National Neonatal Palliative Care Programme

This programme provides strategic training to healthcare professionals in neonatal units with the aim of ensuring families in the UK have consistent access to high–quality neonatal palliative care.

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 of the whole family.

It improves the experience and outcomes for families during a time of uncertainty – specifically, when a baby has multiple complex health needs with an unclear prognosis, or is not expected to survive.

According to research by the UK Neonatal Collaborative, there are an estimated 2,500 babies born each year in England and Wales who would benefit from a neonatal palliative care approach. This figure is likely to be an underestimation, as it only includes babies who are admitted to neonatal units.

The National Neonatal Palliative Care Programme has been jointly funded by The True Colours Trust, Chelsea and Westminster Hospital NHS Foundation Trust and CW+ since its inception in 2015. It is endorsed by the British Association of Perinatal Medicine (BAPM), Bliss, the Neonatal Nurses Association and Together For Short Lives.

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The origins and aims of the National Neonatal Palliative Care Programme

The programme 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 Hospital NHS Foundation Trust, where she identified a growing need for neonatal palliative care.

The programme began in 2015 as a pilot in London and, following the positive findings of an independent evaluation, was extended to three further Neonatal ODNs in England (South West, North West and Yorkshire & Humber) in 2021.

The programme’s overarching goal is to ensure equitable and consistent access to high-quality neonatal palliative care for babies, and enhanced support for their families.

When I was first talking about palliative care on neonatal units 20 years ago, many of my colleagues believed there was no such thing as neonatal palliative care; it was either death or survival. Thankfully, it is now considered essential to provide life-limited babies with end-of-life care, and to support their families during this devastating time

Alex Mancini

In the past 10 years, great strides have been made in delivering consistent, high-quality care to babies and their families, but there’s still much work to do. Neonatal Palliative Care is very much everyone’s business, and we will continue in our efforts to ensure that every baby and their family receives a consistent palliative care approach

Alex Mancini

Expanding neonatal palliative care training across the UK

Neonatal care is coordinated at a regional level through 10 Neonatal Operational Delivery Networks (ODNs) in England, and Neonatal Networks in Scotland, Northern Ireland and Wales. To achieve its aims, the programme provides training in neonatal palliative care to healthcare professionals across neonatal, maternity, community and paediatric palliative care specialties, rolling out over time to every Neonatal Network in the UK.

Now in its third and final phase, the programme is currently working with Kent Surrey & Sussex, Thames Valley & Wessex and Northern Neonatal ODNs, before being rolled out across the remaining Neonatal ODNs in England, plus Northern Ireland, Scotland and Wales, to ensure every region and nation has access to the training and support.

Highlights and achievements

A few highlights from the programme so far include:

Introductory training provided to more than 3,000 healthcare professionals in neonatal palliative care across seven Neonatal ODNs in England to date, (London; South West; North West; Yorkshire & Humber; Kent, Surrey & Sussex; Thames Valley & Wessex; and Northern Neonatal ODNs). These Neonatal ODNs support 116 neonatal units, plus seven neonatal transport services.
Enhanced learning provided through regular in-depth training sessions to more than 6,000+ attendees to date.
Development and delivery of five national networks spanning neonatal, palliative and bereavement care, facilitating peer support and opportunities to share good practice and encourage inter-professional learning. This includes chairing the Neonatal Nurses Association Palliative Care Special Interest Group and the National Specialist Palliative Care & Children’s Hospice Neonatal Special Interest Group.
A self-sustaining network of clinicians trained in neonatal palliative care across London’s 28 neonatal units and six hospices, which meets regularly for training and support; and new or reinvigorated Special Interest Groups in South West, North West and Thames Valley & Wessex Neonatal ODNs.
The inclusion of an e-learning training module on neonatal palliative care, based on the textbook ‘Neonatal Palliative Care for Nurses’, in the educational package of the International Children’s Palliative Care Network.

Further information

Phase 1 evaluation

BMJ article: Data-driven approach to understanding neonatal palliative care needs in England and Wales: a population-based study 2015–2020

ICPCN – Neonatal Palliative Care: An Introduction

Neonatal Palliative Care Alliance

Alex Mancini, National Lead Nurse in Neonatal Palliative Care, and James Porter, Director of Campaigns and Major Programmes at CW+, represent the Neonatal Palliative Care Programme as a member of the Neonatal Palliative Care Alliance.

Convened by The True Colours Trust, the Alliance is an informal network that brings together organisations and experts from across the sector. It was established in response to the growing national focus on maternity and neonatal care, and the absence of a dedicated national body for neonatal palliative care.

The Alliance works to improve understanding of neonatal palliative care across policy and the wider sector. It also provides a forum for collaboration, sharing expertise and collective engagement to advance key priorities.

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