How children and young people’s palliative and end of life care connects with other needs and services

So that care is coordinated for children and young people with life-limiting or life-threatening conditions, ICBs may wish to take a system-wide approach, to ensure multidisciplinary working across different teams and professionals. This page suggests which services may need to be involved in providing palliative care.

Continuing care for children and young people

As set out in the National Framework for Children and Young People’s Continuing Care, a continuing care package will be required when a child or young person has needs arising from disability, accident or illness that cannot be met by existing universal or specialist services alone.

In the framework, the government states that children and young people who require fast-track assessment because of the nature of their needs (such as a palliative and end of life care need) should be identified early and the child or young person or young person’s needs met as quickly as possible.

The continuing care process should not restrict access to end-of-life care for children and young people who require immediate support over a shorter period, and should not result in any delay to appropriate treatment or care being put in place.

Continuing healthcare for adults (including young adults over the age of 18)

As set out in the National Framework for Children and Young People’s Continuing Care, many children and young people provided with continuing care will depend on others for all of their care throughout their lives.

Every child or young person with a package of continuing care who is approaching adulthood should have a multi-agency plan for an active transition process to adult or universal health services or to a more appropriate specialised or NHS Continuing Healthcare pathway.

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, which is subject to legislation and specific guidance. It is important that young people and their families are helped to understand this and its implications right from the start of transition planning. There should be a single key contact for families of a young person approaching transition.

The framework summarises the following key milestones:

  • At 14 years of age, the young person should be brought to the attention of the CCG as likely to need an assessment for NHS Continuing Healthcare.
  • At 16-17 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.

ICBs can access the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care here. 

Other children and young people’s health services

Women and Children is one of six National Programmes of Care (NPoCs) overseeing the commissioning of specialised and highly specialised services. NHSE details the work of Women and Children NPoC here, which consists of 15 clinical reference groups (CRGs). These CRGs have produced specifications for services that may provide or interact with children and young people’s palliative and end of life care services:

  • Paediatric neurosciences (E04)
  • Congenital heart services (E05)
  • Metabolic disorders (E06)
  • Paediatric critical care
  • Neonatal critical care (E08)
  • Specialised paediatric rheumatology
  • Specialised paediatric gastroenterology
  • Specialised paediatric rheumatology
  • Specialised paediatric respiratory
  • Specialised paediatric palliative care
  • Specialised paediatric allergy, immunology and infectious disease
  • Specialised paediatric endocrinology
  • Specialised surgery in children

Paragraph 3.46 of the NHS Long Term Plan states that paediatric critical care and surgical services will evolve to meet the changing needs of patients, ensuring that children and young people are able to access high quality services as close to home as possible. Paediatric networks, which will involve hospitals, NHS staff and patients and their families, will ensure that there is a coordinated approach to critical care and surgical services, enabling children and young people to access specialised and non-specialised services in times of urgent, emergency and planned need.

Children and young people who need palliative and end of life care often have a range of complex health needs, including for underlying life-limiting or life-threatening conditions they have. Providers may need to take a system-wide approach to engage with the range of paediatric networks relevant to the children and families that they serve. 

Education

Children and young people who need palliative care are legally entitled to education. They access education at early years, schools and further education settings depending on:

  • the nature of their condition
  • the way in which it develops
  • the treatment that they need and the impact it has on them

ICBs can take a system-wide approach with local authorities and education providers to help make sure children and young people receive coordinated palliative care in education settings. They can enable children and young people to access education and move seamlessly between home, hospital, children’s hospices and education settings, taking into consideration the extent to which a child’s condition interferes with their engagement with school. Some scenarios are depicted below.

  • The child maintains a steady level of engagement with the school with successful medical management and appropriate actions by school.

  • The child’s engagement reduces over time as their condition deteriorates, requiring a flexible approach to planning and provision.

  • The child’s engagement with schools fluctuates widely in relation to periods of treatment and remission. Periods of absence and re-admission will require regular revision of plans.

  • Initially the child is engaged with school but a significant event leads to a sudden disengagement. This may require sensitive management of the school community.

  • The child’s engagement with school increases over time as their treatment has a positive impact, requiring a flexible approach to planning and provision and high aspiration.

A majority of children and young people who need palliative care have a special educational need (SEN) as defined in the Children and Families Act 2014. The support they receive in education should depend on their needs and not on a specific diagnosis or condition.

Legally, local authorities must assess a child or young person’s education, health and care (EHC) needs where they may have SEN. This may lead to the child or young person having an EHC plan.

Some children and young people, such as those with genetic disorders, or metabolic diseases such as Batten disease, will have profound and multiple needs. These include associated learning, physical or sensory difficulties. They will need considerable support in addition to, or different from, their peers.

Children diagnosed later on in childhood may experience an increase in their SEN.

ICBs may wish to consider that some children and young people who need palliative and end of life care will not have a SEN. This may include, for example, some children and young people affected by cancer, heart disease or cystic fibrosis. All have legal rights in education under the Equalities Act 2010.

Legally, early years settings, schools, colleges and local authorities must prevent unlawful discrimination, whether directly or indirectly. They must ensure that they do not treat children and young people with disabilities less favourably than others. They must make ‘reasonable adjustments’ to ensure that they do not disadvantage or discriminate against a child or young person.

The government has provided statutory guidance on supporting pupils at school with medical conditions.

Social care

Children and young people with life-limiting or life-threatening conditions and their families rely on social care. Local authorities commission children’s social care, which includes the following:

  • short break services
  • holiday play schemes
  • care at home
  • some aids and home adaptations

This support is a general duty, meaning that the council must provide a range of services for all children in its area who are deemed to be ‘children in need’ in order to “safeguard and promote” their interests.

Children under 18 who are eligible to receive social care are called ‘children in need’. All disabled children are eligible for an assessment from their council to determine whether they need social care support. Councils will have their own criteria for determining whether someone is eligible for support.

Some children who are suffering from, or at risk of significant harm, will also receive support to safeguard them and promote their welfare.

Children and young people with life-limiting or life-threatening conditions rely on frequent short breaks for respite, provided by skilled people who can meet their often complex health needs. This may be for only a few hours or overnight for a few days at a time. Parents or carers support children and young people with a life-limiting or life-threatening conditions 24/7, so social care is important to help them relieve this stress, catch up on sleep, spend time as a family and do the things that other families do.

Frequent short breaks for respite for children and young people with life-limiting or life-threatening conditions combine both health and social care. There is a legal precedence which establishes that the NHS is responsible for short breaks where the scale and type of nursing care is such that it is outside that which can be provided by the local authority.

Support from other agencies

Children and young people who need palliative and end of life care and their families may also need other support:

  • Moving to more suitable housing: more space may be needed to accommodate bulky equipment and store medicines and feeds, for example.
  • Leisure and play: provision of play for all children, including those who need palliative and end of life care, is important.
  • Transport: many families need access to broad wheel-base vehicles which can transport bulky equipment with their child or young person; some of which may be life-sustaining, such as oxygen cylinders, for example. A child may be entitled to free transport from their local authority if they cannot walk to school because of their special educational needs and disabilities (SEND) or mobility problem.
  • Benefits: parents or carers may need support to understand and access the welfare payments that they and their child or young person are entitled to.