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Improve NHS bereavement care for new parents, government urged

Current provision is ‘worryingly’ inconsistent and poorly resourced, audit finds

Caroline White

Tuesday, 11 December 2018

NHS bereavement care for parents whose baby dies shortly after they are born is worryingly inconsistent and under-resourced, concludes a joint report* published by the charities Bliss and Sands.

Most services lack sufficient specialist staff and appropriate facilities to support grieving families, the report shows.

And despite instances of good practice by individual nurses and doctors across the country, many services are not set up to deliver consistent high quality bereavement care and health professionals are not getting the training and support they need to perform this vital role, it says.

Between May-July 2018, survey responses were received from 100 neonatal units across the UK relating to the provision of bereavement care after the death of a baby. These focused on five key elements of the service: role of bereavement leads; bereavement care training; dedicated bereavement room and facilities; bereavement care literature and language translation; and post mortem consent.

The audit found that just 12% of units have mandatory bereavement care training, but nearly one in four (23%) have not received specialist training in bereavement care specific to the death of a baby.

While most (83%) of units have access to at least one specialist bereavement lead, the way in which they operate varies dramatically in terms of roles and dedicated work hours.

And only 14% of leads have dedicated time in their work plan to provide support on the unit: two-thirds have less than eight hours a week.

And only around half (57%) of bereavement rooms are located away from the sound of other babies.

All NHS trusts and boards can remedy this, by drawing on the National Bereavement Care Pathway (NBCP), a partnership between government, charities, and the NHS that sets out the standards for providing excellent care to anyone affected by stillbirth or the loss of their baby, recommends the report.

Every week in the UK around 40 babies die shortly after birth. The care that bereaved families receive before, during and after the death can have a critical impact on their wellbeing in the months and years ahead, it says.

While in recent years stillbirths have begun to fall, neonatal deaths have not, highlighting the significant challenge of meeting the government’s target of cutting perinatal deaths by 20% by 2020 and by 50% by 2025.

Caroline Lee-Davey, chief executive of Bliss, said: “Of the 100,000 babies admitted to neonatal units across the UK each year, sadly, some will never make it home. In light of neonatal death rates starting to rise again, the government in England must redouble its efforts to reduce these tragic deaths in order to achieve its ambition to halve stillbirths and neonatal deaths by 2025; and that counterparts in the devolved nations do the same.”

She added: “It is vitally important that governments and NHS leaders across the UK take urgent action to ensure bereavement care in neonatal units is better resourced, and that staff are better supported to deliver high quality care to parents. It is unacceptable that so many nurses and doctors do not have the bereavement care training or emotional support they need to be able to best support parents who have suffered the devastating loss of their baby.”

Clea Harmer, chief executive of Sands, commented: “While nothing can reduce the pain and suffering that the death of a baby causes, high quality bereavement care can help families cope with the devastating experience. Insensitive care can cause increased levels of suffering that can stay with families for a lifetime.

“This joint audit by Sands and Bliss has found much good work being done, for example, almost all neonatal units said parents could access the cold or cuddle cots that allow parents to spend more time with their baby. But there remain worrying inconsistencies across the country and an urgent need for improved bereavement care in neonatal settings.”

Dr David Evans, consultant neonatologist and vice president for training and assessment at the Royal College of Paediatrics and Child Health, commented: “As a doctor who works with very sick new-born babies, I see the ups and downs experienced by parents daily and sadly sometimes babies do not get better. Baby loss is heart-breaking for all involved, including the healthcare professionals who provide the neonatal care. We mustn’t forget that they are human too and require some level of emotional support.”

*Audit of Bereavement Care Provision in UK Neonatal Units (2018). A joint report prepared by Sands, the Stillbirth & neonatal death charity, and Bliss, the charity for babies born premature or sick. December 2018.

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