Baby loss charities urge NHS to improve ‘inconsistent’ bereavement care

Baby loss charities are urging the NHS to improve “inconsistent and under-resourced” bereavement care for parents whose babies die shortly after they are born.

A report by stillbirth and neonatal death charities Sands and Bliss, for babies born premature and sick, said most services lack sufficient specialist staffing input and appropriate facilities to support grieving families.

They said improvements to bereavement care are urgently needed as every week in the UK around 40 babies die during the neonatal period – from birth to 28 days old.

The care that bereaved families receive before, during and afterwards can have a critical impact upon their wellbeing in the months and years ahead, they added.

The joint Audit of Bereavement Care Provision in UK Neonatal Units found that despite instances of good practice by individual nurses and doctors, many services are not set up to deliver consistent high quality bereavement care.

Health professionals are also not getting the training and support they need to perform this vital role.

The report recommends steps that all NHS Trusts and Boards can take to improve, drawing from 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 pregnancy and baby loss.

The findings are revealed as the latest figures from the Office for National Statistics (ONS) show a rise in infant mortality that is driven by an increasing neonatal death rate.

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

Key findings of the audit include a wide variation in the quality of bereavement rooms, with more than 40% of the units having rooms situated where parents can hear other babies’ cries, which they said can be incredibly distressing.

It found bereavement care training is not available to staff in one in five units, while more than a quarter of units provide no emotional support for neonatal nurses, and more than a third have nothing similar in place for doctors.

Although the majority of neonatal units (83%) reported having a bereavement care lead, only one in 10 said that they had any dedicated time set aside to perform this role on the neonatal unit, and two-thirds of these staff had fewer than eight hours a week.

Clea Harmer, chief executive of Sands, said: “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.”

Sands trained more than 2,600 healthcare professionals during 2017/18 and offers a range of external workshops and in-house courses.

Bliss chief executive Caroline Lee-Davey 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.

“Sadly, however, there will always be babies who do not survive due to their prematurity or the conditions they are born with.”

Dr David Evans, consultant neonatologist and vice president for training and assessment at the Royal College of Paediatrics and Child Health (RCPCH), said: “As a doctor who works with very sick newborn babies, I see the ups and downs experienced by parents daily and sadly sometimes babies do not get better.

“Baby loss is heartbreaking 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.

“Today’s audit lays bare the gaps in bereavement support across neonatal units but crucially, it makes a series of recommendations that, if implemented, could transform care in these delicate and emotional days and weeks after loss.

“I fully support these recommendations and hope they are adopted soon so families and healthcare professionals see these important changes during their time of need.”