The National Bereavement Care Pathway in the UK: improving standards in bereavement care
The loss of a baby at any gestation is devastating for parents. Poor bereavement care from the moment of first diagnosis and breaking of bad news, only exacerbates the profound pain felt by parents. Whilst approaches to bereavement care in the UK have greatly improved in recent years, inconsistencies remain in the care that is delivered, resulting in geographical variations.
Inconsistency in care is also encountered between different types of loss. Many parents whose babies died in earlier trimesters compare their lack of bereavement care poorly with the experience of friends who lost a baby at later stages of pregnancy. Parents should be able to access high quality, sensitive, individualised care, regardless of circumstance, gestation or postcode.
Thus the All-Party Parliamentary Group on Baby Loss asked Sands to lead a collaboration to implement the National Bereavement Care Pathway (NBCP). The aim is to ensure that all bereaved parents receive equal and excellent bereavement care that meets individual needs. The scope encompasses five experiences of pregnancy and baby loss: miscarriage, termination of pregnancy for fetal anomaly (TOPFA), stillbirth, neonatal death and Sudden Unexpected Death of an Infant (SUDI). Since March 2017 the project team has created guidance documents, training packages and other materials for professionals to support parents. A Parent Advisory Group has supported many elements of the pathway’s development. In October 2017 eleven NHS Trusts began piloting the pathway; in April 2018 a further 21 sites joined Wave 2.
An independent evaluation, surveying professionals and parents, demonstrated the positive impact and effectiveness of the pathway in delivering greater consistency and quality. The pathway has now been expanded into Scotland and more Trusts in England have signalled their intention to adopt the NBCP in 2019/20, with a roll out plan centred on nine core bereavement care standards.
The Health Research Agency confirmed (Jan. 2018) that “the [NBCP] project is not considered to be research and does not require review by an NHS Research Ethics Committee.” Parents approached to complete the NBCP survey for their views on their bereavement care were given clear information regarding the use and confidentiality of their data and agreed to a series of relevant statements before completing the survey. Throughout the survey they were also provided with the contact details of their Trust and of Sands and other support organisations.