Palliative and end of life care statutory guidance for ICBs

NHS England’s Palliative and End of Life Care Statutory Guidance for Integrated Care Boards (ICBs) sets out a series of key actions that ICBs should consider to meet the palliative and end of life care duty. For children and young people, these mean:

Children and young people who need palliative and end of life care – and their families – should be supported by a whole system approach. This means that care and support is provided by the right professional, at the right time and in the right place. It also includes access to out of hours palliative and end of life care.
A child or young person’s palliative and end of life care needs, and complexity of their needs, will fluctuate throughout their journey. This means that a flexible model of care is required. No single provider can provide for all needs: children and their families will require access to a wide variety of non-specialist palliative and end of life care delivered by primary, community, acute and urgent care services. They will also need specialist-level palliative and end of life care services to enable the system to provide personalised care to the child or young person and their family.
There are important differences between adults’ and children’s palliative and end of life needs, including at the transition between childhood and adulthood, which ICBs must take into account when commissioning and designing services.
ICBs should have a clear vision of how the package of services they commission locally deliver against the Ambitions Framework for children and young people. They should actively seek out commissioning resources to achieve this.
There must be sufficient workforce in place across all settings, with the knowledge to deliver the palliative and end of life care that children and young people need. Regard should be given to supporting general clinicians to build knowledge, skills and confidence to deliver high quality, personalised palliative and end of life care. They should be supported by specialist children and young people’s palliative and end of life care clinicians and services where appropriate.

To realise this duty, we recommend that ICB commissioners:

Use the NHS England-recommended ‘Ambitions for Palliative and End of Life Care self assessment’ to identify progress and gaps against the six Ambitions commitments. This should involve children, young people and families with lived experience of palliative and end of life care.
Develop and implement a children and young people’s palliative and end of life care service specification which aligns closely with the Children and Young People’s Palliative and End of Life Care National Service Specification.
Specify clearly what needs to be in place to deliver high quality end of life care for the children and young people they serve.
Ensure there is sufficient provision of service providers for children and young people’s palliative and end of life care. Consider access to specialist children and young people’s palliative and end of life care services, children’s hospice beds, community-based care, bereavement services, pharmacy services, equipment, spiritual care (as part of mental health and wellbeing support) and the availability of and access to information.
Ensure access to general paediatric medical and children’s nursing services, out of hours services and rapid response to maintain continuity of care, thereby supporting the child or young person and their family’s preferences and choice.
Develop a palliative and end of life care Equalities and Health Inequalities Impact Assessment (EHIA) and action plan that includes children, young people and their families.

NHSE aims to provide practical advice on implementing quality palliative and end of life care for the whole population in this handbook to accompany the statutory guidance. The handbook is available to users who have access to the Palliative and End of Life Care Network workspace FutureNHS platform.

For those who do not yet have access to the platform, please email england.palliativeandendoflife@nhs.net