Consultant-led UK paediatric palliative care services: professional configuration, services, funding

Andre Bedendo*, Sebastian Hinde, Bryony Beresford, Andrew Papworth, Bob Phillips, Chakrapani Vasudevan, Emma McLorie, Gabriella Walker, George Peat, Helen Weatherly, Richard Feltbower, Catherine Hewitt, Andrew Haynes, Fliss Murtagh, Jane Noyes, Julia Hackett, Richard Hain, Sam Oddie, Gayathri Subramanian, Lorna Fraser

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

OBJECTIVES: To systematically gather information on the professional team members, services provided, funding sources and population served for all consultant-led specialised paediatric palliative care (SPPC) teams in the UK.

METHODS: Two-part online survey.

RESULTS: Survey 1: All 17 medical leads from hospital-based or hospice-based SPPC teams responded to the survey (100% response rate).Only six services met the NICE guidance for minimum SPPC team.All services reported providing symptom management, specialist nursing care, end-of-life planning and care, and supporting discharges and transfers to home or hospice for the child's final days-hours. Most services also provided care coordination (n=14), bereavement support (n=13), clinical psychology (n=10) and social work-welfare support (n=9). Thirteen had one or more posts partially or fully funded by a charity.Survey 2: Nine finance leads provided detailed resource/funding information, finding a range of statutory and charity funding sources. Only one of the National Health Service (NHS)-based services fully funded by the NHS.

CONCLUSIONS: One-third of services met the minimum criteria of professional team as defined by NICE. Most services relied on charity funding to fund part or all of one professional post and only one NHS-based service received all its funding directly from the NHS.

Original languageEnglish
JournalBMJ Supportive & Palliative Care
Early online date9 Aug 2023
DOIs
Publication statusE-pub ahead of print - 9 Aug 2023

Bibliographical note

© Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.

Cite this