Information for bereaved parents
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. 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 new 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 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 its findings. 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 being available until possibly a few months later.
Information is given here about:
- Why review of care is so important when a baby has died
- Why the quality of hospital reviews needs to be improved
- Using the PMRT to improve the quality of reviews
- What this mean for your personal information
- The inclusion of information in the PMRT without consent
- Opting out of having your information included
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 not all hospitals currently have a good review process. The UK’s Clinical Outcome Review Programme, MBRRACE-UK, runs ‘confidential enquiries’ of hospital care as a way of measuring quality of maternity care in the NHS. MBRRACE-UK stands for ‘Mothers and Babies: Reducing Risk through Audit and Confidential Enquiries’. The recent enquiries and work done by the Each Baby Counts programme, run by the Royal College of Obstetricians and Gynaecologists, show that not all baby deaths are currently reviewed and when they are reviewed many of the reviews are of poor quality. This means parents are not provided with all the information about what happened to their baby and why. It also means 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 needs to be improved
By 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 had 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 will be 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 a system that MBRRACE-UK already runs on behalf of all UK governments and which is kept in a secure way at the University of Oxford. This data system collects brief information about every pregnancy and birth which ends in the 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 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 using the PMRT 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 NHS number). 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 for any reason, unless we have to do this by law.
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 800,000 babies are born in the UK every year and gaining consent from every parent would make the work impossible.
The MBRRACE-UK and PMRT team are both a collaboration of researchers and clinicians. We regularly consult on our work and its progress with over 25 mother and baby charities who support families where a baby has died or are involved in research in the area of maternity care and/or baby death.
Importantly, we have also 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 about Parents and Health Service Users page.
It is only possible to use personal information in this way, without obtaining consent, following a successful application to the Confidentiality Advisory Group for England and Wales. For the purposes of the PMRT we have made this application: 17/CAG/0150.
More information about this process is also available on the Information about Parents and Health Service Users page.
Opting out of having your information included
While we do not seek consent from every parent, if you are a parent whose baby has died you do 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.
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 please read all the information on this webpage and on the MBRRACE-UK Information about Parents 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 consultant or midwife know your decision. Alternatively you can contact the MBRRACE-UK team directly in writing and we can let your consultant know:
Professor Jenny Kurinczuk
National Programme Lead MBRRACE-UK
National Perinatal Epidemiology Unit
Nuffield Department of Population Health
University of Oxford Old Road Campus
Headington, Oxford OX3 7LF
Telephone to speak to Prof Jenny Kurinczuk 01865 617909