Sussex maternity review to examine more than 1,000 cases after families’ campaign

The review, led by maternity specialist and Chichester resident Donna Ockenden, follows years of campaigning by bereaved and harmed families across Sussex who raised concerns about the safety of care at University Hospitals Sussex NHS Foundation Trust.

Families had previously highlighted the long-term impact on those affected.

Robyn Davis, from Steyning, described ‘appalling suffering’.

"Families whose lives have been shattered, things like relationships, careers and family planning have been ruined and incomes lost," she said.

"Families who are experiencing severe mental health difficulties. Families who are relying on investigations, inquests and legal cases to simply understand what happened, and appallingly sometimes this doesn’t result in the answers or outcomes that families deserve."

Health Secretary Wes Streeting confirmed the scope of the inquiry on Wednesday, saying families had helped shape the review to ensure it reflects their concerns and experiences.

The investigation will cover cases from 2018 onwards, including stillbirths, neonatal deaths, maternal deaths, severe maternal harm and cases of neonatal harm caused by severe brain injuries.

Families who meet the review criteria will automatically be included unless they choose to opt out.

Ms Ockenden will also have the authority to consider cases before 2018 and cases where medical records are incomplete or missing.

Campaign group Truth For Our Babies welcomed the announcement, describing it as a significant step towards accountability and improved maternity safety in Sussex.

The group said: “Today we welcome confirmation that the Government has listened to families by agreeing to a full and inclusive review into maternity and neonatal services at University Hospital Sussex NHS Foundation Trust. Bereaved and harmed families across Sussex have spent years pushing for a review that reflects the scale of harm experienced due to failures in care and will establish what went wrong to deliver accountability and meaningful change.

“This outcome has been driven by our group's extensive organising, advocacy and research despite ongoing struggles, grief and trauma. We are confident that the scope of this review, led by Donna Ockenden and supported by her large multi-professional team will ensure that all voices are heard and importantly acted upon.

“It gives us hope that families will finally receive the answers they have been seeking. We need to know what has failed, why so many families have been harmed, and what immediate and then further and long-term actions will be taken to improve maternity safety for future parents and babies in Sussex.

“We would encourage any affected families or those who think they may have been affected who would like to connect with us to join the Truth for Our Babies Facebook group. It is a community for us to share our experiences and find other people who understand. Every bereaved or harmed family’s experience matters.”

The announcement follows months of engagement between Health and Social Care Secretary Wes Streeting and campaigning families who have called for an investigation into care at the trust. The review is part of a wider government effort to improve maternity and neonatal safety across England.

Mr Streeting said: "The families in Sussex who have campaigned so tirelessly for this review have shown extraordinary courage. Their commitment to ensuring no other families suffer what they have is admirable, and they deserve the full truth about what happened to them and their babies.

"The scope we have set out is deliberately broad and inclusive with all eligible cases included automatically unless families choose otherwise.

"Donna Ockenden has already shown, time and again, that she has the expertise and confidence of the families to lead a thorough review, and I have every confidence she will do the same in Sussex."

Ms Ockenden previously led the Shrewsbury and Telford maternity review and is currently chairing reviews in Nottingham and Leeds.

She said: "It is a privilege to have the trust of so many families across Sussex. Family voices will run through the heart of the Review; their perspective is essential in ensuring that the Review is fully inclusive and reflective of their experiences (what has happened to them), and meets their needs.

“Together with families, we will develop the terms of teference of the review to make sure that all families have the opportunity for their voice to be heard – especially disadvantaged, seldom heard and global majority families.

“My team and I are fully committed to ensuring that hearing from and learning from family experiences and the voices of current and former staff ‘on the ground’ across Sussex will shape improvements at the trust to the benefit of both families and staff.

“As we progress through the review, my team and I will share learning from what we hear from families and staff. This will help shape improvements so that local communities can feel confident that maternity care is improving whilst our work is ongoing.”

The Care Quality Commission has meanwhile upgraded its leadership rating for the trust from 'inadequate' to 'requires improvement'.

The government said further details, including the full terms of reference for the review, will be developed with families and Ms Ockenden in the coming months.