There are different types of reviews and investigations which may be done after a baby dies. These are done to understand whether any aspects of your clinical care could have been done differently and prevented your baby from dying.
Depending on the circumstances of your baby's death, you may be offered the reviews and investigations listed below. Click on the link for more information.
A hospital review of your care using the PMRT
The hospital review – or a Perinatal Mortality Review Tool (PMRT) - is done for ALL baby deaths after 22 weeks. For most babies, a PMRT will be the only review of their death.
The aim of a hospital review is to see if anything could have been done to prevent your baby from dying – this is called ‘avoidable harm’.
The review is an opportunity for the hospital to learn any lessons to improve care.
You have a right to be involved in the review of your baby's death. This means that you can ask the maternity service to address any questions or concerns you have about your care. You should be given the name of a key contact (a bereavement or risk midwife) who you can speak to about any questions or concerns.
What happens during a hospital review ?
The hospital review looks at your clinical case notes (and your baby's, if your baby was born alive) to see if there was anything about your or your baby's care, which if done differently, could have prevented your baby from dying. The hospital review also looks at the quality of bereavement care you received to ensure there wasn’t any further psychosocial harm to you after your baby died
The hospital review team will:
- Look at medical records, tests and results, including the results of a post mortem if you have consented to one
- Talk to staff involved
- Talk to you to find out if you have any questions or concerns
- Look at local and national guidance and policies to ensure they were followed
Before you leave hospital, staff should inform you about the review process and ask you if you would like to share your perspective or ask any questions about your care. It's important that any questions or concerns you have about your care are addressed by the hospital review team. Don't be afraid to tell them what your concerns are. Reviews are one of the ways services learn.
To support you in doing this, the hospital should provide you with a key contact.
Your key contact will:
- Call you within 10 days of you going home to inform you again about the review process.
- Ask if you would like to ask any questions or share your concerns.
- Give you choices about how you might contribute to the review, either in person, online or via telephone or email.
Parents are typically not allowed to attend the hospital review meeting but your key contact will ensure your questions are addressed in the meeting.
Keeping you informed
Unfortunately, it can take several weeks or months to gather all the information required for the review. If you'd like to meet with a consultant before the review takes place, you can arrange this through your key contact. However, they may not yet be able to answer your questions until the review is compete.
If you have consented to a post mortem, information from it will need to be included in the hospital review and this can add to the time it takes to complete your review.
Once the review is completed, a report is written. You will be invited to discuss the results with a senior clinician or member of the clinical team. The hospital will also send you the report by post or email if you prefer.
What if I don't agree with the report?
The outcome of the hospital review might be that good and appropriate care was given to you. Or it may find that the hospital needs to change the way staff do things. If the review found that the hospital did not provide adequate care, there wil be actions the hospital must take to improve care for future parents. The hospital must be open and honest about any mistakes they made and say sorry to about these mistakes.
If the hospital has made a mistake, they will start another type of investigation called a Patient Safety Incident Investigation (PSII). You can find out more in the next section.
If something went wrong with your NHS care
If there's any concern that the care you received was below the expected standard, 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 procedures and areas of improvement within the service. A PSII is carried out by maternity service where you received your care. A PSII and SAER are the highest level of scrutiny a Trust can give.
What does it involve?
PSII and SAER will likely be carried out at the same time as the hospital review and the findings of the investigation will be used to complete the hospital review. PSII and SAERs have a lead investigator who is from the maternity service. A multidisciplinary team will review your maternity notes. This team must include an external specialist who is from a different hospital, but has knowledge in a field relevant to your case. This provides some oversight to ensure the service are critical of their own performance and procedures. The review team will produce a report with the investigations' findings. The report should contain actions the service must take to prevent the same thing from happening again.
How will I find out the results of the investigation?
Ideally, the PSII amd SAER report should be shared with you while it is still in draft form so you can check it for inaccuracies before it is finalised. Once the report is finalised, it cannot be changed. 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 will be invited to attend a meeting with a senior clinician or group of clinicians to discuss it and to have your questions 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.
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. The section below on complaints might help answer your questions about how, and to whom you should complain.
When an independent investigation is needed - HSIB in England
If your baby dies during or after delivery after 37 weeks of pregnancy then they fall within the criteria of the Healthcare Safety Investigation Branch investigation (England only). With your consent, HSIB will be given access to your maternity notes and records to carry out an independent investigation into the death of your baby. The critical difference between an HSIB investigation and a PSII is that HSIB investigations are wholly independent and not run by staff from the Trust where your baby was born or died. HSIB is funded by the Department of Health but works independently.
If you give consent for an HSIB investigation, someone from HSIB will contact you approximately 4 weeks after your baby's death to invite you to speak about your experience of maternity care. They want to speak to you to learn how things happened from your perspective.
If you consent to an HSIB investigation, the hospital will still review your care with the Perinatal Mortality Review Tool. They will not, however, continue to carry out a serious incident investigation (SII).
Information about HSIB specifically for families can be found here: www.hsib.org.uk/maternity/resources/trust-pack/
If your baby died as a newborn - CDOPs in England
By law in England, the death of every child from a newborn up to 18 years old will receive a child death review. Completed reviews will be reviewed again by a local Child Death Overview Panel (CDOP). The child death review provides an overview of deaths to see if they could have been prevented where possible. Almost 100 CDOPs are in place across the country, and each is accountable to the local safeguarding children board. They are made up of representatives from social care, and the police as well as coroners and paediatricians. Panels meet several times a year to review all the child deaths in their area. Panels are not given the names of the children who died or the professionals involved in their care. The main purpose is to identify themese and prevent similar deaths in the future.
Child Death Overview Panels do not produce reports on individual child deaths, which is why parents do not receive any information from the panels about their individual child. The panels do, however, produce an annual report which is a public document.
You should have been told by your hospital if your baby's death was being reviewed by your local CDOP.
To find out the contact details of the CDOP in your local area go to: https://www.gov.uk/government/publications/child-death-overview-panels-contacts
Sands is closely involved with the National Child Mortality Database, a new project launched on April 1st 2019, which collects all information on child deaths across England to get a national picture of how deaths might be prevented and care improved for future families.
The role of the coroner or procurator fiscal
When a baby dies after birth the hospital must, by law, inform the coroner (or procurator fiscal in Scotland). It's his or her job to establish where and when the baby died and to establish the cause of death in a broad sense, and if it's thought to be 'unnatural'. If the coroner is concerned about the circumstances of the baby's death, he or she will open an investigation and then possibly an inquest. The coroner may then write a report about a specific concern if they feel this might prevent future deaths.
It's not common for a coroner to open an inquest into the death of a newborn baby in hospital, but if they do they may require a post mortem. In this instance, parents will not asked for their consent, but the coroners office should keep parents informed about any decisions that are made. As parents, you will be given the details of when and where the inquest will take place. You may be called in as a witness in which case you will have to attend the inquest. You can, though, ask any questions you have at the inquest. There may be other professionals who are also asked to be witnesses.
In Northern Ireland all stillbirths as well as neonatal deaths must be reported to the coroner. Because it involves more government agencies than a hospital review, and therefore more information gathering, an inquest can take 6 to 12 months or more to conclude. Currently in England, there is a national consultation about whether it is appropriate to include stillbirths within the jurisdiction of coroners.