We pay for trained and competent care workers to provide care for children and young people with complex health needs. 

They must meet the threshold via a needs assessment document. This is a comprehensive account of the child and young person’s health, social care and educational needs.

We act on behalf of the Clinical Commissioning Groups who are clinically-led statutory NHS bodies responsible for the planning and commissioning of health care services for their local area.

The service supports children and young people between the ages of 0-17 years old.

Who can use the service?

The service is used by parents, carers, families and the child or young person with complex health needs.

Are there any costs?

There are no additional costs to you for the support provided.

How can I refer?

Parents or carers can liaise with their local health professional who provides the majority of health support for their child.

They need to complete a pre-assessment checklist, alongside education and social care if they are supporting the family.

We then use an Education Health and Care Plan to understand what the child or young person’s needs are.

What happens after referral?

After the pre-assessment

After the pre-assessment (or checklist) is completed the form is reviewed by nurse assessors. They are fully qualified nurses with experience of caring for children in the community and hospital environment.

The nurses will determine if there is an indication for a full Decision Support Tool (DST) to be completed. This is an in-depth document about the child or young person’s needs.

This is not confirmation that the child or young person is eligible for continuing care.

Decision Support Tool

If a full DST is needed, the nurse assessor will write to parents and inform them of this.

If there is no indication to proceed to a full DST parents will be sent a letter with a reason for this.

The in-depth DST may take around 4 hours to complete, and gives a bigger picture of the child or young person’s health, social care and educational needs. It focuses on health needs and what aspects of these needs are not being met by the locally commissioned universal and specialist health services.

Universal services can be:

• Community nurses
• School nurses

Specialist services can be:

• Children and Adolescent Mental Health Service (CAMHS)
• Speech and language services

The nurse assessor from the service will be present at this meeting alongside the services that came together to complete the pre-assessment checklist.

After the DST is completed

The DST will be taken back to the office and read through using supporting information collated at the DST meeting. This will show in detail what the child or young person’s needs are and how they are normally met or not met.

Everyone at the meeting is asked if they believe the child or young person meets eligibility and why this is.

The child or young person’s and parental views are detailed. They are referred to in relation to how the services work together to meet identified needs.

Recommendations are written by the nurse assessor for what the support looks like for the child or young person, and are written in relation to what the parents have requested, according to their child’s health needs.

Continuing care multi-agency panel

The completed document and accompanying supporting information is taken to the next available panel. Here a collective of health, social care and education senior representatives form a panel to discuss cases referred into the service. They also discuss cases that are currently on the caseload. The panel ratify and make decisions about cases.

The panel reach decisions and the outcome of the panel are given formally by letter to the parents, with the members of the DST meeting copied in. A rationale for decisions will be given within the letter. Parents may at times be informed verbally if time permits or parents have requested this.

Continuing care

The child or young person must be eligible. If we find appropriate support at home or other appropriate setting, we will either:

• Pay a care agency for the healthcare, or
• Discuss a personal health budget with parents

Support at home

This can take several months to put in place. This is due to:

• The recruitment process of care workers
• The nature of training
• The competence required for care workers

Generally the care workers need time to get to know and understand how to care for the child or young person.

Depending on the complexity of the child or young person’s needs it can take between 2 and 6 months for all the support to be in place. The nurse assessor will explain the timelines for care provision.

Who will we see?

You will meet with multi-agencies or services. They should be known already to the child or young person.

What happens when I come to the service?

If you believe your child has complex health needs and you need extra help at home to help you look after your child, you should seek advice from the health professional involved with your child. This could be their community nurse, school nurse, social worker, teacher or headteacher.

You can contact the service directly. After that we would advise you to contact the relevant professionals.

What happens when I become an adult?

From the age of 14

We follow an internal transition process. We inform the adult continuing health care service about young people who will be transitioning into adulthood.

Between the ages of 14 and 17

We will inform the adult team twice a year about their needs. We would discuss the likelihood that they may need adult continuing health care.

At around the age of 17

The children’s continuing care service will make arrangements to review the care package of support. We do this with the relevant adult internal continuing health care nurse assessor. We will be completing a checklist for the adult adult team. This is to see if they need a full adult decision support tool assessment to get support from the age of 18.

The adult service follows a similar process to the children's service. This goes from presenting information to the panel to informing you of the outcome of panel.

Please note: children’s continuing care ceases on the day before the young person’s 18th birthday. The adult continuing health care process and support takes over from the 18th birthday if you are eligibile for the service.