Alex Mancini

National Lead Nurse in Neonatal Palliative Care

The Lead Nurse for Neonatal Palliative Care project aims to improve neonatal palliative care to ensure that babies and their families receive the best possible care at the most challenging time of their lives.

The project began in London in 2015 and is being rolled out across three new regions over the next three years.  An independent evaluation of the London project found that the Lead Nurse had contributed to improved equity, care and choice for families; and that although variation persists, in many cases, a cultural shift had taken place, resulting in new ways of working on neonatal units; and strengthened links between neonatal units and children’s hospice and paediatric palliative care services.

The Lead Nurse role aims to complement recommendations from the Neonatal Critical Care Review (2019) supporting ‘a seamless, responsive and multidisciplinary service’ for all babies, including those with an uncertain future or with palliative care needs and their families.

The next stage of this project will focus on three specific Neonatal Operational Delivery Networks (ODNs) to continue the development of neonatal palliative care and to embed it into routine care. The project will be robustly evaluated and its impact measured to encourage uptake by other ODNs in the future.

The Executive Summary of the evaluation of Phase 1 can be found here.

The full Evaluation of Phase 1 can be found here.

The Evidence Supplement can be found here.