Better bereavement support

New research by Bliss and Sands shows bereavement support for parents whose babies die in neonatal services is worryingly inconsistent and under-resourced.

Sadly, the majority of childhood deaths occur in the first few weeks and months of life - most commonly in a hospital neonatal unit. However new research by Bliss, the UK charity for premature and sick babies, and Sands, the stillbirth and neonatal death charity, has shown that bereavement care for parents whose babies die in this period is worryingly inconsistent and under-resourced.

The joint Audit of Bereavement Care Provision in UK Neonatal Units (2018) reveals that most services lack sufficient specialist staffing input and appropriate facilities to support grieving families. The new research by Bliss and Sands found:

  • 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).
Neonatal Bereavement Care Audit Infographic

The Audit makes recommendations for all NHS Commissioners, Trusts and Boards to improve bereavement care in neonatal units including ensuring all units have access to the following:

  • 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.

Bliss and Sands are calling on all neonatal services to take forward plans to implement the Neonatal Death strand of the National Bereavement Care Pathway for Pregnancy and Baby Loss (NBCP), which provides a comprehensive framework and set of guidance for use by different clinical settings to audit this aspect of the service they provide and to promote the highest quality of bereavement care.

Bereavement audit report

Bliss and Sands' Audit of Bereavement Care Provision in UK Neonatal Units (2018)