Clinical Commissioning Groups, hospices, patients, carers, and all staff who provide palliative care to children.
This short guide has been written for Clinical Commissioning Groups, hospices, patients, carers, and all staff who provide palliative care to children. Commissioners need to be aware that palliative care for children is very different to palliative care for adults, because it is often required over much longer periods of time and also needs to cater for disabilities which often accompany long-term conditions in children. It is not only end of life care, but specialist care throughout their lives. Therefore effective commissioning of children’s palliative care (CPC) involves the integration of health and social care, education and the whole family, as it involves all aspects of a child’s development and quality of life for them and their families.

Palliative care

This guide focuses on general healthcare as opposed to be specialised (CPC) which is commissioned by NHS England. It categorises children’s palliative care in four ways:

1. Life-threatening conditions
2. Conditions where children face early death, but are not ill all the the time
3. Conditions where children get gradually become more ill
4. Irreversible conditions requiring constant care

Actions

A major provider of CPC are voluntary organisations, such as hospices and so special agreements with regards to remuneration have to be made as they fall outside the NHS umbrella. This document lists the types of organisations that should support CPC, providing physical, emotional and psychological support. It is advised that Clinical Commissioning Groups take the following actions:

1. Build partnerships with local authorities
2. Analyse and plan with neighbouring CCGs
3. Design pathways so that they factor in all three stages: diagnosis, ongoing care, and end of life care
4. Specify and procure, ensuring that the service correlates with the specialist services commissioned by NHS England.
5. Deliver and improve by continually evaluating performance.

Cost effectiveness

The guide also describes how, when commissioned and delivered effectively, CPC can lead to more cost-effective provision of service delivery by reducing length-of-stay in acute settings by moving children to a more suitable environment.

Commentary

This guide outlines the complexities of delivering palliative care for children. More organisations are involved, and the service can be required throughout a child’s life. As commissioners, think about who you should be getting involved with. Having read this guide, see if you are in contact with all the organisations they describe, e.g. hospices, schools, community nursing teams, etc., so that you can make sure that children and their families are getting the seamless service that they need to ensure that they can have some stability and routine in their lives.

Link

Commissioning children’s palliative care: a guide for Clinical Commissioning Groups (PDF)
Together for Short Lives
August 2013

Supporting materials

Children and Young People’s Health Outcomes Forum Long-Term Conditions, Disability and Palliative Care Subgroup