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Information for bereaved parents

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Overview

This information explains what a hospital review is, why it's important and how reviews will be improved across the UK by the use of the new National Perinatal Mortality Review Tool (PMRT). This information is for parents whose baby has died before, during or up to four weeks after birth and where the baby has died having been cared for on a neonatal unit. We hope this information clearly explains what the National Perinatal Mortality Review Tool means for you and your family, why information about you is important to the review process and how this information is used and protected.

When a baby dies before, during or after birth, the hospital (or hospitals) where the mother and baby were looked after should review the care the mother and baby received. This is called a hospital 'perinatal' or 'neonatal' review and is when a clinical team looks through the mother's and baby's hospital notes to understand the events that led up to the death of the baby. It is different to a coroner's investigation or inquest.

The hospital review forms part of standard NHS care which should be provided for every family after a death so that bereaved parents have as much information as possible about why their baby died. Another important reason hospitals carry out reviews of any baby who is stillborn or dies in their care, is so that hospitals can learn from what happened in order to improve care and prevent, if possible, the death of other babies in the future.

As a bereaved parent you should be told by your hospital that a review is going to take place and be offered the opportunity to ask questions or provide information about your care for the review panel to think about during their review. You will not be asked to attend the review meeting yourself. Once the review has happened you should be offered an appointment to see your consultant to discuss the findings of the review. If you consented to a post-mortem those results should have been considered when the review was done, and should also be discussed with you at your consultant appointment. This may be several weeks after your baby died and might involve more than one appointment, as all the information needed to complete the review may not be available until possibly a few months later.

Of note, in England some baby deaths are reviewed by the Healthcare Safety Investigation Branch (HSIB) in which case the local hospital review is postponed until the HSIB investigation is complete.

Why review of care is so important when a baby has died

Reviewing the death of every baby in a standardised, high quality way is important in order to understand what happened and to give parents answers. It's also important as a way of improving the health service wherever possible to ensure every family receives the best care in the future.

We know, however, that in the past not all hospitals had a good review process in place. This meant that parents were not provided with all the information about what happened to their baby and why. It also meant that the opportunity to improve care for future parents, based on lessons learned through review when a baby dies, is also missed.

Why the quality of hospital reviews needed to be improved

In 2012, listening to both parents and health professionals, the baby charity Sands recognised the need to improve and standardise the quality of hospital reviews of baby deaths. Together with the Department of Health they set up a working group of both health professional experts as well as parents who'd experience of bereavement and hospital review, to decide what should be done. The idea of a standardised Perinatal Mortality Review Tool was developed by the group, with government support.

MBRRACE-UK was commissioned by the Department of Health and the Welsh and Scottish governments to develop the National Perinatal Mortality Review Tool (PMRT).

The purpose of the national PMRT is to support hospital reviews by providing a standardised, structured process so that what happened at every stage of the pregnancy, birth and after, from booking through to bereavement care, and care when the family leaves hospital, is considered by staff reviewing care in a robust way. Importantly, parents will be asked if they have questions or views on their care they'd like the review panel to respond to. Once the panel has finished its review the results are fed-back to parents.

Using the PMRT to improve the quality of reviews

The PMRT is an on-line tool, but the information it collects is not public. It is linked to the system that MBRRACE-UK already runs on behalf of all UK governments and which is kept secure at the University of Oxford. The MBRRACE-UK data system collects brief information about every pregnancy and birth which ends in a late miscarriage, a stillbirth or death of a baby. This is in order to monitor what is happening between different hospitals, regions of the UK and countries in the UK, and to understand what factors contribute to baby deaths so that MBRRACE-UK can make recommendations to prevent future deaths, wherever possible. See Information about Parents and Health Service Users. You can see the information MBRRACE-UK already collects from hospitals about babies who are stillborn and die and their mothers on the FAQ's page.

The PMRT collects more information about an individual mother and baby than the MBRRACE-UK data system, because the hospital reviewers need to look in more detail at the care the mother and baby received throughout pregnancy, birth and afterwards. The hospital reviewers will discuss these details at a face-to-face review meeting, using the PMRT process. They then summarise their findings and produce a report for parents. This report should also answer any questions parents have and recommend actions needed to improve care for future families.

What this mean for your personal information

Information provided when the PMRT is used feeds into the MBRRACE-UK data collection system and vice versa. This means that if you are a parent whose baby has died, both systems will include your personal details and that of your baby (name, address, date of birth and postcode). While MBRRACE-UK do not use this personal information for their purposes, it is needed by the hospital reviewers using the PMRT to ensure the clinical team undertaking the review are able to identify the correct mother and baby to review.

MBRRACE-UK has a legal duty to keep information about you confidential and secure and we take this responsibility very seriously. We comply with all NHS information security requirements and complete the NHS information governance assurance process (the NHS IG Toolkit) on an annual basis. We will not share any information that identifies you unless we have a legal basis for doing so.

The inclusion of information in the PMRT without consent

The hub for the MBRRACE-UK data collection is based at the University of Oxford. We do not seek parents' consent to collect information about them, because in order to do our work successfully we also use data for the entire population of women giving birth and the babies born to compare this information with information about babies who die. Over 720,000 babies are born in the UK every year and gaining consent from every parent would not be possible.

The MBRRACE-UK and PMRT team are both a collaboration of researchers and clinicians. Our work is supported by national pregnancy and baby loss charities across the UK.

We have discussed the issue of consent with the mother and baby charities we work with who believe strongly that, provided information is given to parents about how information about them is being used, the vast majority would support the work of MBRRACE-UK and the PMRT, since both are designed to prevent avoidable deaths in the NHS.

More information about the MBRRACE-UK data collection and why we do not try to obtain consent is available on the Information for Mothers, Parents, Families and Health Service Users page.

It is only possible to use personal information in England and Wales this way, without obtaining consent, following approval by the Secretary of State following a successful application to the Heath Research Authority Confidentiality Advisory Group for England and Wales. For the purposes of the PMRT we have made this application: 17/CAG/0150. We made a similar application to the Public Benefit and Privacy Panel for Health and Social Care for Scotland: 1718-0249

Northern Ireland has a different legal system and consent is obtained before a PMRT review is carried out. MBRRACE-UK do not receive identifiable information from Northern Ireland.

We have also applied to have the National Data Opt-Out for England waived. If you have applied via the National Data Opt-out not to have your health data used for anything other than your direct medical care this opt-out would normally be applied by Trusts and NHS Digital and they would not provide us with information about you. However, we have also applied to Heath Research Authority Confidentiality Advisory Group for England and Wales to obtained special permission so that the National Data Opt-Out is not applied. This application was made as an amendment to our existing approval 17/CAG/0150.

Opting out of having your information included

While we do not seek consent from every parent, if you are a parent whose baby is stillborn you have the right to opt-out of having your information used both for the purposes of the MBRRACE-UK national surveillance system and for the use of the PMRT to support the review of your pregnancy and your baby's care.

If you are a parent in Wales, Scotland or Northern Ireland whose baby had died after being born, you have the right to opt-out of having your information used both for the purposes of the MBRRACE-UK national surveillance system and for the use of the PMRT to support the review of your pregnancy and your baby's care.

If you are a parent in England whose baby has died after birth, the hospital has a legal duty under the Children Act to review the care received during pregnancy and after birth using the PMRT. This information is then provided to the local Child Death Overview Panel (CDOP) whose legal duty is to review the deaths of all children up to the age of 18 including babies.

While you do not have the right to opt out to having a hospital review of your care conducted, since this is part of standard NHS care, if you opt out of the use of the PMRT, the clinical team conducting your review will not be able to use the PMRT standardised process we have developed and will have to use another format for doing their hospital review.

If you are thinking about opting out we would ask you to please read all the information on this webpage and on the MBRRACE-UK Information Mothers, Parents, Families and Health Service Users page before making a decision.

If you decide that you would prefer that the clinical team undertaking the review of your pregnancy care and the care of your baby does not use the PMRT to support that review please let your midwife or doctor know your decision. Or you can contact the MBRRACE-UK team directly in writing and we can let your midwife or doctor know:

MBRRACE-UK
National Perinatal Epidemiology Unit
Nuffield Department of Population Health
University of Oxford
Old Road Campus
Headington
Oxford
OX3 7LF

Or

Email: mbrrace-uk@npeu.ox.ac.uk

Updated: Monday, 27 June 2022 13:59 (v27)