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  • Andre Bedendo
    York University, Toronto
  • Sebastian Hinde
    York University, Toronto
  • Bryony Beresford
    York University, Toronto
  • Andrew Papworth
    York University, Toronto
  • Bob Phillips
    York University, Toronto
  • Chakrapani Vasudevan
    Bradford Teaching Hospitals NHS Foundation Trust
  • Emma McLorie
    The Paediatric Palliative Care & Medical Complexities GroupOxford Brookes UniversityYork University, Toronto
  • Gabriella Walker
    Parent Advisory Panel Member
  • George Peat
    York University, Toronto
  • Helen Weatherly
    York University, Toronto
  • Richard Feltbower
    Leeds Beckett University
  • Catherine Hewitt
    York University, Toronto
  • Andrew Haynes
    York University, Toronto
  • Fliss Murtagh
    Hull University
  • Jane Noyes
  • Julia Hackett
    York University, Toronto
  • Richard Hain
    All-Wales Paediatric Palliative Care NetworkCardiff and Vale University Health BoardCollege of Human and Health SciencesSwansea University Medical School
  • Sam Oddie
    Bradford Hospitals National Health Service Trust
  • Gayathri Subramanian
    Manchester University National Health Service Foundation Trust
  • Lorna Fraser
    Institute of Psychiatry and Psychology, King's College London
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 and Palliative Care
Early online date9 Aug 2023
DOIs
Publication statusE-pub ahead of print - 9 Aug 2023

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