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

doi:10.1136/spcare-2023-004172

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

Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation

Research output: Contribution to journal › Article › peer-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 language	English
Article number	spcare-2023-004172
Journal	BMJ Supportive and Palliative Care
DOIs	https://doi.org/10.1136/spcare-2023-004172
Publication status	Accepted/In press - 2023

Keywords

paediatrics
service evaluation
supportive care
terminal care

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10.1136/spcare-2023-004172

Cite this

Bedendo, A., Hinde, S., Beresford, B., Papworth, A., Phillips, B., Vasudevan, C., McLorie, E., Walker, G., Peat, G., Weatherly, H., Feltbower, R., Hewitt, C., Haynes, A., Murtagh, F., Noyes, J., Hackett, J., Hain, R., Oddie, S., Subramanian, G., & Fraser, L. (Accepted/In press). Consultant-led UK paediatric palliative care services: Professional configuration, services, funding. BMJ Supportive and Palliative Care, Article spcare-2023-004172. https://doi.org/10.1136/spcare-2023-004172

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title = "Consultant-led UK paediatric palliative care services: Professional configuration, services, funding",

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.",

keywords = "paediatrics, service evaluation, supportive care, terminal care",

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

note = "Funding Information: Eight (47%) teams had at least one post fully funded, and 13 (77%) at least one post funded partially or fully by a charity (multiple responses allowed). Four (23%) services reported no posts were funded by the charity sector. Funding Information: 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. Publisher Copyright: {\textcopyright} Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.",

year = "2023",

doi = "10.1136/spcare-2023-004172",

language = "English",

journal = "BMJ Supportive and Palliative Care",

issn = "2045-435X",

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Bedendo, A, Hinde, S, Beresford, B, Papworth, A, Phillips, B, Vasudevan, C, McLorie, E, Walker, G, Peat, G, Weatherly, H, Feltbower, R, Hewitt, C, Haynes, A, Murtagh, F, Noyes, J, Hackett, J, Hain, R, Oddie, S, Subramanian, G & Fraser, L 2023, 'Consultant-led UK paediatric palliative care services: Professional configuration, services, funding', BMJ Supportive and Palliative Care. https://doi.org/10.1136/spcare-2023-004172

TY - JOUR

T1 - Consultant-led UK paediatric palliative care services

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 - Funding Information: Eight (47%) teams had at least one post fully funded, and 13 (77%) at least one post funded partially or fully by a charity (multiple responses allowed). Four (23%) services reported no posts were funded by the charity sector. Funding Information: 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. Publisher Copyright: © Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.

PY - 2023

Y1 - 2023

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.

KW - paediatrics

KW - service evaluation

KW - supportive care

KW - terminal care

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U2 - 10.1136/spcare-2023-004172

DO - 10.1136/spcare-2023-004172

M3 - Article

C2 - 37558392

AN - SCOPUS:85168290356

SN - 2045-435X

JO - BMJ Supportive and Palliative Care

JF - BMJ Supportive and Palliative Care

M1 - spcare-2023-004172

ER -

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

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Keywords

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