Parents Demand Expansion of Sussex Baby Deaths Inquiry
Bereaved parents have issued a stark warning to Health Secretary Wes Streeting that an ongoing inquiry into preventable baby deaths in Sussex will fail to learn crucial lessons due to its systematic exclusion of dozens of affected families. The review, which currently focuses on just nine infant fatalities at the University Hospitals Sussex NHS Foundation Trust, is being criticised as dangerously narrow in scope.
Families Call for Comprehensive Investigation
During a scheduled meeting with Streeting on Wednesday, grieving parents will urge the health secretary to expand the investigation to include all cases where babies might have survived with better care. To date, families of more than 60 infants who died between 2019 and 2023 have raised concerns about their treatment, with experts suggesting the actual number could be significantly higher.
Dr Marija Pantelic, a public health specialist whose baby Sasha died under the trust's care in January 2022, will present these concerns directly. Pantelic, whose case is included in the current review, argues that the opt-in nature of the investigation creates dangerous limitations.
Structural Flaws in Current Approach
The current review structure systematically excludes those least able to navigate the system and most likely to have experienced harm, Pantelic explained. She emphasised that relying solely on families who proactively come forward results in an overwhelmingly white and British participant group, which fails to capture the full spectrum of maternity care failures.
This demographic limitation has serious implications for identifying root causes. If you only hear from certain groups, you will only see certain problems, Pantelic stated. 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.
Health Inequalities Amplify Risks
Official statistics reveal alarming disparities in maternal outcomes across the UK:
- Black women face more than double the risk of dying during childbirth compared to white women
- Women from Asian backgrounds also experience significantly higher mortality rates
Pantelic warned that the current review approach creates a dangerous distortion where those at greatest risk become least visible in the evidence. This means the harm is often underestimated, and we end up misunderstanding what is actually causing it, she added. If we get the causes wrong, the solutions aren't going to work.
Call for Ockenden-Led Investigation
Parents are advocating for an expanded investigation to be led by Donna Ockenden, the senior midwife currently overseeing maternity inquiries into preventable deaths at NHS trusts in Nottingham and Leeds. They also demand that the Sussex investigation actively seek out affected families rather than relying solely on the nine cases where parents have already raised alarms.
Families have expressed concern that the NHS trust's response - which included recruiting 40 new midwives to eliminate vacancy rates - assumes understaffing is the core issue. They fear a narrow review risks missing larger structural failings within the maternity care system.
Government Response and Next Steps
A Department of Health and Social Care spokesperson stated: 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.
The department confirmed that families would receive updates on progress soon to ensure the review delivers answers and accountability. However, parents maintain that without comprehensive inclusion of all affected families, any conclusions drawn will be incomplete and potentially misleading.
Pantelic summarised the critical concern: 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. The coming weeks will determine whether the investigation expands to address these fundamental flaws in its current approach.
