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Supporting parents during trauma of baby loss

2022-01-13
Logo for the NI Paediatric Palliative Care Network

A new initiative to support parents whose unborn baby has a potentially life limiting or life threatening condition has been launched by Health Minister Robin Swann.

The first Antenatal Palliative Care Pathway will be rolled out across Northern Ireland’s five health and social care Trusts.

It aims to support parents who receive the devastating news that their unborn baby may die, ensure they receive high quality holistic care and provide advice and support on the type of care available to them.

The pathway, part of the regional strategy, Children’s Palliative and End-of-Life Care has been developed by the Paediatric Palliative Care Network, through a collaborative approach involving health professionals from Foetal Medicine, Neonatology, Obstetrics, Midwifery, Clinical Psychology, Paediatrics and Paediatric Palliative Care Leads, and the Northern Ireland Children’s Hospice.

Families affected by a palliative diagnosis were also consulted.

In supporting the launch of the pathway, Health Minister Robin Swann said: “Families who receive a heart breaking diagnosis that their unborn child may require palliative care need all the support and help that our health and social care services can provide.

“I am confident that this pathway will go a long way to improving the experiences of all those involved in  antenatal palliative care and ensure that parents and all those affected by the diagnosis, such as carers, siblings and grandparents,  are supported every  step of the way during  a difficult and traumatic time.”

Consultant Paediatrician with the Southern Trust, Dr David Graham and Bride Harkin,  Health and Social Care Board, are co-chairs of the Child Health Palliative Care Network.

Dr Graham said: “Sadly, some babies are lost during pregnancy, birth or shortly afterwards. This regional initiative is intended to personalise the antenatal planning period in a way that maintains hope, and plans for all possible outcomes.

Commenting on the role of the network Bride Harkin said: “Our responsibility is to make sure that paediatric palliative care services are equitable, of high quality, safe, sustainable, efficient and effective. This new pathway – a first for Northern Ireland – will ensure that we deliver real change for children with palliative care needs and their families.”

Valerie Peacock, Nurse Specialist with the Northern Ireland Children’s Hospice said: “One of the key aspects in the development of this new pathway was working very closely with parents and families who have sadly experienced the death of a baby. Their unique perspective helped to shape the pathway to ensure that they were supported and guided along every step of this incredibly difficult journey.”

As part of the launch health professionals  who provide care to expectant parents, including obstetricians, bereavement midwives, paediatricians and foetal medicine specialists, will receive a comprehensive package of training and support, including a user guide and education video.

The Paediatric Palliative Care Network brings together statutory and voluntary sector representatives from paediatric palliative care. Membership comprises the Northern Ireland Children’s Hospice, the Department of Health, Health and Social Care Board, Public Health Agency and all Health and Social Care Trusts.

This regional network, a subgroup within the Child Health Partnership, is working to deliver standards of care, improve communications with families and carers, undertake research and to develop care pathways. The achievement of the ambitious objectives set out in the NI Strategy for Children’s Palliative and End-of-Life Care 2016-2026 is central to its collaborative approach.

More information is available at: Regional Paediatric Palliative Care Network – HSCB (hscni.net)

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