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Consultant-led UK paediatric palliative care services: professional configuration, services, funding
  1. Andre Bedendo1,
  2. Sebastian Hinde2,
  3. Bryony Beresford3,
  4. Andrew Papworth4,
  5. Bob Phillips5,
  6. Chakrapani Vasudevan6,
  7. Emma McLorie7,
  8. Gabriella Walker8,
  9. George Peat7,
  10. Helen Weatherly2,
  11. Richard Feltbower9,
  12. Catherine Hewitt1,
  13. Andrew Haynes7,
  14. Fliss Murtagh10,
  15. Jane Noyes11,
  16. Julia Hackett7,
  17. Richard Hain12,13,
  18. Sam Oddie14,
  19. Gayathri Subramanian15 and
  20. Lorna Fraser16
  1. 1 Department of Health Sciences, University of York, York, UK
  2. 2 Centre for Health Economics, University of York, York, UK
  3. 3 Social Policy Research Unit, University of York, York, UK
  4. 4 School for Business and Society, University of York, York, UK
  5. 5 Centre for Reviews and Dissemination, University of York, York, UK
  6. 6 Bradford Teaching Hospitals NHS Foundation Trust, Bradford, UK
  7. 7 The Paediatric Palliative Care & Medical Complexities Group, Department of Health Sciences, University of York, York, UK
  8. 8 Parent Advisory Panel Member, York, UK
  9. 9 Leeds Institute for Data Analytics, University of Leeds, Leeds, UK
  10. 10 Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK
  11. 11 School of Medical and Health Sciences, Bangor University, Bangor, UK
  12. 12 All-Wales Paediatric Palliative Care Network, Cardiff and Vale University Health Board, Cardiff, UK
  13. 13 College of Human and Health Sciences, Swansea University, Swansea, UK
  14. 14 Bradford Hospitals National Health Service Trust, Bradford, UK
  15. 15 Manchester University National Health Service Foundation Trust, Manchester, UK
  16. 16 Cicely Saunders Institute and Dept of Women’s and Children’s Health, King’s College London, London, UK
  1. Correspondence to Dr Andre Bedendo, University of York, York YO10 5DD, UK; andre.bedendo{at}york.ac.uk

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.

  • paediatrics
  • supportive care
  • terminal care
  • service evaluation

https://doi.org/10.1136/spcare-2023-004172

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    Footnotes

    • Contributors LF and AB wrote the first draft of the manuscript. HW, SH and JH also contributed to manuscript writing. Statistical analysis: AB. Interpretation of findings: AB, SH, AP, BP, CV, GW, EM, GP, HW, RF, FM, JN, JH, RH, SO, GS and LF. Data collection and study management: BB, AP, AH, JH and LF. Planning and conceptualisation: BB, BP, GW, RF, CH, JN, RH and LF. Study supervision: LF and BB. All authors approved the submitted version of the manuscript.

    • Funding This study is funded by the NIHR Health service and Delivery Programme (NIHR129213). FM is a National Institute for Health and Care Research (NIHR) Senior Investigator.

    • Disclaimer The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; internally peer reviewed.