Children and Young People’s Continuing Care (under 18 years old)
WellChild and Irwin Mitchell have worked in partnership on this article, in which we guide families through the Children's Continuing Care system and outline what help is available for those with significant healthcare needs.
This article has been created by Eleanor Swain, Solicitor at Irwin Mitchell. If you have any queries you can get in touch with Eleanor by email at [email protected] or call 0370 1500 100 Extension: 3569.
WellChild and Irwin Mitchell share a vision to help build stronger communities. We have teamed up to create a legal section for the WellChild Information Hub. This article on Children and Young People’s Continuing Care is part of a series of legal articles aimed at families with children who have complex medical needs.
This article covers what Children and Young People’s Continuing Care is, who is eligible, how the assessment process works and how your continuing care package may be managed.
What is Children and Young People Continuing Care (CCC)?
Children and Young People Continuing Care is healthcare funding for children and young people under 18 years old who need care that goes beyond what can be provided for free in the community.
A lot of healthcare services for children under 18 are free in the community. However, when a child’s needs are too complex to be met by these free services, CHC funding should be provided.
Who Is Eligible?
Children are eligible for CHC funding if all of the following apply:
- Under the age of 18
- Have a primary healthcare need
- Require care above and beyond what can be provided in the community for free
What is a Primary Healthcare Need?
A primary healthcare need means someone needs help with treating, managing, or preventing illnesses, injuries, or disabilities, as well as care and recovery for these health problems.
Once Your Child Turns 18
Once a child turns 18, they are covered under the adult continuing healthcare framework. They will normally need to be reassessed for continuing healthcare. You can find out more by going to article on Adult’s Continuing Healthcare.
Who is Responsible for Children and Young People’s Continuing Care?
The body responsible for children and young people’s continuing care differs depending on which area of the UK you live in. Click on each of the orange boxes to find out who is responsible in your region.
The Integrated Care Boards (ICB) are the bodies which assess and fund continuing healthcare in England.
The University Health Boards (UHB) are the bodies which assess and fund continuing healthcare in Wales.
Continuing Care in Northern Ireland is slightly different to in England and Wales.
The NHS in Scotland has replaced continuing healthcare with a scheme called Hospital Based Complex Clinical Care.
You can view the National Framework for Children and Young People’s Continuing Care by clicking here.
Application Process
Once is it considered that a child may require care that is more complex than what can be provided in the community, they should be assessed to see if a further healthcare package would be required. You should request the Integrated Care Board (ICB)/ University Health Board (UHB) undertake this assessment.
There are two steps to this:
1. Pre-Assessment Checklist
The pre-assessment checklist begins the application process. It is completed to help the ICB/UHB understand:
- The complex needs the child has
- Whether these could be met in the community
If they decide the needs can be met in the community, the child will not be given a further package.
If they decide the needs cannot be met in the community the child will be assessed further.
2. Further Assessment
These further assessments are:
- Family comments and preferences and if at an age where possible, the child’s views
- Holistic assessment of the children’s needs including social and educational needs are also considered.
- Review of multi-disciplinary reports
- Decision support tool (‘DST’)
The children’s DST is the main but not only tool for whether a child is eligible for continuing care funding. It focuses on:
- 10 care domains
- The needs the child has under these domains
- Whether the child has complex, intense or unpredictable healthcare needs
What are the domains?
These domains are breathing, nutrition, mobility, continence, skin, communication, medication, psychological and emotional, seizures and behaviour.
There are specific descriptions related to the 10 domains. It is important to consider a need against these descriptions. You can appeal a level of need awarded under these domains but remember that the description is what the level of need is based on.
Example
For example, to meet the low award in Breathing, your child would have to match the description of:
Routine use of inhalers, nebulisers, etc.;
or
care plan or management plan in place to reduce the risk of aspiration
The process for NHS Continuing Healthcare assessments can be complex. Beacon is an independent organisation that offers free, expert advice on NHS Continuing Healthcare.
You can click here to visit the Beacon website or call their free helpline on 0345 548 0300 for support.
Receiving A Decision
A recommendation on whether your child is eligible for Continuing Healthcare will be made.
Your child is likely to have continuing care needs, if they are assessed as having either:
- A severe or priority level of need in at least one domain of care
- A high level of need in three domains of care
CCC Funding In The Community
What is CCC Funding in the Community?
CCC funding can be provided in the community. If this is the case, the CCC funding will cover the:
- Nurses
- Heath Care Assistant carers required to meet the healthcare needs assessed in the DST
How Many Hours Do You Get?
Once you have been awarded eligibility for CCC funding, the ICB/UHB will consider how many hours of care support the person requires to meet their needs in the community. This should be a person-centred approach and are required to meet the needs of that person.
The CCC teams do sometimes use a computer tool to calculate how many hours should be provided to meet need, but this needs to be considered by the assessor to ensure that they would meet need.
Only the care the CCC team agrees the person requires would be paid for by the CCC team.
What If Enough Hours are Not Awarded
It is a legal requirement for the CCC teams to ensure that they are providing sufficient hours to meet the care needs of a person. If the hours calculated do not meet these needs, a challenge should be made, providing the CCC team with evidence that further hours are required. You can see more about making a challenge for a CCC package in the community here.
Management of Children’s Continuing Care Packages in the Community
These packages can be managed by:
- The CHC team
- The person themselves
- Someone who is known to the assessed
The CHC team will provide a Personal Health Budget which will be a sum of money the CHC team has assessed would be required to meet needs.
This budget can then be managed in three different ways:
- Notional budget: the CCC team commissions the care directly.
- Third Party Budget: an independent company hold the budget and commission the care as per the agreed care plan
- Direct payments: the budget goes to the person or relative and they manage the care, commission the care via an agency or employ carers themselves. However, this budget also needs to cover training, payroll etc.
The direct payments allow a more flexible approach to care, however, comes with its own issues. Click on the yellow boxes to see considerations about rates and top-up.
The major aspect of concern to those with CCC is the increase of private agency rates and the rates being much higher than what the NHS employed staff rates are.
The CCC budget will be based on NHS rates and therefore could be lower than what a private agency is requesting. This needs to be discussed with the CCC team, however, you will need to consider what the local agency rates are and whether you are able to find a care team that will work at NHS rates.
The NHS have a duty to ensure that public funds are spent reasonably, including ensuring that if a cheaper option is available that can still meet the needs of the assessed, they should be using the cheaper option.
However, if there are no agencies at NHS rates that can meet meets, the NHS team should be asked to increase the budget to pay for the agencies that can meet need. You will need to look into other agencies and find out whether they can meet the needs assessed.
If you are using an agency that has increased its rates, you need to tell the CCC team and you should consider whether there are any cheaper agencies that are able to provide this service and whether they should be used instead, otherwise, there is chance the budget will not cover the care costs being paid.
CCC funding is meant to fund your assessed needs and is NHS funding which is a free service. Therefore, the CCC team cannot ask you to top up a healthcare package that the CCC team should be implementing.
For more information and guidance on how Personal Health Budgets work and what may be right for your situation, see the recording of our Personal Health Budgets (PHBs) parent carer session with Ed Kemp.
Appealing Your Decision
If you don’t think the decision you received was correct you can appeal it by contacting the Integrated Care Board (ICB)/ University Health Board (UHB).
The information in this article was correct at the time of publishing but may be subject to change
If you have any comments, ideas, or suggestions about this article don’t hesitate to get in touch with us at [email protected]
Please don’t forget to leave feedback on this article!
Eleanor Swain, Solicitor
Rachel Carluke, Family Information Officer
First published: July 2026
Review due: July 2027
