Children and young people’s continuing care

Initially, to understand if a referral is required to CYP continuing care, a multi-disciplinary meeting decides if your child has needs that cannot be met by the routine or specialist commissioned services and requires additional health services to meet their needs.

The multi-professional meeting should ideally consist of; a health professional (completing the checklist), a social worker, and an education representative (and anyone who you feel is relevant); as parents/carers you will need to be integral to this meeting along with your child.

As parents or carers, you will need to be fully aware of what continuing care is and what the process entails - this should be communicated within the meeting.

It is important that the agencies involved in your child’s care work together, and with you through the process of continuing care.

If the child or young person meets the referral criteria for assessment, then contact is made to the parents or carers of the child or young person to undertake the children and young people (CYP​​​​​) continuing care assessment.  

At the assessment, the CYP continuing care nurse discusses with the family all the elements of the children and young people’s continuing care national framework in order to gain a wider picture of the whole family’s needs including environmental, educational and social factors which help to form a holistic assessment.

The CYP continuing care nurse also takes into consideration the views and aspirations of the family and the child or young person where possible, as to what support they feel they need. A recommendation is made collectively by a multidisciplinary team (MDT) who consider the available clinical evidence. This recommendation will then inform an offer of support and will be presented to an independent panel.

As part of the process, the assessment requires information such as reports and risk assessments from other professionals involved in the child or young person’s care. This is to form evidence to support the assessment and decision process. Consent from parents or a person with parental responsibility is sought at the assessment in order to collate the information.

Following the assessment process, a recommendation of eligibility (based on the national framework) is then considered  multidisciplinary team (MDT), and the assessment is taken to a multi-agency panel so that health, education and social care staff can discuss, work together and decide if the child or young person has a continuing care need.  This allows other services to be aware of the child or young person and act accordingly as to who can support your child or young person’s needs best.

The process should be completed within six weeks of the referral being received.

However, flexibility needs to be considered depending on the complexities of individual assessments.  If the child or young person meets the criteria for continuing care the family are notified of the decision and the continuing care nurse begins to look at a suitable package of care considering, the child/young person and family’s needs.

Since September 2014, under section 26 of the Children and Families Act 2014, children and young people with a special educational needs and disability (SEND) are entitled to a single plan which consists of a multi-professional assessment to agree an Education, Health and Care Plan (EHCP).

The EHCP process is a coordinated assessment of a child or young person’s needs, based on multi-professional input and focussed on the outcomes which make the most difference to the child or young person and their family.

We therefore intend to align the children and young people's continuing care process with the EHCP processes where possible and a change in need may trigger a review of the EHCP.

The joint assessment will ensure outcomes are established across education, health, and social care that the views, interests and aspirations of the child or young person and their family are documented and that collaborative joint working leads to good practice. If your child is eligible for continuing care the support received from our service will be named and described within the EHCP.

The children and young people's continuing care team works with staff from other organisations, such as social services and education, to look after children and young people with very complex, technology-dependent nursing needs, enabling them to have an improved quality of life. Care can be provided at home, in a residential school or placement or hospice.

The package of care is then delivered to the child or young person and a review takes place after three months, then yearly. A review will also be required if the child/young person’s needs change before this time. 

The funding for a care package is either provided solely by health or depending on the outcome of decisions at the panel there may be elements of social or educational funding discussed to supplement the package. NHS Birmingham and Solihull commissions the care and works with local authorities to ensure quality and safety of provision and regulation of care.

Alternatively, to this the option of a personal health budget can be discussed with the child or young person’s family or carers. A personal health budget is offered to all children and young people who are eligible for children’s continuing care, and this offers families and carers some flexibility to arrange their own care to suit their individual needs and circumstances – for instance through employing their own personal assistant.

If a child or young person needs an urgent package of care because of a rapidly deteriorating condition, which may be entering a terminal phase, we will use the fast track tool.

An appropriate clinician will complete the assessment to determine eligibility for NHS continuing care and following screening of the referral if the fast track criteria is met arrangements will be made to provide care as quickly as possible.

Many children and young people provided with continuing care will remain dependent upon others for all of their care throughout their lives.

The aim of providing continuing care for this group is to enhance their quality of life and empower and support their families and carers to manage and understand their conditions and situations.

At 14 years of age, the young person should be brought to the attention of NHS Birmingham and Solihull as likely to need an assessment for NHS continuing healthcare.

At 16 to 17 years of age, screening for NHS continuing healthcare should be undertaken using the adult screening tool, and an agreement in principle that the young person has a primary health need, and is therefore likely to need NHS continuing healthcare.

At 18 years of age, full transition to adult NHS continuing healthcare or to universal and specialist health services should have been made, except in instances where this is not appropriate

There are different arrangements for continuing care for people aged under 18. 

Some young people, who are eligible for children's continuing healthcare, may also become eligible for continuing healthcare for adults.  However, the young person would need to have a new assessment for adult continuing healthcare. This is part of transition planning. Any person who is eligible for children's continuing healthcare should be referred for an assessment for services when they are an adult, once they become 16 years old. This provides time for an assessment to be completed and for any discussions about the care NHS Birmingham and Solihull will offer, before their 18th birthday. 

The framework covers young people up to their 18th birthday. Thereafter, the National Framework for NHS continuing healthcare and NHS-funded nursing care and the supporting guidance and tools should be used. 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 (CHC) or NHS funded nursing care once they turn 18. If your child is near to reaching the age of 18, a member of the adult CHC team will  provide guidance with regards to referring into the adult CHC service. 

If you think your child should be assessed for continuing care, talk to a health or social care professional who works with them. They will make a referral to NHS Birmingham and Solihull if appropriate.