Understanding local children and young people's palliative and end of life care supply

ICBs can access data from the following providers to understand the extent to which they are meeting the demand for this care and support.

Specialist children and young people’s palliative and end of life care providers

Some of these are provided by NHS trusts operating tertiary children’s hospital services. In some areas, they are funded and provided jointly with voluntary sector children’s hospices services. In some areas, they are provided solely by children’s hospices.

NHS trusts providing inpatient and/or community children’s services

Children may need palliative and end of life care while under the care of one or more type of secondary or tertiary children’s health services. These will include, but are not limited to:

  • neonatal services
  • community children’s nursing
  • community paediatrics
  • general paediatrics
  • continuing care for children and young people
  • paediatric gastroenterology, hepatology and nutrition
  • paediatric inherited metabolic medicine
  • paediatric intensive care
  • paediatric nephrology services
  • paediatric neurodisability services
  • paediatric neurology services
  • paediatric oncology services
  • paediatric respiratory services.

Voluntary sector services

Children’s hospices and palliative and end of life care services provide short break care, end of life care, specialist play, pre-bereavement and bereavement support. Some also provide day care facilities and home-based care services.

Some children’s hospice and children and young people’s palliative and end of life care charities have a specialist medical team and can support complex care such as long-term ventilation, others have a greater focus on social care.

Primary care

The Quality and Outcomes Framework (QOF) includes indicator PC001 the contractor establishes and maintains a register of all patients in need of palliative and end of life care/support irrespective of age. This includes children and young people.

A patient is included on the register if they are likely to die within the next 12 months (clinicians often find it easier to ask ‘the surprise question’ – ‘Would I be surprised if this patient were still alive in 12 months?’). They are also included if they have advanced or irreversible disease and clinical indicators of progressive deterioration and thereby a need for palliative and end of life care.

Together for Short Lives’ children and young people’s palliative and end of life care service mapping provides recent active caseload data for some UK children and young people’s palliative and end of life care providers, including NHS trusts and children’s hospice and palliative and end of life care charities.