In partnership with Chelsea and Westminster Hospital NHS Foundation Trust and The True Colours Trust, CW+ hosted the inaugural National Neonatal Palliative Care Programme Conference on 12 March. Held at Chelsea Football Club, the event provided a fantastic opportunity to showcase the significant progress made in neonatal palliative care across the UK, as well as bringing together professionals in the sector.
10 years of the National Neonatal Palliative Care Programme
The conference also marked a special milestone – celebrating 10 years of the National Neonatal Palliative Care Programme. The programme, jointly funded by the True Colours Trust, CW+ and Chelsea and Westminster Hospital NHS Foundation Trust, has been working to improve the quality of care for families when a baby is not expected to survive, or when a baby has multiple complex health needs with an uncertain future.
Under the leadership of Alex Mancini, the programme’s Lead Nurse, and with the support of neonatal Operational Delivery Networks (ODNs), hospital trusts, specialist palliative care teams, children’s hospices and clinical teams, the programme is dedicated to embedding a consistent approach to neonatal palliative care by enhancing knowledge, skills and confidence for healthcare teams.
Celebrating success and sharing expertise
The successful conference was attended by 150 people in person and 362 online, with participants spanning the breadth of the UK, from Cornwall to Scotland. It highlighted the programme’s achievements while offering a platform to discuss frameworks for providing palliative care, share lessons from the National Neonatal Palliative Care Programme, and explore different care models used across the UK. Key topics included the importance of family-centred care, bereavement support, and building a skilled neonatal palliative care workforce. Attendees had the opportunity to connect, collaborate and learn from experts in the field, gaining insights into how to provide the highest quality of care for every baby and their family.Â
In addition, the conference addressed training for neonatal care teams, highlighting the role of specialist nurses supporting both babies and families and the workforce. Discussions covered planning care for extremely premature babies, and ensuring families have choices in care decisions. The event wrapped up with talks on creating national standards and tools to support better communication and care in neonatal palliative services.
Providing the best possible care across the neonatal care sector
Alex Mancini, who opened the event, said: ‘We must continue to connect and collaborate across specialties, ensuring we have robust data underpinning neonatal palliative care, while ensuring ALL babies and their families have access to this enhanced support, ALL of the time, EVERYWHERE. Together we must operationalise and formalise neonatal palliative care approaches while developing robust infrastructures for sustainability in the future.’
James Porter, Director of Campaigns and Major Programmes at CW+, said: ‘We are proud to have hosted this thought-provoking conference and to celebrate the important work of this innovative programme. Along with our partners, we are committed to fostering collaboration on a national scale, aiming to support as many families, babies and professionals as possible. Together, we hope to ensure healthcare teams are better equipped to provide compassionate patient- and family-centred care across the neonatal care sector.’
Lucy Sainsbury, Founder and Chair of the True Colours Trust, said: ‘It was wonderful to join our partners in hosting this inaugural conference. We were thrilled to be able to celebrate the progress in neonatal palliative care over the last 10 years. We remain committed to seeing this work embedded into all neonatal services so that every family can access the highest quality of care and be given every choice available to them. This work is invaluable, and the programme itself continues to highlight the impact of innovation, partnership and creative thinking in bringing about lasting change in health systems.’
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