Neonatal Palliative Care Project

CW+, Chelsea and Westminster Hospital NHS Foundation Trust and The True Colours Trust have launched 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.

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. The Lead Nurse role aims to complement recommendations from the Neonatal Critical Care Review (2019)[1] 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.

For further questions about this project please contact Alex Mancini at a.mancini@nhs.net

“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

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 at the Trust, and supports scaling these initiatives to deliver improved patient care and experience across the NHS.

Palliative care is crucial to babies and their families, as it:

  • Opens up discussions on the best individual care pathway for a baby who meets the criteria for palliative care
  • Directly prioritises the baby’s needs and the family’s needs
  • Provides a multi-disciplinary approach, supporting the whole family through a variety of services
  • Supports and enables choice for families, facilitating advance care plans and improving continuous bereavement care and support after the baby has died
  • Provides staff with the training and knowledge in recognising and identifying babies who meet the criteria, to have those difficult and sensitive conversations with families, to think of and suggest additional supportive specialist services such as hospice care, sibling support, and support within the home setting

In response to the COVID-19 pandemic, the Lead Nurse for Neonatal Palliative Care Project has rapidly evolved with the introduction of new technologies to enable Alex to provide virtual training and mentorship sessions to neonatal and children’s palliative care colleagues, facilitate a weekly virtual peer support group for neonatal nurses in London, and adapt the multi-disciplinary training programme for digital learning.

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.

The national roll-out coincides with the publication of an independent evaluation of the Lead Nurse for Neonatal Palliative Care Project in London:

This project is endorsed by the Neonatal Nurses Association.

[1] Implementing the Recommendations of the Neonatal Critical Care Transformation Review, NHS England and NHS Improvement