Background Perinatal palliative care (PPC) is an evolving specialty committed to providing care for foetuses/babies with a life-limiting condition diagnosed in the antenatal/neonatal period, as well as supporting the parents and extended family. However, the number of referrals for hospice support was few and far between.
Aim(s) Increase awareness of hospice services amongst tertiary centres within Cheshire and Merseyside
Create consistency to families of a choice of place of care and death; hospital, hospice or home
Provide specialist palliative care through diagnosis, birth, child’s life, and death.
Methods Links have been developed in two neonatal units within the hospice catchment area. This included regular presence on ward rounds and education about hospice services, thus creating good collaborative working between hospital, hospice and families.
Results Since the initial development of links in 2014, referrals (aged 0–1 years) accepted for hospice care have increased by 216%. This has had a dramatic impact on all services offered by the hospice, including a 167% increase in neonatal referrals for 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.
Conclusion Clearly the children’s hospice has a definitive role within PPC. The presence of hospice staff within tertiary centres has enabled good palliative care planning with all relevant professionals of the multi-disciplinary team. Thus, providing seamless and compassionate support for families, with a choice of their preferred place of care. We aspire to develop stronger partnerships in the future, with the development of a jointly commissioned post (hospital/hospice) to lead PPC across Cheshire and Merseyside.
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