The joint Audit of Bereavement Care Provision in UK Neonatal Units (2018), published today by Sands, Stillbirth and neonatal death charity, and Bliss, for babies born premature and sick, reveals that most services lack sufficient specialist staffing input and appropriate facilities to support grieving families.

The report finds that 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.

The report recommends steps that all NHS Trusts and Boards can take to remedy this, 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.

Improvements to bereavement care are urgently needed

Every week in the UK around 40 babies die in the neonatal period – from birth to 28 days old. The care that bereaved families receive before, during and following the death can have a critical impact upon their wellbeing in the months and years ahead.

The findings are revealed as the latest figures from the Office for National Statistics show a worrying  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, refocussing the significant challenge of meeting the Government’s target to reduce perinatal deaths by 20% by 2020 and 50% by 2025.

Key findings

  • 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 can be incredibly distressing.
  • Bereavement care training is not available to staff in one in five units.
  • Over a quarter of units provide no emotional support for neonatal nurses, and over 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 ten said that they had any dedicated time set aside to perform this role on the neonatal unit (and two thirds of these staff had less 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.

“NHS Trusts and Health Boards need to ensure that neonatal units have the support and resources they need to maintain best practice and ensure all bereaved families receive the highest quality care. I urge them to implement the recommendations of this audit and to adopt the National Bereavement Care Pathway for pregnancy and baby loss, to ensure care around baby loss is offered in line with these standards.”

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.

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

Recommendations for all NHS Commissioners, Trusts and Boards

The Audit makes recommendations to improve bereavement care in neonatal units including ensuring all units have access to:

  • A trained health professional responsible for bereavement care with the time to support both bereaved families and upskill the wider healthcare team.
  • Bereavement care training for all staff who come into contact with bereaved parents.
  • At least one bereavement room, designed or situated so parents are not able to hear other families and babies.
  • A trained senior member of staff available to request post-mortem consent.
  • Translators so that family members are not routinely asked to interpret materials.

Further reading

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

The Bliss Baby Charter places families at the centre of their baby's care and is a practical framework that units can assess themselves against.