NHS trusts urged to help end ‘postcode lottery’ for parents grieving baby loss

A bereavement support scheme is being rolled out nationwide in a bid to end a 'postcode lottery’ for baby-loss bereavement care of care for parents grieving baby loss.

The National Bereavement Care Pathway aims to ensure every parent grieving the death or stillbirth of their baby receives emotional support from doctors, midwives, and health workers, as well as clinical care.

After a successful pilot, NHS trusts and health boards are being urged to adopt the Pathway scheme. Trialled with positive feedback across a number of NHS hospitals and maternity units during 2017 and 2018, it provides a blueprint for supporting parents coping with the trauma of their baby’s death.

The coalition of bereavement charities behind the Pathway say that emotional support offered to grieving parents after their baby’s delivery has been “worryingly inconsistent” for many years. They also aim to pave the way for a dedicated bereavement room for all maternity units, where grieving parents can be looked after and have the opportunity to spend time with their baby.

‘Rooted in kindness’ – bereavement support

According to campaigners, fewer than half the UK’s maternity units currently provide mandatory bereavement care training to staff, while one in three health trusts and boards’ units have no dedicated bereavement rooms.

Dr Clea Harmer, chief executive of stillbirth and neonatal death charity Sands.UK, said that while even empathetic bereavement care could not diminish the agony of a loss, it could prevent additional pain endured by parents leaving hospital without their baby.

She said: “Good bereavement care is rooted in simple acts of kindness and respect, giving a family whose world has fallen apart the time they need with their baby, and minimising anything that could add to their suffering. It cannot remove parents’ pain and grief, but it can help them through this devastating time. In contrast, poor care can significantly add to a family’s distress.”

To show how supportive care can make a difference in deeply distressing circumstances, Sands has been inviting people to share experiences of baby-loss and how compassionate support helped them cope with it.

“There is no pain like walking away from the hospital with empty arms,” wrote a parent whose baby boy was stillborn. “But the small touches that were provided to us by the nursing team made the worst day of our life that little bit easier.”

It’s hoped that the National Bereavement Pathway will be adopted by NHS trusts to transform bereavement care for thousands of families in England every year, with the Scottish government having pledged funding and support to introduce the grief-care scheme in Scotland.

A blueprint for universal care

Developed with input from baby loss charities, professional healthcare bodies including the Royal College of Midwives and parents who have endured a miscarriage or stillbirth – with the support of the All-Parliamentary Group on Baby Loss – the Pathway’s aim is to ensure every parent receives the support they need from healthcare providers, mindful of the overwhelming and heartbreaking circumstances.

Sands, which recently launched a pioneering app supporting parents after baby loss, has said that bereavement care can be a postcode lottery for grieving families, depending on how hospitals and their staff are trained and equipped to respond to baby loss and miscarriage. It also says that levels of support can vary, according to the gestational stage of the baby who has died.

After an initial 11 NHS trusts in England trialled the Pathway in 2017, three quarters of healthcare professionals said that bereavement care had improved in their trust during that time. A further 22 have begun trialling the Pathway this year.

Baby Loss Awareness Week

The programme is now being rolled out across England with the hope that many more will adopt it as a best-practice model. The move comes as grief support charities and bereaved parents mark the start of Baby Loss Awareness Week 2018, which runs until October 15.

With the Scottish Government announcing funding and support to establish the Pathway across Scotland, The National Assembly for Wales and the Northern Ireland Assembly are also considering how to use it as a blueprint for improving bereavement care.

Dr Harmer said: “Bereavement care for anyone who has suffered a miscarriage or pregnancy loss, or the death of a baby, must get better and we believe we have the solution.

“I urge all NHS Trusts and Health Boards to adopt the Pathway and ensure care around baby loss is offered in line with these standards.

“The roll-out of the National Bereavement Care Pathway for pregnancy and baby loss is a crucial step towards ensuring that all health professionals in the UK can provide excellent bereavement care.

“I hope that the public, health professionals, and politicians alike will back this vital programme so that every family heartbroken by the death of their babies is offered the very best bereavement care and support, wherever they live in the UK, when they need it, for as long as they need it.”

• Read more: Our Missing Peace – how bereaved mum Nicole Bowles was inspired to help other parents break the silence they can endure after child loss