Each year around 4000 families in the UK are devastated by the stillbirth or neonatal death of their baby (Sands, 2022a). With many more a˚ ected by losses earlier in a pregnancy, the impact of baby loss is greater than many realise.
Parents who receive poor bereavement care after their baby has died have their grief exacerbated, but good care can and does help them on their painful journey. That is why the UK charity Sands has its core aims to save babies' lives and to provide the best possible care and support after the death of a baby.
For many years, Sands has supported healthcare professionals through the provision of training (Sands, 2021), publication of bereavement care manuals and tools and more recently, the development of the National Bereavement Care Pathway (NBCP, 2022a).
The NBCP promotes nine core standards of bereavement care, applicable to all experiences of loss, including miscarriage (including molar and ectopic pregnancy), termination of fetal anomaly, stillbirth, neonatal death and sudden unexpected death in infancy.
NHS trusts and boards that put in place these standards can ensure that families have a bereavement care journey that is as manageable as possible. Healthcare professionals trained in the specifics of bereavement care, for example, understanding grief, learning how to help create memories and knowing how to sensitively o˚ er and handle postmortem and funeral arrangements, are better equipped to support parents than those who have only received basic communication skills training unrelated to bereavement care.
Trusts and boards that are committed to these standards are also able to ensure that bereavement rooms are suitable and sensitive spaces with appropriate facilities for newly bereaved families to make memories and receive the immediate care they need in the early days of their bereavement journey.
Donna Ockenden's (2022) review published for NHS England earlier this year highlighted among its immediate and essential actions the importance of NHS Trusts adopting the NBCP. At the time of writing, more than 100 hospital trusts in England (85%) are signed up to the NBCP (Sands, 2022b), while eight of the 14 hospital boards in Scotland are part of the early adopter programme, which will conclude later in 2023 (NBCP, 2022b).
Sands has played an important role in campaigning for better access to bereavement care training for healthcare professionals. One result of these e˚ orts was the new NHS England funding stream of £1.3m announced in the summer of 2022 to improve bereavement care provision (Sands, 2022c). This will go some way toward addressing the provision of training, but much more must be done to ensure bereavement care standards are continually raised across all trusts.
Since the pathway was introduced in England, more healthcare professionals feel they now have consistent and clear guidelines that support them to provide good quality care for bereaved parents, as highlighted by the independent evaluation of the pilot programme (NBCP, 2019). The evaluation showed that the NBCP improved the dialogue between hospital departments, which has helped professionals to deliver care more consistently. Parents also said the hospital was a caring and supportive environment, that they were treated with respect and many felt the decisions they made in the hospital were the right ones at the time.
The NBCP (2022c) in Scotland is being funded by the Scottish Government and is now being rolled out in partnership with Sands, other baby loss charities and the Royal Colleges of Maternity, Nursing and Obstetricians and Gynecologists.
In Wales, a bereavement subgroup has started scoping work on a set of national bereavement care standards (Welsh Government, 2021). In Northern Ireland, there is slower progress on revising the bereavement pathway, but boards have told Sands that they are committed to delivering high-quality bereavement care.
Sands recognises the key role that midwives and other healthcare professionals play in supporting parents at such a difficult time. In addition to providing training and tools, Sands' helpline is available for anyone a˚ ected by the death of a baby. The charity also runs best practice workshops for those trusts working on the NBCP. Please come and join us as we work together to support and care for those families who need it most.