Neonatal palliative care is designed to meet the needs of babies who are born with multiple complex health needs and an uncertain future. It focuses on the needs of the baby and on enhancing the quality of life for the whole family, however long their time together may be. In England and Wales there are an estimated 2,500+ babies born every year who would benefit from palliative care and this number is expected to rise due to advances in technology and medicine.
In 2015, we set out to support the development and delivery of neonatal palliative care when the specialism was first emerging. At the time there were pockets of exceptional practice, but that coverage was not universal, and we were keen to ensure equity of access for babies and families. Through training and mentorship, this Programme is working to build a movement of passionate, skilled healthcare providers who feel confident and supported as they deliver high quality care for babies and families.
“We only have the choices you give us.”
Nadia Leake, parent
The progress made to date can be summarised by Alex Mancini, the Lead Nurse for the Neonatal Palliative Care Programme:
“When I was first talking about palliative care on neonatal units 20 years ago, many of my colleagues believed that palliative care on the neonatal unit didn't exist; it was either death or survival, without consideration to the period of uncertainty in between for many families. This attitude has shifted over time, with a consistent neonatal palliative care approach now considered essential in all instances where uncertainty exists regarding a baby's future".
Alex Mancini had identified a growing need for neonatal palliative care amongst the babies she worked with at Chelsea and Westminster Hospital NHS Foundation Trust, where she worked for many years as Matron on the Neonatal Intensive Care Unit. Her compelling vision for how to support this population of babies with multiple complex health needs across the country led to the development of the Neonatal Palliative Care Programme, with Alex appointed as the UK’s first Lead Nurse in Neonatal Palliative Care.
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