Practical support

There are three phases in the continuing care process for children:

• assessment phase
• decision making phase
• arrangement of provision phase

The process will be led by a healthcare professional who is experienced in working with children and young people. This person may be described as the "nominated children and young people’s health assessor". For simplicity, we’ve used the term "assessor" on the rest of this page.

Guidance says that the continuing care process should focus on the child or young person and their family. As a young person moves towards adulthood, there should be more focus on them as an individual within their family.

If a child or young person needs immediate support, for example because they need palliative care or they have a terminal illness, there’s a fast-track process to ensure that their care can be put in place as soon as possible.

The assessment phase looks at the following areas:

• the preferences of the child or young person and their family
• a holistic assessment of the child or young person, including a carer assessment to look at your needs, and the needs of other family members who provide care
• reports and risk assessments including those from other health, social care, and education professionals. This could also include a 24- or 48-hour diary of the child or young person’s care needs kept by family members.

The assessor will pull all of this information together. Next, they will use the children and young people’s decision support tool to help decide if your child has continuing care needs.

The decision support tool looks at 10 areas, called "care domains". These are:

• challenging behaviour
• communication
• mobility
• nutrition, food and drink
• continence and elimination
• skin and tissue viability
• breathing
• drug therapies and medicines
• psychological and emotional needs
• seizures

For each of these, there are five possible levels of need:

• priority
• severe
• high
• medium
• low

The assessor will decide which level of need applies to each care domain, taking into account the age of your child and the care they would be expected to need if they weren’t ill or disabled.

If your child is found to have three high ratings, one severe rating, or one priority rating, it’s likely that they’ll be eligible for NHS continuing care. 

At the end of the assessment phase, the assessor will make a recommendation about whether your child has a continuing care need, and if so, the care package that would be required to meet their need.

This phase usually involves a panel or forum made up of professionals with different areas of expertise, such as health, education and children’s services.

The panel will consider the assessor’s recommendations, and make a decision about whether your child is eligible for NHS continuing care, and if so, what their care package should be.

You and your child should be told the panel’s decision within five working days. You should also be given information about how the decision was reached.

See Disputes, below, for details of what to do if you disagree with the decision.

This is the next phase that happens if it’s been decided that your child is eligible for NHS continuing care. Your PCT, your local authority and any other organisations involved will work together to put your child’s care package into place.

The care package should be set up as soon as possible after a decision has been made and you and your child have been told. You and your child should be given a care plan that sets out clearly how it will work.

Government guidance about NHS continuing care for children and young people recognises that you and other members of your family are likely to provide most of the care for your child, and that you should get support with this as part of their care package.

Support for you as a parent carer could include training to help you carry out your caring role. The guidance also states that families should get support to make sure that their quality of life is maintained.

The care package should be reviewed after three months and then at least every year to make sure it’s meeting the child or young person’s needs. Reviews will also confirm whether or not the child or young person still has continuing care needs.

If you, or your child, disagree with any aspect of the continuing care process, you can use the local NHS complaints procedure.

Your Primary Care Trust (PCT) should refer any disputes about assessments to a senior panel and/or a continuing care team in another area so that the original decision can be reviewed.

If there’s a dispute between your PCT and your local authority, or between two different NHS organisations, this should not mean that your child’s support is delayed.

NHS continuing care for children and young people stops when a child reaches 18. For people over 18 with severe and complex health needs, support may be provided through NHS continuing healthcare for adults. As mentioned above, this is organised differently from NHS continuing care for children and young people, and there’s a different assessment process.

If your child gets NHS continuing care, and it seems likely that they will need similar support when they are an adult, this should be identified when they reach the age of 14. At 16 your child should be referred for an initial assessment for adults’ NHS continuing healthcare. They should get a decision about their eligibility by the time they are 17.

See Continuing care for more information about the assessment process, how care packages are arranged and what to do if you don’t agree with a decision about eligibility.