An inquiry into the preventable deaths of babies in Sussex will fail to learn the lessons as it “systematically” excluded dozens of families, Wes Streeting has been warned before a meeting with bereaved parents.
The health secretary has ordered a review of nine infant deaths at the University Hospitals Sussex NHS foundation trust amid maternity scandals across England. However, families are calling on Streeting to expand the investigation to all those who died and might have survived with better care.
To date, the families of more than 60 babies who died between 2019 and 2023 have expressed concerns about their care, although the true figure is expected to be higher.
Dr Marija Pantelic, a public health expert whose baby Sasha died in the care of UH Sussex in January 2022, said the narrow scope and opt-in nature of the review was dangerous and potentially harmful as it would be based on the experiences of an “overwhelmingly white and British” group of parents.
Pantelic, whose baby is included in the review, said she would raise the concerns directly with Streeting when he meets bereaved families on Wednesday.
Parents want an expanded investigation to be led by Donna Ockenden, the senior midwife who is leading maternity inquiries into preventable deaths at NHS trusts in Nottingham and Leeds. They also want the Sussex investigation to actively seek out families who are affected so it is not based only on the nine cases whose parents have raised the alarm.
Pantelic, an associate professor in public health who specialises in health inequalities, said it should alarm Streeting that the review would be based on the experiences of the “overwhelmingly white and British” families who had come forward.
“If you only hear from certain groups, you will only see certain problems,” she said. “For instance, you can be sure not to identify racism if you only hear from white families. If you fail to identify the real drivers of harm, the solutions you propose will be partial at best, and harmful at worst.”
Black women are more than twice as likely to die in childbirth compared with their white counterparts across the UK, official figures show, while women from Asian backgrounds are also at higher risk.
Pantelic said the current opt-in structure of the Sussex review would “systematically exclude those least able to navigate the system, and most likely to have experienced harm”.
She added: “The result is a dangerous distortion. Those at greatest risk are least visible in the evidence. This means the harm is often underestimated, and we end up misunderstanding what is actually causing it. If we get the causes wrong, the solutions aren’t going to work.”
UH Sussex said earlier this year that it had recruited 40 new midwives, “eliminating” the vacancy rate it had at the time of a number of the preventable deaths. Families are concerned that the NHS trust’s response assumes understaffing is the core issue and that a narrow review risks missing bigger structural failings.
Pantelic said: “Until the causes of avoidable deaths are properly identified, proposed solutions risk missing the mark. The people you include in a review shape what you end up seeing, and what you think is causing the problem.”
A Department of Health and Social Care spokesperson said: “Families have endured unacceptable failures in maternity and we are committed to ensuring the review process itself does not add to that burden.
“Their experiences and wishes will shape a review that they can have full confidence in, which is based on evidence and uniquely tailored to Sussex. We will be updating the families on progress soon to ensure the review will deliver the answers and accountability they deserve.”