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Neonatal palliative care – an emerging specialism

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Mum and baby For some families, palliative care may be needed for a very short period of time – days or even hours – or for many years, often beginning in the neonatal period

Neonatal palliative care is a broad concept, 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.

An emerging specialism, neonatal palliative care emphasises a collaborative vision, where the needs of the family are understood by their treating team and supported across departments and organisations within the community. For some families, palliative care may be needed for a very short period of time – days or even hours – or for many years, often beginning in the neonatal period.

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In 2015, I started a unique project at Chelsea and Westminster Hospital NHS Foundation Trust, in partnership with its charity CW+ and the True Colours Trust, to improve neonatal palliative care services and ensure that babies and families receive the best possible care at the most challenging of times. The 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.

After a five-year pilot, I am proud that our work is now rolling out across the UK, focusing initially on three specific neonatal Operational Delivery Networks to continue the development of neonatal palliative care and to embed it into routine care. My work aims to prioritise the needs of babies and families, facilitating advance care plans, planning ahead and improving continuous bereavement support after the baby has died for the whole family.

By equipping staff with the training and knowledge in identifying babies who may meet the criteria for neonatal palliative care, we enable them to have those complicated and sensitive conversations with families, to think of and suggest additional specialist services such as palliative and hospice care, sibling support, and support within the home setting. In response to the COVID-19 pandemic, it has become essential for training to be accessible for nurses, midwives, doctors and allied health professional staff across the country. My training sessions quickly moved online, and I have been pleased to see people from different organisations and professional groups join in the conversation and share their experiences.

When I first started talking to colleagues on neonatal units about palliative care 20 years ago, many said there’s no such thing as neonatal palliative care, there’s either death or survival. Thankfully, neonatal palliative care is now recognised as essential in supporting babies with life-limiting conditions, end of life care and supporting their families during this devastating time. With this national project and our newly digitised way of learning, I hope that we can empower staff to provide families with the best possible care and encourage a mindset of openness around these difficult discussions.

Alex Mancini-Smith, National Lead Nurse for Neonatal Palliative Care

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