the child or young person, which is used to decide if a full assessment is needed? However, if care is needed urgently, for example, palliative care; the assessment may be fast-tracked.
A children’s nurse assessor will arrange to complete an assessment of the child or young person to identify additional needs that are not being met by existing health services.
A multi-agency decision making group made up of paediatrician’s, a GP, paediatric nurses, education and social care representatives will review the assessment of need and decide if your child is eligible for children’s continuing care.
The children’s nurse assessor will explain the process to you in full during the assessment and answer any questions you may have.
What happens if my child’s needs change?
We review all children and young people after 3 months of the initial decision and then at agreed timescales, but as a minimum reviews are carried out annually. We keep the package of care under regular review 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.
What happens if my child doesn’t meet the criteria?
We understand it can be difficult for families to hear that their child does not meet the criteria when you feel like you need support. We will explain to you clearly why your child is not eligible for continuing care and help/signpost you to other support.
If you have a medical need, you will continue to get health support through your GP or the community health team. If you have social needs, you can apply for help from Cornwall Council or the Council of the Isles of Scilly. The Cornwall Care Services directory can direct you to services that could help you more.
Children’s Continuing care appeals
In order to receive funding for NHS children and young people’s continuing care, you will have to be assessed. When the assessment results in a decision that you are not eligible, there is an appeal process.
If you are not happy with the decision, please get in contact with the children’s team within 28 days of receipt of the written decision about your child’s eligibility.
If they are unable to help you with your concerns, we will commence our local resolution process.
Independent review panel
If we have been unable to resolve your appeal, you can apply for a review of our decision by an independent out of county ICB.
Transition
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 or they may receive more support. 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.
From the age of 16, children’s and adults commissioners will work closely together to ensure a smooth transition of a package of care.
Broadcare
Broadcare is our database for children/YPs continuing care, Continuing healthcare and funded nursing care information.
It is a database developed through our experience of working within the continuing healthcare sector.
Through this, we can:
- understand what functions are needed
- how to integrate them together
- consider the issues for IT systems within primary care
With Broadcare, we can capture important patient data in a single place. Then, we can look at trends and create reports measuring our performance.
Freedom of information
The Freedom of Information Act 2000 gives a right of access to all types of recorded information held by public bodies, like the NHS. This includes information held by our continuing healthcare team. Find out more about our freedom of information process.
Before making a request, you may find the information you are looking for in the national benchmarking data.
The act does not give people access to their own personal data, such as their health records. If you want to see information that we hold about you, please make a subject access request.
Contact the team
If you would like to get in contact with the children’s continuing care team you can do so by using the following details.
Children & YPs Continuing Care Team
Part 2S Chy Trevail
Beacon Technology Park
Dunmere Road
Bodmin
PL31 2FR
Children’s continuing care useful links and websites
- Beacon can provide 90 minutes of free impartial advice. After the initial 90 minutes there is a financial charge which they will inform you of. Call 0345 548 0300 or visit their website for free resources and information.
- Children and young people’s continuing care national framework
- Cornwall Care Services Directory
- Healthwatch Cornwall and Healthwatch Isles of Scilly are independent champions for people who use health and social care services. Their job is to make sure that those who run local health and care services understand and act on what really matters to people.
- National framework for NHS funded healthcare
- National guidance on personal health budgets
- social care telephone helplines and forums
Page last reviewed: 29 February 2024