Background Community case palliative and end-of-life care for children and young people (CYP) under the care of a children’s hospice in England is provided locally by both statutory and voluntary services using ad hoc funding. NICE guidelines (National Institute for Health and Care Excellence. End of life care for infants, children and young people with life-limiting conditions: planning and management. [NG61], 2019) state that children and young people should have access to face-to-face nursing provision 24/7. However, these services are currently not equitable across the hospice catchment area, which includes three integrated care boards (ICBs).
Aims Funded by Hospice UK, our aim is to scope existing services within one ICB area to demonstrate need, understand gaps, and develop equitable models of care.
Method Data were collected from January 2021 to March 2023 (26 months) examining the number of: (1) children with symptom and end-of-life needs managed at home, and (2) nights the hospice community team were actively on call. Current end-of-life service provision by three children’s community nursing (CCN) teams within the ICB was collated.
Results The community team were on call for 14 children (10 for end-of-life support and 4 for symptom management support) and provided a total of 128 active nights on call alongside a silent rota. All CCN teams have different staffing levels and service provisions ranging from 5 to 7 days/week, with some teams flexing according to commissioning and some on goodwill. Developing and delivering equitable service models is complex. A stepped approach to implementation will be necessary and initially, two bespoke models tailored to the needs of each service have been developed: figure 1.
Conclusions The hospice community team delivers a high volume of care, however, inequitable CCN service provision across the hospice catchment impedes compliance with NICE guidelines. Wide variation in service provision necessitates a stepped approach and two distinct service models. Next steps will be to pilot the models and formalise service delivery/governance to demonstrate sustainability and robust funding need. Pilot implementation and evaluation commencing Autumn 2023.
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