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.