Neonatal palliative care is an evolving specialism, which embraces the wishes of the parents at the earliest opportunity, whilst 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 programme's 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. 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 NHS Foundation Trust where she identified a growing need for neonatal palliative care.
Neonatal care is coordinated at a regional level through NHS Neonatal Operational Delivery Networks, (ODNs). There are 13 Neonatal ODNs in the UK. The programme 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.
In 2024 the programme will be rolled out nationally to the UK’s remaining nine Neonatal ODNs. The programme has been jointly funded by Chelsea and Westminster Hospital NHS Foundation Trust, its charity CW+ and True Colours from the outset. 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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