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Continuing care

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This advice applies in England only.

Continuing care is an NHS-funded care package for children and young people aged under 18 with complex health needs arising from illness or disability.

In this article

What is a continuing care?

Continuing care is an NHS-funded care package for children and young people aged under 18 with complex health needs arising from illness or disability.

A continuing care package for children is different from NHS continuing healthcare for adults. Children who receive a continuing care package are not automatically eligible for continuing healthcare for adults when they turn 18.

Who is eligible for continuing care?

Continuing care is available for a child or young person up to age 18.

Children who get continuing care will have complex needs that a GP, hospital or community or specialist services can’t meet.

Typically, these complex health needs arise from:

  • A congenital or rare condition.
  • Long term, life-limiting or life-threatening conditions.
  • Disability or the aftereffects of serious illness or injury.

Their needs may be physical, neurological, or psychological.

Can my autistic child get a continuing care package?

A child who is autistic or has a learning disability, or both, may have a continuing care need if they exhibit challenging behaviour.

Sometimes children with challenging behaviour have their needs met through special educational needs and disability (SEND) provision. But it may be possible for your child to receive a continuing care package to protect their health, safety, and wellbeing.

How do I apply for continuing care?

Only a health or social care professional can make a referral to the integrated commissioning board (ICB) children and young people continuing care teams. They must seek consent from you or your child’s parent before doing so.
The professional making the referral must be able to provide evidence on your child’s needs.

Various health professionals can make a referral including:

  • GPs.
  • Hospital practitioners.
  • Community and specialist health services.
  • Community nursing teams.
  • A school nurse.
  • A CAMHS professional.
  • A social worker.

ICBs should have a clear process for professionals to make a continuing care referral.

How will they assess my child?

ICBs should have a process in place that follows the National Framework for Children and Young People’s Continuing Care when assessing a child’s eligibility for a continuing care package.

They usually follow a stepped process that involves pre-assessment, assessment, recommendations, decision-making and arranging the care package.

Pre-assessment

Once they receive a referral, the ICB children and young people’s team will carry out an initial pre-assessment. This is to see whether your child is likely to have continuing healthcare needs across 10 areas of need.

This is a paper assessment. ICBs typically use a continuing care pre-assessment checklist to decide whether to proceed to a full assessment.

Assessment

If the ICB decides to go ahead with a full assessment, it will nominate a health practitioner for children and young people. They must have the relevant skills and knowledge to assess your child.

The practitioner will look at:

  • The preferences of the child or young person and their family. The assessor will seek the views of your child and family, including family members who support them.
  • Holistic assessment of the child or young person. The assessor collates existing health and social care assessments and considers the health needs of family members.
  • Reports and risk assessments. The assessor will collate these from all professionals involved in your child or young person’s care.
  • The decision support tool for children and young people. The assessor uses the decision support tool to make a judgement on your child or young person’s needs,

The practitioner uses the decision support tool to assess your child or young person’s needs, and level of need, in 10 areas:

  • Breathing.
  • Eating and drinking.
  • Mobility.
  • Continence and elimination.
  • Skin and tissue viability.
  • Communication.
  • Drug therapies and medicines.
  • Psychological and emotional needs.
  • Seizures.
  • Challenging behaviour.

Recommendations

The nominated health practitioner draws up recommendations and presents them to a continuing care decision-making panel. The panel decides whether your child or young person has continuing care needs.

Panel members are independent of the people involved in the assessment process.

It should not matter if you child does not have a formal diagnosis for a particular disease or condition. The assessment process should also not differentiate between whether their condition is physical, neurological, or psychological.

Decision

The panel should decide within six weeks and notify your family both verbally and in a letter within five working days .

Depending on its decision, the panel will agree a package of care. Some care may be provided through existing services; some care may be specially arranged.

A separate panel may have to agree the level of funding required.

Arranging support

The health assessor will work with your family and other practitioners to come up with options for your child’s care. Your child’s support needs and preferences, rather than by what providers offer, should shape these options.

The ICB should put the package of continuing care in place as soon as possible after informing your family of their decision that your child has continuing care needs.

Review

The ICB should review your child’s care package three months after it starts and then annually.

If your child has special education needs and disabilities (SEND), the ICB should aim to synchronise their continuing care annual reviews with their Education, Health and Care (EHC) plan annual reviews.

Disputes

If you are unhappy with the panel’s decision, you may be able to request a review through the ICBs complaint’s process.

Personal budgets for continuing care

Families of a child or young person eligible for continuing care have a “right to have” a personal health budget, covering the part of their care package that the NHS would normally provide.

When a family or child asks for a personal health budget, the responsible ICB must arrange one in one of the following ways:

  • As a direct payment made to the young person or their family.
  • Agree a notional budget the ICB spends following discussions with your child or young person, and your family (or other representative), about how to secure the provision they need.
  • Transfer of a real budget, agreed as above, to a person or organisation that applies the money in a way agreed between the ICB, the child or young person, and their family.

See An NHS guide to personal healthcare budgets for family and carers.

What happens when my child turns 18?

Young people eligible for children’s continuing care may also become eligible for continuing healthcare for adults. But eligibility is not automatic.

The young person will have to go through a transition process, including a new assessment, to determine if they are eligible for adult continuing healthcare.

A child who gets continuing care funding should be referred for an adult assessment when they turn 16. This is to ensure that social care services assess your child for adult continuing care funding and discuss their future care needs before their 18th birthday. 

Read more about the transition process to adult continuing healthcare in the National Framework for Children and Young People’s Continuing Care.