Reviewing care when a baby dies is part of standard NHS care. Reviewing all the care a mother and baby received during pregnancy, labour, birth and after birth, if the baby lived for a brief time, is not only vital to answer parents' questions about what happened and why their baby died, but a robust review may help identify lessons for improving care to prevent babies from dying in the future.
Sands is involved in a number of initiatives across the UK to improve the ways lessons are learnt after the death of a baby, through our membership of the MBRRACE-UK and Perinatal Mortality Review Tool (PMRT) collaborations and the National Child Mortality Database Steering Group, and as advisors on the DISCERN and UMPIRE research studies.
Sands has campaigned since 2012 for every baby’s death to be reviewed in a thorough way and for reviews to include parents' specific questions and concerns around their care and why their baby died. Historically we know reviews have been poor and parent engagement often minimal.
As a member of the PMRT collaboration, we chaired a working group in 2018 to determine a pathway for meaningful parent engagement. We are currently providing interactive, online training in the PMRT parent engagement flowchart and materials, supported by our Best Practice: Sands 6 Principles of Parent Engagement in Review.
Perinatal Mortality Review Tool (PMRT)
The PMRT was rolled out in 2018 and is available for free across the UK. The PMRT is a web-based tool which supports robust hospital-based reviews into care for pregnancy loss from 22 to 24 weeks, stillbirth and neonatal death up to 4 weeks of life. It includes reviews into the care of babies who died later but spent time in a neonatal care unit.
Sands is a member of the PMRT collaboration which is run by a collaboration led by MBRRACE-UK (Mothers and Babies: Reducing Risk through Audit and Confidential Enquiries across the UK).
The PMRT's four annual reports, from 2019 to 2022, summarise the quality and findings of the UK's hospital reviews using the tool, is available here: https://www.npeu.ox.ac.uk/pmrt/reports
PMRT Parent Engagement Flowchart and Resources
Sands' aims to ensure that the voice of parents is at the heart of any review process, and that parents are given the opportunity to ask questions and give their perspective of their care after their baby died. These should be addressed by the review team.
Chaired by Sands, a PMRT multi-disciplinary working group developed a series of resources to support health professionals in implementing parent engagement in the review process. These include:
- a flowchart, week by week pathway, for parent engagement
- information for parents about what the PMRT review means
- template follow-up letters for communicating with parents
- a guide for health professionals in writing sensitively-worded and plain English summaries of the review's findings to share with families
These are all available on the PMRT website https://www.npeu.ox.ac.uk/pmrt/parent-engagement-materials. Sands offers interactive, online training in using these materials according to Best Practice: Sands 6 Principles of Parents Engagement in Review.
Charlotte Bevan, who represents Sands within the PMRT collaboration, discusses why some parents may want to engage in review in the podcast below.
Healthcare Safety Investigation Branch, England
The Healthcare Safety Investigation Branch (HSIB) runs a maternity investigation programme in England only. HSIB is funded by the Department of Health but works independently.
HSIB carries out an investigation if a baby died during or after delivery after 37 weeks of pregnancy because something went wrong in labour. The critical difference between this and a hospital review is that HSIB investigations are wholly independent and not run by staff from the Trust where the baby was born or died. They are only carried out with parents' consent.
Parents should be notified before they leave hospital if an HSIB investigation is likely to take place. If parents consent to an HSIB investigation, an investigator will contact parents within 5 days of going home from hospital. A hospital review of a family's care will still be carried out even if an HSIB investigation is also being undertaken, but the hospital-based review will not conclude its findings until HSIB has finalised its report.
Information about HSIB investigations can be found here: https://www.hsib.org.uk/maternity/
Saying Sorry when a baby has died
In their own words: Sands survey of parents' experience of hospital review
Parents’ experience of hospital review into their care, Sands Survey 2021
Parents have the greatest stake in understanding why their baby died and every parent should be told a hospital review is taking place. It is also vital they are given the opportunity to ask any questions about their care they want the review to address and share their vies and concerns.
The Perinatal Mortality Review Tool (PMRT), which is used for local hospital review in the UK, has a pathway and resources to support communication with parents. But are these resources which were rolled out in 2019 working and what are parents’ experiences of review?
We wanted to find out in our 2021 Survey: Understanding why your baby died: parents’ experience of hospital review.
The findings of the survey are in published in both a full and thematic report.
In their own words: Full report
In their own words: Thematic analysis, Joanne Dickens, University of Leicester
In their own words: Infographic summary
Sands animation ‘A Unique Perspective’ supports professionals in understanding what’s meant by parent engagement in hospital review.
Each Baby Counts
Each Baby Counts is run by the Royal College of Obstetricians and Gynaecologists. It has been collecting information about every baby in the UK who dies or is seriously brain injured during birth. This information comes from the hospital’s review of what happened.
By collecting and assessing the information from all hospitals, the Each Baby Counts team can see if these incidents have things in common. Using the learning, the group makes recommendations for how to improve safety on labour wards.
Each Baby Counts aims to reduce such tragedies by half by 2020.
Sands is a member of the Independent Advisory Group for Each Baby Counts, ensuring parents’ views are heard.
National Child Mortality Database (NCMD)
Sands is on the Steering Group for the National Child Mortality Database, a data information hub for the deaths of all children under the age of 18, in England.(It doesn't include information on stillbirths. Information on stillbirths is collected by MBRRACE-UK.)
The NCMD was launched in April 2019 and aims to improve our understanding of why children die and prevent future deaths wherever possible.
The NCMD's first annual report on progress to set up the database, was published in October 2019
Their first impact report was published in July 2020