Children and Young People’s Continuing Care

What is Continuing Care?

Children and young people (0-17) who have complex health needs may require additional support that cannot be met by existing NHS universal and specialist health services.  This additional health support is assessed and thereafter agreed via an NHS Continuing Care Assessment process on behalf of Integrated Care Boards (ICBs) and is delivered through a tailor-made commissioned package of care.

It is determined locally that the Midlands and Lancashire Commissioning Support Unit’s Children and Young Peoples team is responsible for carrying out Continuing Care Assessments.  This assessment is needed to understand if a package of care is required to support a child or young person with complex needs which is then managed by a Children’s Complex Care Nurse Assessor.  The National Framework for Children and Young People’s Continuing Care (2016) is guidance provided by the Department of Health and Social Care, and is used by Nurse Assessors to manage the process of Continuing Care.

It is recognised that there should be a multi-disciplinary team (MDT) holistic approach throughout the Continuing Care process, which includes health, education, and social care, as well as other agencies involved in supporting your child’s needs.  This multi-disciplinary team consists of professionals who represent local services who are known to your child.

What information will we collect?

We will collect and process data from a number of sources to ensure individuals cases can be processed. This will include requesting records from various organisations who are involved in your child’s care e.g., GP’s, Local Authorities, Hospitals, Mental Health teams, etc. If they cannot provide records, we will let you know.

These records may include:

·        Physical or mental health details

·        Racial and ethnic origin

·        Sexual orientation

·        Details of care

·        Religious or similar beliefs

·        Sensitive information with regards to physical and mental health conditions

·        Information pertaining to the referral, assessment, and care plans of the patient

·        Family and relationship details

·        School and educational information

How will my information be used and shared?

Under the UK General Data Protection Regulation (UK GDPR) consent is not required for the processing of personal and healthcare data in the context of NHS Continuing Care (CC).

Information will be shared with relevant health and social care professionals who are involved in the Continuing Care process in order to determine eligibility for care. This may include other agencies involved in supporting your child’s needs as described earlier on this page.

All professionals involved in the process must maintain strict confidentiality regarding any information that is shared as part of any CYP Continuing Care process. Information may be shared at several points during the assessment process where required.

Information will not be shared with friends, family or other individuals not involved in the process without prior consent from the patient or the appointed patient’s representative. Individuals have the right to withdraw consent to share information with friends/family/representatives at any time.

For further information regarding how your information is processed and how it is used within the NHS, please see MLCSU’s Privacy Policy:

How do I access a copy of my information?

Should you wish a copy of any of your information then please initially speak to a member of the CYP team who can advise. If they are unable to provide it easily, they will re-direct you to the appropriate department so you can make a ‘Subject Access Request’.

How can you access Continuing Care?

If it is identified that you require some additional support to meet the complex health needs of your child, the multi-disciplinary professionals involved should collectively meet with you as parents/carers as well as your child (where possible).  This is to understand your child’s needs and how the collective agencies can provide support by accessing statutory provision, or commissioned support available such as NHS services, Local Authority services (social care and education) and other services such as charitable respite or short breaks.  The multi-disciplinary team (MDT) will also gain an understanding of what health needs are not being met, and address this as part of the MDT meeting.

Parents are not able to refer directly into Continuing Care.  It is advisable for them to discuss any concerns with a member of the multi-disciplinary team involved with the child or young person.

If your child requires information about Continuing Care a member of the MDT or the Children’s Complex Care Nurse Assessor will explain the process and will find appropriate ways to communicate effectively. They will listen to your child, capturing both their voice as well as yours, and support through the process of Continuing Care.  Where necessary they will have discussions with your child alongside you, being mindful of consent.

Any professional involved can initiate an MDT meeting if there are concerns and issues with your child’s complexity of needs.  This MDT may consist of several professionals such as your GP, Social Worker, Education Representative, Community Children’s/School Nurse, Specialist Nurse including, Child and Adolescent Mental Health Service, Learning Disability Nurse (amongst others).  The complexity of your child’s needs may also become apparent as part of another pre-arranged meeting, such as a Child in Need or Education Health and Care Plan meeting.  It is expected that as a parent or carer you will be integral to the MDT meeting, as well as your child (where possible), where all your child’s needs may be discussed.

The MDT need to firstly pursue what is available from the NHS and other services to consider how any current support being provided can be adjusted to meet your child’s needs in an individualised manner. The MDT may also consider making new referrals to other NHS services and pursuing other agency input. This early help and support can in turn help you to manage your child’s needs more effectively.

If the NHS universal and specialist services, and other local services known to the MDT have been pursued and are not able to alleviate some or all your child’s needs, the MDT members should consider completing a Continuing Care checklist, which is sometimes known as a referral.  The checklist is the first stage in the Continuing Care process and should provide an indication of whether a further and more in-depth Assessment is required.  The Checklist is a document that will possibly need an hour or so to complete.

The following information is required within the checklist:

  • Personal details, background information and consent from parents/carers and the child or young person where possible
  • Reason for referral which should be a brief rationale that supports the request for Continuing Care support to be considered
  • Overview of any assessments that have already been undertaken such as Physio reports or plans / Early Help Assessments / Education Health and Care Plan
  • Brief summary of the current Health, Educational and Social Care needs of the child or young person.
  • All ten health domains to be considered regarding the level of need they are felt to be at, along with a brief rationale to support the level of needs chosen
  • Unmet health needs to be identified, documenting all current support in place and what additional support is felt to be required, in order to meet these needs.

Your child does not become eligible for Continuing Care at the checklist stage, this is determined after the more in-depth Continuing Care Assessment has taken place.

If the checklist indicates that a full Continuing Care Assessment is needed the Nurse Assessor from the Continuing Care Team will facilitate a meeting with you and your child, and members of the MDT.  Please be advised that the assessment can take between 2 to 4 hours on the day.  The Continuing Care Assessment gives a deeper understanding and awareness of your child’s needs and should identify any unmet health needs, a document is used to collate the information known as a Decision Support Tool (DST).  Following the meeting the Nurse Assessor gathers all the information and makes recommendations as to what additional health support is required for your child via NHS Continuing Care.

The Continuing Care Assessment comprises of 4 parts, which includes:

  • Preferences of the child or young person and their family
  • Holistic assessment of the needs
  • Reports and risk assessments
  • Use of a Decision Support Tool

It is important that your child can express their views and preferences in a way that is important to them.  If your child is unable to express their views it is important that the Nurse Assessor captures this from you, capturing your child’s story about them including their health, wellbeing, and emotional needs.  We also require your views and preferences as a family, along with any supporting evidence you have in relation your child’s level of care, education, and health needs. Supporting evidence can consist of health care logs, a diary of health requirements (such as frequency of suctioning or behaviour interventions), hospital letters, care plans, behaviour support plans, specialist reports, educational and social care assessments/reports.

The Decision Support Tool provides a way to assess your child’s complex health needs across 10 health related domains, each of these domains have varying levels of needs showing either;

  • No additional needs
  • Low level of needs
  • Moderate level needs
  • High level of needs
  • Severe level of needs
  • Priority needs

Each health domain will be discussed in detail to capture the complexity, intensity, and frequency of that health need and to also understand the demands that this places on you on a 24-hour basis.  It is important that we understand and document a realistic picture of what you are managing and dealing with every day/night, in order to support and meet your child’s complex health needs in a safe and appropriate way.

The Nurse Assessor will review the overall picture of needs described to them and will provide recommendations relating to any potential complex health needs that are not being managed by locally commissioned universal and specialist NHS services.

Eligibility for Continuing Care is not dependent upon a single or multiple medical conditions, or diagnosis but is focused on understanding your child’s overall complex health needs, which is inclusive of any education and social care needs.  These needs can include learning disability, mental health needs, physical disability and challenging behaviours.  We need to understand your preferences and views as parents and carers, and additionally important that wherever possible we capture what is important to your child, and what their lived experience of their needs and disability show.

Throughout the whole process we will need to use the information within your child’s Education Health and Care Plan (if they have one).  The Continuing Care process should inform, advise, and combine information within this plan to ensure a partnership approach.

The Children and Young People’s Continuing Care service will explain the Continuing Care process and will keep you informed about pertinent aspects by letter, phone, video conferencing or face to face meeting.

Who makes the decisions after a Continuing Care Assessment has been completed?

What happens next?

The case is presented by the Children’s Complex Care Nurse Assessor to a multi-agency panel of professionals, who will review and listen to the Nurse Assessor presenting your child’s case, inclusive of both you and your child’s voice, and story behind their health needs.  These senior professionals represent Education, Social Care and Health and will decide on whether your child has a Continuing Care need, and who are eligible taking into consideration;

  • The recommendations from the Nurse Assessor
  • Evidence and information available supporting the levels of health needs across the health domains

Depending on the decision, a package of care is then agreed; some of this care may be provided through existing NHS and Local Authority services (in a joined up manner), but some may need to be bespoke commissioned by the Continuing Care service.  As a service we work with differing providers of healthcare, which will be discussed with you prior to arranging and paying for the package of care.

Personal Health Budgets

A Personal Health Budget is a way of delivering the healthcare support, providing choice, control, and flexibility on how your child has their care delivered.  This will be discussed with you after the outcome from the multi-agency panel, indicating that eligibility has been confirmed.

Personal Health Budget offers choice and control to parents in how the care is delivered in a manner that meets your child’s needs, in a flexible way that you can control.

They can be offered in three ways:

  • Notional
  • Third Party
  • Direct Payment

For further information please go to the Personal Health Budgets section of this site

The Continuing Care Review Process

The Children and Young people’s Continuing Care Team will continue to review the package of care to ensure that the needs of your child are being met.  The reviews routinely occur at 3 months after the care package has been set up, and then reviewed annually.

Your child’s needs may alter and require a change in care package provision.  This can either mean an increase or decrease in hours, or even a change in care provider.  In these circumstances the Continuing Care Nurse Assessor will discuss any changes required.

Your child’s eligibility for Continuing Care may change as their needs change and will be discussed within the MDT alongside you and your child (where feasible).

Transition into Adulthood

If your child is in receipt of a Continuing Care package at the age of 14, the transition process should be instigated.  From this age the annual review process will consider what is required in relation to their needs when moving into adulthood.  The Children’s Complex Care Nurse Assessor will provide you and your child with information and support through the transition process.

When your child reaches 18, the adult NHS Continuing Health Care arrangements apply (National Framework for NHS Continuing Healthcare and NHS Funded Nursing Care July 2022 revised).

There are significant differences between Children and Young People’s Continuing Care and NHS Continuing Health Care which is why we will assess any young person in receipt of Continuing Care between the ages of 16-17, to see if they are likely to be eligible for NHS Continuing Care when they turn 18.

If your child is eligible for Children and Young Person’s Continuing Care, it is not a guarantee of them becoming eligible for adult Continuing Health Care when they reach 18, as they will need to be assessed through the adult Continuing Healthcare National framework.