Background Although the North East, North Cumbria region has an active paediatric palliative care network, until recently the region lacked a dedicated palliative care service covering all localities and settings.
Supporting choice in place of death is a core principle of palliative care (National Institute for Health and Care Excellence. End of life care for infants, children and young people, Guidance NG61, 2016, rev. 2019; National Palliative and End of Life Partnership, 2021; Siden, Miller, Straatman, et al., 2008; Wolff, Robert, Sommerer, et al., 2010), however, data for the region demonstrated that very few children with non-malignant conditions received end of life care at home (Gibson-Smith , Jarvis, Fraser, online first 2020). In 2021 a new regional children’s palliative care service was launched, funded by specialist commissioning. We report on the early impact of the service relating to place of death.
Aims and Methods The service aims to improve families’ experience by providing choice in place of death through:
Assisting local paediatric teams with advice and practical help.
Supporting families with visits and telephone contact.
Facilitating decision-making and advance care planning.
Robust evaluation has been built into the service from the outset including collection of family and professional feedback.
Results In the first six months of the project, the service received over 50 referrals. The palliative care team supported 11 children with end-of-life care and 100% died in their preferred setting. Six children received end-of-life care at home and the team facilitated five rapid transfers. Feedback from professionals and families highlighted the impact of the new service on enabling end-of-life care in community settings. The service supported children from every part of the region working alongside teams from all the four hospices and many children’s clinical teams in the region. Locality debriefs following a child’s death consolidated learning and continue to build relationships with local partners.
Conclusion We present evidence that the new children’s palliative care service has successfully enabled children to receive consistent end-of-life care across all settings in the region, thus facilitating greater choice for families.
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