Innovative Neonatal Palliative Care Project goes national

In partnership with Chelsea and Westminster Hospital NHS Foundation Trust and the True Colours Trust, we are launching the national roll-out of our pioneering regional Lead Nurse for Neonatal Palliative Care Project after a successful five-year London pilot. The work will continue to be spearheaded by Alex Mancini, who will become the country’s first National Lead Nurse in Neonatal Palliative Care.

Neonatal palliative care is an emerging specialism, which emphasises the comfort of the baby and quality of life for the family, however long their time together may be. It improves the experience and outcomes for families during a time of crisis, specifically when their baby is not expected to survive, or when a baby has multiple complex health needs with an uncertain future.

Alex Mancini notes: “When I was first talking about palliative care on neonatal units about 15 to 20 years ago, many of my colleagues said there’s no such thing as neonatal palliative care, there’s either death or there’s survival. Thankfully, neonatal palliative care is now recognised as essential in supporting babies with life limiting conditions, end of life care and supporting his or her family during this devastating time.”

The Lead Nurse for Neonatal Palliative Care Project is part of the CW Innovation programme – jointly led by the Trust and CW+ – which facilitates the development of innovative models of care within the Trust, and then supports the national roll-out at scale to deliver improved patient care and experience. The success of the project and its digital transformation during the pandemic will greatly strengthen the national roll-out, enabling Alex Mancini’s work in London to be easily replicated in other neonatal Operational Delivery Networks across the UK to train and develop the neonatal workforce in this unique field.

Lucy Sainsbury, Chair of Trustees at the True Colours Trust explains: “The national roll-out of this project realises a long-held dream we share with Alex Mancini to ensure high quality and equitable access to neonatal palliative care across the country. We hope this project will ensure that any baby that needs neonatal palliative care can receive the best possible care and that neonatal staff are supported to help families at an incredibly difficult time. We are very proud to be working with Alex Mancini, Chelsea and Westminster Hospital NHS Foundation Trust and CW+ on this critical project which we hope will transform the neonatal palliative care landscape.”

The news of the national roll-out coincides with the publication of an independent evaluation of the Lead Nurse for Neonatal Palliative Care Project in London, which can be read in full here, along with more information about the project.

Watch the video below to hear Alex discuss how the project will help babies and families across the UK, and how the COVID-19 pandemic has impacted her work: