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Commissioning children's palliative care in England: 2017 edition

This report describes what clinical commissioning groups (CCGs) and local authorities are claiming they do to plan, fund and monitor (a process known as ‘commissioning’) care for the 40,000 children with life-limiting and life-threatening conditions in England.

Without an England-wide record of what is being funded, and where, it is difficult to understand how well children's palliative care services are being supported. This is vital, as the number of children and families who depend on these services is growing. Our ambition is to use this information to help improve the commissioning process, to highlight gaps and start to identify where it is working well so others can learn how to improve commissioning.

This report doesn’t identify how much funding is provided by each CCG or local authority to services, nor the quality of service that funding supports. The data in this report provides one element to help with our goal to overcome a postcode lottery of provision across England, so that services are adequately funded and children and families receive the support they need. This report precedes Together for Short Lives' and Hospice UK's report on commissioning and funding of voluntary sector providers of palliative care (including hospices) across England. This report, which will be published on the Together for Short Lives website soon, will explore trends in the statutory funding that children’s hospices receive.

During 2017, Together for Short Lives has issued freedom of information (FOI) requests to every CCG and upper-tier local authority in England, asking how they plan care and support for children who need palliative care and their families, and finding out which services they commission for them. This includes services such as children’s hospices, short breaks, community children’s nursing (CCN) and bereavement care. This is the second time that we have undertaken this research, having conducted a similar exercise in 2016.

When we issued our FOI requests, we included definitions of life-limiting conditions, life-threatening conditions and children’s palliative care to make sure that all CCGs and local authorities understood the purpose of our request. For CCGs, we also included definitions of step-down care and end of life care as we asked them questions specific to these terms.

We issued our FOI requests in June 2017 and followed-up with all CCGs and local authorities which did not respond or where any answers they provided were unclear. In total, 199 (94%) CCGs and 126 (83%) local authorities provided some or all the answers to our questions. We offer to continue to work with those CCGs and local authorities which have not yet responded to our FOIs to help them to do so.

We will update our CCG and local authority tables monthly as we receive more data. The results we publish here consider the answers we received before midnight on Monday 9 October 2017, therefore the results in our table may differ from those reported here.

We want to support CCGs and local authorities so that they better understand what they are responsible for commissioning, especially in relation to the government's End of Life Care Commitments. We have produced guidance to help with this process and encourage CCGs and local authorities to refer to the NICE guideline on ‘End of life care for infants, children and young people with life-limiting conditions: planning and management.'