Is it an emergency?1. Version Control
| Version | Date | Author and Role | Detail of Change |
|---|---|---|---|
| 0.1 | 11/07/2024 | Kathryn Searle (Deputy Director of Nursing: Children and Young People) and Anita Farrant (Programme Manager) | Initial draft |
2. Approval History
| Version | Date | Approver |
|---|---|---|
| 0.1 | 11/07/2024 | SNEE Quality Committee |
3. Next Review Date
The date this policy is due for review is: 01/07/2025
1. Version Control
2. Approval History
3. Next Review Date
4. Contents
5. Statement of Overarching Principles
6. Introduction
7. Purpose
8. Equality Statement
9. Scope
10. Cross Reference to Other Policies
11. Policy Details
5. Statement of Overarching Principles
All Policies, Procedures, Guidelines and Protocols of the Suffolk and North East Essex Integrated Care Board (ICB) are formulated to comply with the overarching requirements of legislation, policies or other standards relating to equality and diversity.
6. Introduction
Some children and young people (up to their 18th birthday) may have very complex health needs. These may be the result of congenital conditions, long-term or life-limiting or life-threatening conditions, disability, or the after-effects of serious illness or injury. These needs may be so complex, that they cannot be met by the services which are routinely available from GP practices, hospitals or in the community. A package of additional health support may be needed. This additional package of care is called Continuing Care (CC). Continuing care is not needed by children or young people whose needs can be met appropriately through existing universal or specialist services through a case management approach.
Under the National Framework for Children and Young People’s Continuing Care each Integrated Care Board (ICB) has a responsibility to commission this care for eligible children and young people.
The responsible senior member of the SNEE ICB with overarching responsibility for the continuing care for children and young people and the named point of contact is Kathryn Searle reporting to Lisa Nobes, Executive Director of Nursing.
Officers can be contacted at cypquality@snee.nhs.uk
7. Purpose
The purpose of this policy is to set out how the SNEE ICB will ensure the equitable discharge of its legal responsibility to the children and young people registered with a GP in the West Suffolk or Ipswich and East Suffolk Alliances, to secure, the health care which a child or young person with complex health needs.
This policy does not change the SNEE ICB’s statutory responsibilities to comply to national standards and legislative duties, however it promotes consistency of decision making and transparency in how the SNEE ICB will comply with their obligations as commissioners of NHS funded services as stated in the Department of Health, NHS Choice Framework (2014) and the associated national policy in the delivery of healthcare.
This policy does not consider aftercare services as defined in Section 117 of the Mental Health Act 1983.
All SNEE ICB’s funding of NHS care will comply with national guidance and standards relevant at the time funding decision points occur.
All decisions will be underpinned by procedures compliant to national frameworks, guidance, standards and relevant case law. Guidance can be found on the internet at the Department of Health website.
This policy should be read in conjunction with the National Framework for Children and Young People’s Continuing Care. The policy exists to provide a local process in line with this Framework and all other legislation which underpins the Framework:
- SEND code of practice: 0 to 25 years (2015)
- Children and Families Act 2014
- Health and Social Care Act 2012
8. Equality Statement
This Policy will operate alongside the ICBs Equal Opportunities, Diversity at Work Policy, and Equality Delivery System. The ICB values the diversity of its employees, volunteers and people who are entitled to our services, irrespective of their race, disability, age, gender including sexual orientation, religion or belief, status, or grade.
The ICB assures employees, volunteers and people entitled to our services are treated fairly, equally and with respect and dignity. The ICB will challenge discriminatory attitudes and provide rules and standards of behaviour.
The use of this Policy will not discriminate directly or indirectly on the grounds of race, gender, sexual orientation, ethnic or national origin, religion, culture, disability, age, membership of a trade union or staff organisation or political affiliation.
The ICB will monitor the use of this Policy, as far as it is able, and take action if it appears that it is has a disproportionate effect.
9. Scope
This policy applies to all employees of the ICB, including fixed term employees when working within the ICB and whilst on ICB business.
10. Cross Reference to Other Policies
Please visit our Continuing Healthcare page to access the below policies:
- SNEE ICB Policy for Personal Health Budgets (PHB) and Integrated Personal Budgets (IPB)
- SNEE ICB NHS Continuing Healthcare Equity and Choice Policy
- NHS Continuing Healthcare Local Resolution Policy and Procedure.
11. Policy Details
a. The principles and core values underpinning the SNEE ICB Continuing Care Policy and Processes
The principles and core values guiding the assessment of children and young people’s continuing care are:
- Children and young people’s continuing care assessment and subsequent decisions about care are needs led, not based on diagnosis alone; and acknowledge layers of complexity in need.
- A comprehensive, multi professional assessment and subsequent decision about provision of care is made in the context of the child’s or young person’s social care, education and family needs and are as joined up as possible.
- The assessment and provision of children and young people’s continuing care and assessments are available in a variety of settings.
- The continuing care assessment draws on earlier assessments that the child or young person may have already undergone. It should integrate with educational and social care assessments to ensure agencies are working together to meet the needs of children/young people and their families/carers.
- Assessment of children and young people for continuing care considers the safety of the care to be provided and takes account of safeguarding policies and legislation.
- Decisions about the provision of continuing care supports and enhances care that family/carers are already providing to the child or young person, enabling them to develop meaningful relationships with the whole family through provision of consistent and skilled support and takes account of family circumstances and the child’s and family’s preferences wherever possible.
- The risks and benefits to the child or young person of a change of location or support (including funding implications) are considered carefully before any move or change is confirmed.
- Decisions about continuing care are fair, culturally sensitive, client-centred and do not marginalise a need because it is being managed well by the family or carers.
b. Provision of Services for Children, Young People who are Eligible for Continuing Care
Where a child or young person has a special educational need or disability (SEND), which will often be the case, then the SNEE ICB and Suffolk County Council (SCC) will endeavour to coordinate the assessment and agreement of the package of continuing care, as part of the process to develop the child’s Education, Health, and Care (EHC) Plan. Unless there is a good reason for this not to happen, continuing care will be part of a wider package of care, agreed and delivered by collaboration between health, education, and social care.
Diagnosis of a particular disease or condition is not in itself a determinant of a need for continuing care. A child or young person may have a rare condition which is difficult to diagnose but will still have support needs. The SNEE ICB undertakes to ensure that there will be no differentiation based on whether the health need is physical, neurological, or psychological. The continuing care process endeavours to be fair, consistent, transparent, culturally sensitive, and non-discriminatory.
A decision by the deciding panel on the continuing care element of the EHC plan should be secured within 35 days, and the package of care commence, to be integrated subsequently with the other education and social care elements of the EHC plan as it takes shape. The health assessor’s role would help facilitate the health input to the EHC plan.
The SNEE ICB is obliged to meet the health and care needs of children and young people who are eligible for continuing care, however, guidance does not prescribe the type of healthcare required to meet the need. SNEE ICB has discretion as to the manner of provision of continuing care services and must exercise reasonable judgement to provide the most appropriate care within the resources available, considering overall expenditure.
Provision of transport to and from school is the responsibility of the Local Authority Education Department. The ICB will consider with local authority any health issues which impact upon a child attending school to ensure that they have access to their education.
In line with the Haringey judgement, summarised in the National Framework for Children and Young People’s Continuing Care , there are clear limits to what care should be funded by the local authority, which should not be a substitute for additional NHS care for children. In this case, the High Court determined that the duty under section 17 of the Children Act 1989 did not extend to meeting essential medical needs.
There may be individual exceptional circumstances where more resources are made available by the ICB. Examples of exceptional circumstances might include:
- agreeing an incremental increase in a package of care during transitions to adult services, so that the final care package matches that of adult services, or
- where a child has exceptionally high medical and nursing needs, which requires intense, frequent interventions overnight, e.g. responding to frequent apnoea.
The SNEE ICB Continuing Care Policy has been developed as a guide to support the overall provision of continuing care, to ensure that all decisions on funding will:
- Be fair, robust, consistent, and transparent.
- Be based on the objective assessment of healthcare need, safety, and best interest,
- Work in partnership with the child, young person and their family and other carers.
- Ensure the safety, effectiveness and appropriateness of care is considered in line with the National Framework for Children and Young People’s Continuing Care
- Ensure the SNEE ICB allocates their financial resources in the most effective and responsible way, ensuring best value and compliance with their statutory duty to remain within budget each year.
- Where available, offer choice and promote personalisation.
The SNEE ICB has a duty to provide care to a child or young person with healthcare needs in order to meet those assessed needs. An individual cannot make a financial contribution to the cost of the provision of NHS healthcare. An individual, however, has the right to decline NHS services and funding and make their own private arrangements should they wish. However, where service providers offer additional services which are unrelated to the individual’s healthcare needs the individual may choose to use their own funds (self-funding) to take advantage of these additional facilities, services, and treatments.
Any additional services which are unrelated to the assessed healthcare needs will not be funded by the SNEE ICB as these are services over and above those which the NHS can reasonably be expected to fund.
Where children, young people and their families and providers decide to offer or take up additional services of the nature described above, they must acknowledge that the SNEE ICB can accept no liability for any failure by individuals to pay for the additional services provided.
Any assessment of a care will include the psychological and social care needs and the impact on the home and family life as well as the individual’s care needs. The outcome of this assessment will be considered by the SNEE ICB when arriving at a decision. However, parents have the primary responsibility for the care of their child with statutory agencies supporting them to meet the child’s identified outcomes. Continuing care assesses and supports delivery of identified health outcomes for the child. It is essential that families do not rely on continuing care support to fulfil their primary caring responsibilities for a child (e.g. to allow them to go out to work). The NHS commissioner contribution to a continuing care package only provides support for the individual child with complex needs and is not intended to support the siblings or wider family. Where additional needs for other family members are highlighted through the continuing care process, families may be referred with their consent or signposted to accessing other services.
An assessment of a child or young person’s needs may lead to a conclusion that the child’s needs are already being met by existing services, such as community nursing, or paediatrics. The suitability of existing provision will only be considered once a continuing care need has been established, otherwise there is a risk that a need will not be recognised, because the child or young person is already in receipt of some care. The wishes and feelings of the child, young person or their family will always be considered when deciding whether the individual’s health needs can be met by existing services.
c. Eligibility for Continuing Care
Eligibility for a continuing care assessment is reached following completion of a Continuing Care Checklist (CCC). and following a holistic assessment, completion of the Decision Support Tool. Both have been developed by the Department of Health to support objective and transparent decision making, eligibility and level of need. The tool is not prescriptive and professional judgement will be exercised in all cases to ensure appropriate decisions are reached regarding level of need. The CCC assessment and DST are submitted to a multidisciplinary panel where final decisions regarding eligibility are made.
There will be some children and young people whose needs are such that access to care must be ‘fast tracked’, such as “End of Life Care”. In these cases, there will be a simplified initial assessment to ensure that a decision is made within an acceptable time frame, not more than 7 days.
d. Funded Packages of Care
The DST will determine the type and amount (in hours) of support required to meet the needs of the eligible child or young person. Decisions regarding the nature and frequency of a support package are agreed, in collaboration with the family, at a multi-professional panel.
Where urgent decisions are required and were waiting for an agreement at the decision-making panel would create an unacceptable delay, the CYP Lead for CC can decide eligibility for continuing care services. These decisions should then be presented at the next decision-making panel for ratification.
The expectation is that children and young people who are eligible for continuing care will receive care at home and the risks and benefits to the child or young person of a change of location or support (including funding implications) will be considered carefully before any move or change is confirmed.
Where care at home has broken down, providing the conditions of this policy can still be met, the ICB and SCC will fund a replacement care package from an alternative provider. This could be because care providers have withdrawn from a package of care because they no longer provide a service in that geographical area, have ceased trading, or had restrictions placed on them by the Care Quality Commission. It is important that parents maintain their competencies for caring for their child as in the event of cancellation of support due to unforeseen circumstances and despite all efforts to provide alternative support, the expectation is that parents will continue to provide the child’s care.
Where it has been identified by the ICB that the safety of its staff or those providing care is at risk the ICB shall take the action it considers appropriate in order to remove or minimise the identified risk. Where this relates to the home environment the ICB will request that the individual and/or their representative take the necessary action to remove or minimise the risk. Where there is a continuing risk to the safety of ICB staff or its agents/contractors the ICB retains the right to take any action considered necessary to remove or minimise the risk including withdrawal of the offer of care and support at home.
In the event of existing care arrangements breaking down, the SNEE ICB and SCC will follow Safeguarding policies to ensure the best interests of the child or young person are maintained.
Where a child or young person is admitted to hospital, the ICB would expect their usual package of care would pause during admission. During this period the responsibility for the care and treatment of the child remains with the hospital. The ICB would expect the local CC Lead to liaise with the hospital and families to plan for appropriate discharge home and evaluate that the continuing care package continues to meet the child’s healthcare needs, and that families and carers have appropriate training and support to meet those needs where appropriate.
If an individual or their representative, refuses the care packages offered by the ICB they will not be prejudiced, should they wish to take up an offer of NHS services at a later date. This policy will be applied to such children, young people in the same way as to all those newly eligible for continuing care.
e. Consent and Voice of the Child
The Mental Capacity Act 2005 applies to those over the age of 16. The Children Act 1989 and Children Act 2004 is the legislative framework for decision making for those under the age of 16.
Young people aged 16 or over are entitled to consent to their own treatment. This can only be overruled in exceptional circumstances. Like adults, young people (aged 16 or 17) are presumed to have sufficient capacity to decide on their own medical treatment, unless there’s significant evidence to suggest otherwise.
Children under the age of 16 can consent to their own treatment if they are believed to have enough intelligence, competence and understanding to fully appreciate what is involved in their treatment. This is known as being Gillick competent. Otherwise, someone with parental responsibility can consent for them.
These principles are also applied to involvement in the continuing care process and wherever possible, even if they are not competent to give full consent, the voice of every child should be sought regarding their needs and care preferences.
f. Personal Health Budgets
The expectation is that children and young people who are eligible for continuing care will be consulted on how they would like to have their care funded through a Personal Health Budget (PHB).
A PHB is an amount of money to support the identified healthcare and wellbeing needs of an individual, which is planned and agreed between the individual, or their representative, and the SNEE ICB. It is not new money, but a different way of spending health funding to meet the needs of an individual.
Under the National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) Regulations 2013 the families of a child or young person eligible for continuing care have a ‘right to have’ a personal health budget (PHB), covering the part of their care package which would be provided by the NHS.
The ICBs duties are also set out in the National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) (No. 3) Regulations 2014 and provides the legal framework.
Where a child or young person (or their family), eligible for continuing care, requests a personal health budget, the SNEE ICB must accommodate this request. Visit our Continuing Healthcare page to access the Policy for Personal Health Budgets (PHB) and Integrated Personal Budgets (IPB).
The SNEE ICB has delegated the responsibility of setting up and monitoring Direct Payment PHBs and Integrated Personal Budgets (IPBs) to SCC in an effort to streamline and simplify the process for families. This arrangement is agreed under a memorandum of understanding.
Visit the NHS website for more guidance on personal health budgets for children, young people and families.
g. Review
All individuals in receipt of continuing care should be reviewed within three months after commencement and no less than annually thereafter. The purpose of this review is to ensure the care and support arrangements continue to meet the needs of the individual.
Should, at any point, the health needs of the individual materially change, the ICB will consider re-assessing for both continuing care eligibility and the care provision in line with the National Framework. This review of care provision could result in an increase or decrease in the care package required to meet those needs. The provision of a package of care does not constitute a commitment by the ICB to fund the individual’s care for life.
The individual and care providers should update the ICB if care needs reduce or increase so further assessment can be made to ensure the individual continues to receive the most clinically effective services and make effective use of NHS resources.
In the event that a review of an individual establishes that their condition has improved or stabilised to such an extent that they no longer meet the eligibility criteria for continuing care and a continuing care assessment confirms they are no longer eligible, the ICB will no longer be required to fund the service.
The ICB will provide 28 days written notice of cessation of funding to the individual, their family and to SCC. Any on-going packages of care that are needed may qualify for funding by SCC, subject to assessment, or the cost of some or all the package of care may need to be met by the family. The transition of care should be seamless, and the family will be notified of any proposed changes to funding involved when appropriate.
Where an individual has been assessed and their needs have changed, the ICB will consider whether the current care provision remains appropriate. Where the ICB deems the current care and support is no longer appropriate if will review the individual’s care and support plan and adjust the allocated budget to accommodate the change in health need.
If an individual becomes eligible for continuing care, who was previously solely funded by SCC, the ICB will apply the same principles as for other children, young people and their families. The ICB will seek to provide this care with the least disruption to the individual.
Where a notional PHB is in place and a provider of care significantly increases their pricing and an alternative provider can deliver the same level of care for better value, the ICB will consider a change in provider. During this process, the ICB will ensure the individual is fully informed and case management is provided throughout this process.
h. Exceptional Circumstances
The ICB recognises that children and young people who are eligible for continuing care may have highly complex health needs and that this can mean that commissioning the appropriate care and support can be a complex process. In general, the professionals involved in an individual’s care should be able to work with that individual to put together a plan of care that will meet their health, care and well-being needs and enable commissioning to take place. There may be some occasions where an independent expert may be required to support this process and the ICB may agree to fund an independent expert in exceptional circumstances. This will be on a case-by-case basis with agreement of the Director of Nursing and Quality or those with delegated responsibility.
i. Clinical Governance
Health care tasks are regulated and require delegation from a health care professional to formal carers. All delegated health care tasks must be identified in the CC support plan and the appropriate delegation procedure followed and recorded. This means that all formal carers will need to undertake training and competency assessment in relation to each delegated health care task for each child on a regular basis, as defined by the ICB CC lead or delegated clinical lead. Where a notional PHB is in place, the provider organisation holds clinical accountability for all delegated tasks and will provide the ICB with assurance that this training is in place and up to date for all carers on a regular basis.
j. Dispute Resolution
Whereby an individual or their family is not satisfied with the outcome of an assessment, or the budget allocated to them, they can complain via the SNEE Patient Advice and Liaison Service (PALS) . PALS can be contacted on Freephone 0800 389 6819 (option 1) or sneeicb.pals@nhs.net . Or on Freephone 0800 389 6819 (option 2) or sneeicb.complaints@nhs.net for formal complaints. If the complaint cannot be resolved informally and is regarding an eligibility or funding decision, this will also be managed through the PALS/Complaints team, however additional guidance is provided in the Children’s and Young People Continuing Care Local Dispute Resolution Procedure available through PALS.
k. Disputes about who has commissioning responsibility.
Occasionally there is a disagreement regarding whether the ICB or the local authority are responsible for commissioning a certain aspect of a child or young person’s care. The SNEE ICB and SCC are determined to work together to resolve these differences of opinion as swiftly as possible to avoid delay in delivery of care to the child or young person. Disputes between the ICB and SCC that cannot be resolved informally will be addressed at the CYP Complex Care Panel.
l. Transition to NHS Continuing Healthcare
Once a young person reaches the age of 18, they are no longer eligible for continuing care for children, but may be eligible for NHS Continuing Healthcare. Visit our Continuing Healthcare page to access the SNEE ICB NHS Continuing Healthcare Equity and Choice Policy
As per best practice described in the National Framework for Children and Young People’s Continuing Care transitions will be planned well in advance.
The Suffolk NHS Continuing Healthcare (CHC) team are supplied with a list of all children eligible for CC in the quarter they turn 14 years old or as soon as they become eligible if later. At the age of 17 years the CC Assessor will discuss transition to the NHS Continuing Healthcare pathway with the young person and their family and, will complete the NHS Continuing Healthcare Needs Checklist and the consent to share information form and refer to the Suffolk NHS Continuing Healthcare Team. If the screening tool indicates potential eligibility, the NHS Continuing Healthcare team will carry out an NHS Healthcare Assessment and will decide on eligibility.
If the young person is deemed eligible for NHS CHC the CYP CC Team and the NHS CHC team will work together to ensure a seamless transition to adult services.
If the young person is deemed not to be eligible for NHS Continuing Healthcare, at 18 years old the young person will transition to adult universal services. If the young person or their representative wishes to appeal this decision, they will need to do so in writing as per the SNEE ICB NHS Continuing Healthcare Local Resolution Policy and Procedure, which can be accessed via our Continuing Healthcare page.
m. Policy Monitoring and Review
This policy will be audited as to effectiveness of ensuring choice and equity in the delivery of continuing care to children and young people across the West Suffolk or Ipswich and East Suffolk Integrated Care Systems.
This policy will be reviewed every two years, or if there are changes in national guidance on individual choice or continuing care.
An audit of cases will be undertaken every 6 months by the CYP CC Lead – this will check that the continuing care process has been followed in terms of verification of decision, issue of decision letter to the patient and the commissioned care package is line with this policy and has been approved as per the ICB delegated limits. The audit findings will be presented to the Executive Chief Nurse and shared every 6 months with the SNEE Quality Committee, with assurance and actions plans from the ICB CYP CC Lead that any corrective action required will be taken.
12. Appendix A: Abbreviations and Definitions
| Abbreviation / Item | Definition |
|---|---|
| CC | Continuing Care |
| CCC | Continuing Care Checklist |
| CHC | Continuing Healthcare |
| CYP | Children and Young People |
| DST | Decision Support Tool |
| EHC | Education Health and Care |
| ICB | Integrated Care Board |
| ICP | Integrated Care Partnership |
| ICS | Integrated Care System |
| IPB | Integrated Personal Budget |
| NHS | National Health Service |
| PALS | Patient Advice and Liaison Service |
| PHB | Personal Health Budgets |
| SCC | Suffolk County Council |
| SNEE | Suffolk and North East Essex |