THE DEVELOPMENT OF A CHILDREN'S HOSPICE PERINATAL SERVICE TO IMPROVE PERINATAL PALLIATIVE CARE - 10 YEARS ON

THE DEVELOPMENT OF A CHILDREN'S HOSPICE PERINATAL SERVICE TO IMPROVE PERINATAL PALLIATIVE CARE - 10 YEARS ON

Williams K

Archives of Disease in Childhood

2024

hospice; palliative therapy; aged; awareness; bereavement; catchment area; child; conference abstract; diagnosis; extended family; hospice care; human; multidisciplinary team; newborn period; patient referral; positive feedback; trisomy 18

Objectives Perinatal palliative care is an evolving specialty committed to providing care for fetuses and babies with a life limiting condition diagnosed in the antenatal or neonatal period. It also includes supporting the parents and extended family. Initially, referrals for hospice support were few and far between; some years we received no perinatal referrals whatsoever. When beginning this work around a decade ago, our aims were to: Increase awareness of hospice services amongst tertiary centres across Cheshire and Merseyside. Consistently offer choice in place of care and death for families; hospital, hospice or home. Provide specialist palliative care through diagnosis, birth, child's life, and death. Methods Links have been developed in foetal medicine and neonatal units across the hospice catchment area. This included regular presence at foetal medicine clinics, neonatal ward rounds and education about hospice services. This created good collaborative working between hospital, hospice and families. This did not happen overnight and took perseverance and consistency. Results Since the initial development of links in 2013, referrals (aged 0-1 years) accepted for hospice care increased from 0-4 per year to over 150. This has impacted on all services offered by the hospice, including a huge increase in neonatal referrals for the use of the bereavement suite. The value of hospice services has been clearly acknowledged by tertiary centres, along with very positive feedback direct from families. 'We miss Emmalyn every day but we are so thankful that Claire House helped us create such happy memories that we can cherish forever'. Victoria, mum of Emmalyn who was diagnosed with Trisomy 18 and lived for 26 days. This service was run as a jointly funded pilot project between the (then) Liverpool CCG and Claire House. The pilot project ran for an initial two year period and, following detailed evaluation, was then commissioned by Liverpool CCG. After discussion and presentation of evidence, St Helens Place also commissioned this service. The commissioning of the service has enabled significant expansion of the perinatal offer. Conclusion Clearly the children's hospice has a definitive role within perinatal palliative care. The presence of hospice staff within tertiary centres has enabled good palliative parallel care planning with all relevant professionals of the multi-disciplinary team. This has resulted in seamless and compassionate support for families, with a consistent choice in preferred place of care. We aim to explore additional funding to continue to strengthen our service offer.

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