Palliative Care

In late 2012, the network embarked on a project to enhance the care of babies with terminal and life-limiting conditions, building on some of the excellent work that was already taking place across our Units with the aim of learning and spreading best practice. This was initially focused on a comprehensive “Neonatal Comfort care Bundle” (NCCP) as a means of providing a practical tool to try and standardise and enhance this key aspect of neonatal care.

Under the leadership of Stacy Williams (Staff Nurse, UHNT & Network Project Lead), Dr Yifan Liang (Consultant Paediatrician, JCUH & Chair, North east Children’s Palliative Care Forum) & Dr Rob Tinnion (Consultant Neonatologist, JCUH), the NCCP was piloted over several months across the Network’s four NICUs. The valuable feedback gained during this time was then translated into a major revision of the approach and a new Network “Care Bundle” published in April 2015. This is intended to provide a tool for all Baby Units and other health care professionals involved in the pathways of care that babies with terminal or life-limiting conditions.

Printed as a hard copy binder available as a resource on all 11 Network of our Units, the files contained are also now listed and made available for download below, in the order and various sections they were published in. Please note these form the intellectual property of the Northern Neonatal Network and should not be further distributed for other purposes without the permission of the Network Manager.

File 1 – Care Bundle Foreword

File 2 – Care Bundle Flow Chart

File 3 – Care Bundle Overview

File 4 – Antenatal Congenital Abnormality MDT Form

File 5 – Care Bundle Checklist 1 (Acutely unwell baby, at risk of dying/in process of dying)

File 6 – Care Bundle Checklist 2 (Transfer Checklist – baby with life-limiting illness, not necessarily dying/baby for transfer to different setting; a more local hospital, paediatric ward, home, community, children’s hospice)

File 7 – Neonatal Comfort Care Plan (NCCP)

File 8 – After Death Checklist

File 9 – NCCP Extras (Death certification, donor guidelines, useful contact numbers)

File 10 – Neonatal Death Referral Form for Coroners

File 11  – Supplemental Information & Resources

File 12 – Regional DNA CPR Guidance

File 13 – Emergency Health Care Plan (EHCP) Form

File 14 – Neonatal Stratified Treatment Escalation Plan (nSTEP) Form

File 15 – A Guide to End of Life Care (Together For Short Lives publication)

File 16 – RCPCH Framework for Practice

File 17 – Decisions Relating to CPR (BMA/Resuscitation Council/RCN Publication)

File 18 – N East Palliative Care Helpline

File 19 – Useful Resources and contacts

File 20 – Guidelines for Health Professionals for Bereavement from a Twin/Multiple Pregnancy

THE BUTTERFLY PROJECT

An initiative that has gained significant attention and credit has been the “Butterfly Project” that arose out of a piece of research looking at twin and multiple loss at the RVI. This has seen neonatal units from around the world adopt the idea and a dedicated website has a wealth of resources for professionals and those involved with the care of the babies and families who experience such tragic losses. To find out more, just follow the link here.