Bereaved parents and family members often have a lot of questions about the different reviews and investigations that can take place and the detailed processes for each of these. Sands have compiled the following list of FAQs for bereaved parents and family members to help them make sense of all this information.
What is a hospital review?
A hospital review is part of standard NHS care. It is when a team of health care professionals at the hospital or hospitals (if the baby was transferred for care) where the baby was born and/or died review the care mother and baby received to understand as much as possible about what happened and why the baby died.
A review is not the same as a post-mortem, which is a medical investigation to understand the cause of death. Information from a post-mortem, if there is one, may add to the hospital review in understanding why a baby died.
What is the Perinatal Mortality Review Tool (PMRT) and how does it work?
The PMRT is a framework and online tool for doing a hospital review of a baby’s death to understand what happened and why the baby might have died. The online tool is filled out, usually by a midwife, with all the details of the mother and baby’s care. A review panel of different healthcare professionals then judges whether national and relevant local guidelines were properly used. This is to find out what happened and if the mother or baby’s care could have been improved in any way and the baby prevented from dying.
Why do hospitals do reviews of babies who die?
Hospitals review the deaths of babies and the care they received to understand more about why a baby died. A review team will look at whether appropriate care was given to a mum and her baby, in line with national and local guidelines. The PMRT brings information from medical notes about the mother, her pregnancy, birth and any other information about the baby (if the baby was in a special baby care unit for instance) into one place so they can be looked at together. If there the mother consented to a post mortem the review will include that information too.
It may be a review will find that the hospital or hospitals involved gave good care and nothing more could have been done to save the baby. It may be that the review finds care did not follow guidelines and more could have been done. Hospitals should be open and honest with families if this is the case.
Will my baby’s death definitely be reviewed by the PMRT team?
A hospital-based, PMRT review should be undertaken for all babies who are 22 weeks or more of gestation, or 500g where an accurate estimate of gestation is not available. If one of these two criteria are met, their death will be reviewed whether they die during pregnancy or during their first four weeks of life. A baby's death that happened outside hospital will also be notified to the coroner’s office (or procurator fiscal in Scotland). In some cases, the coroner will then open an investigation and possibly an inquest to understand more about why the baby died.
How will I know that a review is taking place?
You should be given a key contact at the hospital where your baby died. They should tell you about the review soon after your baby has died. Your key contact should give you written information explaining what the review is and what you should expect. You have a right to be involved in any review that happens Sands has played a key role in developing resources to help professionals in supporting parents through a review.
Who is part of the review team?
Health professionals representing all the areas of care you and your baby received will be on the review team. All review teams include midwives and an obstetrician but if your baby was on a specialist baby care unit (neonatal care or a specialist care baby unit) then a neonatologist should be present too.
Will the people involved in my care be on the review team?
Sometimes they are but not always. This may depend on work shifts and what staff are working in the hospital the day the review is taking place.
What if I have questions or my own views/concerns about what happened and why my baby died?
The hospital should let parents know the review is taking place and ask parents if they have any questions or issues they want the review team to address. This doesn’t mean parents are asked to attend the review meeting itself, but that a member of staff at the hospital (usually your ‘key contact’ at the hospital, which may be your bereavement midwife) will support you in recording your questions and concerns to ensure they are answered at the review meeting. If you haven’t been offered this opportunity but want to be involved, get in touch with your hospital as soon as possible to ask them. It is your right to be involved.
What if I don't have any questions about what happened?
Some parents do not have questions or concerns they want to share with the review team. Every parent and every situation is unique. The review report should still be shared with you regardless, if you wish, whether you have specific questions or not.
My baby died some time ago – will a hospital review have been done?
Some hospitals started using the PMRT to review deaths in early 2018 when NHS Resolution in England started encouraging hospitals to use the PMRT for all baby deaths. However, it wasn't used widely until 2019. Even if the PMRT was not used, some kind of review should have taken place to understand as much as possible about your baby’s death. You can ask your hospital if this was the case and get a copy of it.
If my baby was born in one hospital but died in another, who will do the review?
The hospital where your baby died is likely to lead the review of your baby’s death. The hospitals where your baby was born and died should work together to share information as it's important to understand your care in pregnancy as well as during labour and birth and any care your baby had after he or she was born.
What if my baby died at home, after he/she was born in hospital, will the hospital still review their care?
If your baby died within 4 weeks of being born in a hospital, or having received care in a neonatal unit at a later stage, then the hospital should also undertake a PMRT review. This is sometimes also called a Child Death Review. All this should be clearly explained to you by your hospital. The hospital will also notify the office of the coroner (England, Wales and Northern Ireland) or procurator fiscal (Scotland) will be notified. They may decide to open an investigation and order a post-mortem. But this is quite rare.
Is the information about me that’s put into the PMRT for the review confidential?
The information about you and your baby will only be used for the PMRT review. Information from the PMRT is linked to a data system run 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 late fetal loss, stillbirth or the 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.
The group commissioned to do this work, MBRRACE-UK, then makes recommendations to prevent future deaths, wherever possible. You can find out about what information is stored in the PMRT data system here. You can choose to opt out of the PMRT being used to review your and your baby’s care; since reviewing your care is part of standard NHS care, hospitals will find another way to review your care.
How long does it take a review team to finalise its report into my care?
If you consented to a post-mortem the review will not take place until the results of the post mortem are ready because the information from the post mortem will be important to consider as part of the review. This may mean that the review takes place after 3 months or so and its findings are not reported back to you until at least 4 months or later. If there is no post mortem, there will be less information for the review to consider. While this may mean it takes less time for the review to conclude its findings, it may also mean that the review cannot answer all your questions about why your baby died.
Can I see the final review report?
The final review report should be summarised in plain English for you, both in a letter and during a face-to-face meeting, if you wish. It is up to you how you would like the findings communicated back to you. You can also ask to see the final, more technical, report of the review into your baby’s death if you wish. Ask your hospital for this if you would like it.
If something went wrong with my care or my baby’s care will the hospital tell me?
NHS staff have a Duty of Candour to be open and honest with families when something goes wrong in NHS care. In cases where the hospital is already concerned that there may have been an issue with your care they will also open a Serious Incident Investigation. If your baby died at term (37 weeks’ gestation or more during labour or soon after birth, an investigation will be undertaken by the Maternity and Newborn Safety Investigations programme (MNSI) which is independent of the NHS. This will only happen with your consent.
If there's any concern that the care you received did not meet national or local guidelines and this may have contributed to your baby’s death, an urgent Patient Safety Incident Investigation (PSII in England, Wales or N. Ireland) or a Significant Adverse Event Review (SAER in Scotland) will be carried out.
What is a Patient Safety Incident Investigation?
Both the PSII and SAER look at the circumstances that led to your baby's death to identify what went wrong with NHS care. A PSII is carried out by the maternity service where you received your care. A PSII and SAER are the highest level of investigation a Trust or Health Board can undertake to understand if a family received poor care and the death of their baby was potentially avoidable.
Ideally, the PSII and SAER report should be shared with you while it is still in draft form so you can look at it and comment on it, before it is finalised. It can take many weeks or months for a full PSII to be completed. Your key contact should let you know when you can see the draft report. Once the report is finalised, you should be asked if you would like to hear about its findings in a face to face meeting with a senior clinician. If you have questions they should be answered.
The maternity service must be open and honest with you about any mistakes they may have made. This is called the duty of candour. Conducting robust investigations and being open and honest about mistakes ensures that the service learns from poor care to prevent future harm or deaths.
You can find out more detailed information about Patient Safety Incident Investigations and Serious Adverse Event Reviews.
What are my options if I am not happy with the investigation or the report findings?
If the hospital review has not answered your questions you have the right to raise a complaint or concern. This right is protected by the NHS constitution. But it isn’t always clear how to do this.
We have created a document to help you with raising a concern or complaint about any aspect of your care, should you want to. You can find the document here.