Reviewing the death of a baby is part of standard NHS care. It is a vital part of helping parents understand as much as possible about what happened and why their baby died. This will be the most pressing question for the majority of parents.
Reviewing all deaths is also a way of understanding whether there are any improvements to care that could be made for future families. Understanding these could save lives.
An enquiry in 2015 (MBRRACE-UK confidential enquiry into babies who died after 37 weeks of pregnancy before birth ‘antepartum term stillbirths’) found that in 60% of stillbirths occurring at term, the stillbirth might have been prevented if health professionals had followed national guidelines. An MBRRACE-UK enquiry in 2017 found that 80% of babies who died as a result of something going wrong in labour, after 37 weeks' gestation, might also have been prevented had babies received different care. Although professional groups recommend that hospitals review care after a baby's death, the confidential enquiries found that only one in ten hospitals carry out a review and many of these are not good quality. Few include the parents' perspective of their care.
Sands has long campaigned for every baby’s death to be reviewed in a thorough way and to include parents' own perspective of their care, their questions and concerns. After all parents have the greatest stake in understanding why their baby died. It's also important to realise that parents, who sit at the centre of the mother's and baby's care, have a 360 degree view of events, and therefore a perspective which is both unique and potentially valuable to clinicians trying to understand what happened.
Sands is at the heart of work to ensure that this happens in a sensitive and meaningful way. We are 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/PMRT collaborations and the National Child Mortality Database Steering Group.
Perinatal Mortality Review Tool (PMRT)
The PMRT is now available for free across England, Scotland, Wales and will soon also be available in Northern Ireland. The PMRT is an web-based tool which supports robust hospital-based reviews for every late fetal loss, stillbirth or neonatal death (of babies more than 500 grams), up to 4 weeks of life and including babies who died later but spent time in a neonatal care unit.
The PMRT's first annual report summarising the quality and findings of the first 1,500 reviews which used the web-based tool, is available here: https://www.npeu.ox.ac.uk/pmrt/reports
Sands is directly involved in the development of the PMRT which is run by a collaboration led by MBRRACE-UK (Mothers and Babies: Reducing Risk through Audit and Confidential Enquiries across the UK).
Sands' aim is to ensure that the voice of parents is at the heart of any review process, and that they are given the opportunity to ask questions and give their perspective of their care. Numerous resources to support health professionals in implementing the tool, and particularly in engaging parents in the review of their baby's death. 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 now available on the PMRT website https://www.npeu.ox.ac.uk/pmrt/parent-engagement-materials
To read why it's important to offer parents the opportunity to share their views and questions as part of the review process download "Role of parents in reviews" presentation; or hear Charlotte Bevan, who's part of the PMRT collaboration, discuss why some parents may want to engage in review, in this podcast.
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. If they do, the team can call for better funding and guidance to help hospitals improve safety on labour wards.
Each Baby Counts aims to reduce such tragedies by half by 2020.
Read the Each Baby Counts progress report, published in June 2016.
For more information on Each Baby Counts, go to www.rcog.org.uk/eachbabycounts
Sands is a member of the Independent Advisory Group for Each Baby Counts, ensuring parents’ views are heard.
We ran a survey of over 270 parents about involving parents in the review of their baby’s care for the 2016 progress report and which we presented at the report launch.
Healthcare Safety Investigation Branch
The Healthcare Safety Investigation Branch (HSIB) was established in England in April 2017 and their investigations into baby deaths started in May 2018. HSIB is funded by the Department of Health but works independently.
HSIB will carry 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 also only triggered with parents' consent.
Parents should be notified before they leave hospital if an HSIB investigation is likely to take place. An investigator will then 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 can be found here: www.hsib.org.uk/maternity/resources/trust-pack/
Principles for engaging parents in review/investigation
New National Child Mortality Database (NCMD)
Sands is on the Steering Group for the new 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 and can be found here https://www.ncmd.info/2019/10/10/ncmd-publishes-first-annual-report/