Most child death happens in the first 28 days of life and, on average, 2,500 babies are born in the UK each year who would benefit from a palliative care approach. Neonatal palliative care provides physical, emotional, social and spiritual care, focussing on enhancement of the quality of life for the baby and support for the family.
Jointly funding with its partners, Chelsea and Westminster NHS Foundation Trust and its charity CW+, True Colours helped create the UK’s first National Lead Nurse in Neonatal Palliative Care post.
The post was taken by Alex Mancini, who was Matron on the Neonatal Intensive Care Unit at Chelsea and Westminster. Alex is still in situ, spearheading a national programme of training, education and mentorship.
The project began as a pilot in London in 2015, before being rolled out nationally in 2020. To date, over 2,500 people have been trained from 80 neonatal units and a freely available online module has been created. In London, there is now a self-sustaining network of clinicians who meet regularly to share best practice and undertake further training – a model which will be replicated nationally over the next five years.
This final phase will focus on sustainability, embedding training and peer support within local structures, and identifying revenue streams to continue work once project funding ends in 2029. Further work will also be done to improve the evidence base for neonatal palliative care to raise awareness and advocate for families.
The impact of good neonatal palliative care is transformational. It allows families to have the best possible experiences with their baby, however long their time together may be.