TY - JOUR

T1 - Consultant-led UK paediatric palliative care services: professional configuration, services, funding

T2 - professional configuration, services, funding

AU - Bedendo, Andre

AU - Hinde, Sebastian

AU - Beresford, Bryony

AU - Papworth, Andrew

AU - Phillips, Bob

AU - Vasudevan, Chakrapani

AU - McLorie, Emma

AU - Walker, Gabriella

AU - Peat, George

AU - Weatherly, Helen

AU - Feltbower, Richard

AU - Hewitt, Catherine

AU - Haynes, Andrew

AU - Murtagh, Fliss

AU - Noyes, Jane

AU - Hackett, Julia

AU - Hain, Richard

AU - Oddie, Sam

AU - Subramanian, Gayathri

AU - Fraser, Lorna

N1 - © Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.

PY - 2024/4/30

Y1 - 2024/4/30

N2 - 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.

AB - 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.

U2 - 10.1136/spcare-2023-004172

DO - 10.1136/spcare-2023-004172

M3 - Article

C2 - 37558392

VL - 14

SP - e554-e557

JO - BMJ Supportive and Palliative Care

JF - BMJ Supportive and Palliative Care

SN - 2045-435X

IS - e1

ER -