Neonatal Palliative Care Project
Neonatal palliative care is an evolving specialism, which embraces the wishes of the parents at the earliest opportunity, while focusing on the needs of the baby and enhancing the quality of life for the whole 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.
The Neonatal Palliative Care Project has been jointly funded by CW+, Chelsea and Westminster Hospital NHS Foundation Trust and The True Colours Trust. It is endorsed by the British Association of Perinatal Medicine(BAPM), Bliss, the Neonatal Nurses Association and Together For Short Lives.
The project is led, and was conceived, by Alex Mancini, the country’s first Lead Nurse in Neonatal Palliative Care. The vision came from her experiences as Matron on the Neonatal Intensive Care Unit at Chelsea and Westminster NHS Foundation Trust, where she identified a growing need for neonatal palliative care.
Its overarching goal is to ensure equitable and consistent access to high quality neonatal palliative care for babies and their families in the UK. To achieve this, strategic training in neonatal palliative care is being provided to staff in neonatal units and community specialist paediatric palliative care services across the UK.
‘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.’ – Alex Mancini
Neonatal care is coordinated at a regional level through NHS Neonatal Operational Delivery Networks (ODNs). There are 13 Neonatal ODNs in the UK. The project began in 2015 as a pilot in London, and following the positive findings of an independent evaluation, was extended to three further ODNs in England (South West, North West and Yorkshire & Humber) in 2021.
A few highlights from the project so far include:
- A self-sustaining network of clinicians trained in neonatal palliative care across London’s 28 neonatal units and 6 hospices, which meets regularly for training and support.
- An internationally accessible training module on neonatal palliative care included in the educational package of the International Children’s Palliative Care Network.
- The training of 2,568 people in neonatal palliative care at four Neonatal ODNs in England (London, South West, North West and Yorkshire & Humber) which support 80 neonatal units.
In 2024, the project is being rolled out nationally to the UK’s remaining nine Neonatal ODNs. This will be the third and final phase of the project. It will see a greater emphasis on sustainability, including the Training of Trainers within the Neonatal ODNs; identifying local/regional revenue streams for key strands of work; and establishing a biennial conference to showcase best practice and catalyse the creation of peer networks for ongoing support and development. The next phase of the project is also likely to include further data analysis to improve the evidence base for neonatal palliative care, raise awareness of the need and advocate for appropriate support for families.
National data shows that there is a growing population in need of neonatal palliative care. This project will ensure that there is a skilled, compassionate workforce capable of meeting the unique needs of these babies and their families and we are pleased to be working with our partners to support this innovative and crucial piece of work.
For further questions about this project, please contact Alex Mancini at firstname.lastname@example.org.