Rainbow Trust has been providing emotional and practical support for families with terminally ill children since 1986. However, following publication of a report by the University of Leeds in 2011, we have identified an area in which there is currently little or no support for families, and aim to introduce our new neonatal palliative care service to provide specialist support for families with very sick new born babies.
Neonatal units in hospitals specialise in the care of babies born early, with low weight or who have a medical condition that requires specialised treatment. Most babies are, and remain, healthy and receive routine care at their mother's bedside before going home with their family. However approximately 10% of babies require some form of specialist support at birth, with 1-3% requiring neonatal intensive care. At present there is little or no support for families with babies in a Neonatal unit.
Rainbow Trust secured funding for our first specialist neonatal Family Support Worker and launched our pilot scheme at Chelsea and Westminster Hospital. Chelsea and Westminster is at the forefront of neonatal palliative care and we are working closely with Alex Mancini, the UK's first neonatal nurse, based at Chelsea and Westminster, on this project.
A recent report identified 2,205 babies in England in need of palliative care services, 85% of whom came from areas in which Rainbow Trust already operates. At Chelsea and Westminster Hospital, around 10% of deliveries are admitted to their Neonatal Intensive Care Unit (NICU), totalling up to 600 each year. Despite the fact that the majority of premature babies are likely to need long-term medical care, there is very little or no practical or emotional support for parents of babies on the unit