- Scope of independent review into University Hospitals Sussex NHS Foundation Trust confirmed
- Review will examine maternity cases from 2018 onwards and reflects the priorities and concerns raised directly by affected families
- Scope was jointly agreed following a series of meetings between families and the Secretary of State
Harmed and bereaved families in Sussex will get the answers they have been fighting for after the Health and Social Care Secretary confirmed the scope of the independent review into maternity and neonatal services at University Hospitals Sussex NHS Foundation Trust (UHSx), chaired by Donna Ockenden.
The review will shine a light on maternity and neonatal care at the trust and set out the changes needed to ensure services are safe and equitable for every family.
Families helped shape the scope of the review, ensuring every person who experienced harm gets the answers they deserve, driving lasting improvements to maternity safety.
The review will cover cases of stillbirth, neonatal death, maternal death, neonatal harm caused by severe brain injuries, and severe maternal harm.
Every family who meets the terms of reference will be automatically included in the review unless they choose not to be, with no need to apply or come forward, ensuring the most vulnerable and bereaved families are not left out.
It is expected that the review will examine more than 1000 cases spanning over a decade.
The vast majority of births in the NHS have good outcomes, and women should continue to attend all maternity appointments. Women and families are encouraged to raise any concerns with their midwife or healthcare team without hesitation.
The Truth For Our Babies 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.
Wes Streeting, Secretary of State for Health and Social Care, 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.
Donna Ockenden said
It’s 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 Reference 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.
As independent chair, Donna Ockenden will also have the power to consider cases before 2018 and those where women believe they meet the criteria around severe harm, but whose records are incomplete or missing, ensuring the review is as thorough and inclusive as possible.
The full terms of reference will be developed with Donna Ockenden and families in the coming months.
The independent review at UHSx follows concerns raised by harmed and bereaved families about the safety of care provided at the trust. The Secretary of State met with a core group of families and MPs in March and April this year and committed to appointing an independent chair and agreeing a scope for the review at pace.
Today’s announcement comes as the Care Quality Commission (CQC) upgrades its rating for leadership at UHSx from inadequate to requires improvement.
The government is determined to go further and faster to ensure families at UHSx and others across the country get the safe, high-quality maternity care they deserve. Since July 2024 across England, it has
- recruited an extra 2,000 midwives
- invested more than £149 million in 122 infrastructure projects across 49 NHS trusts to improve the safety of maternity and neonatal care facilities
- implemented a new programme to reduce the 2 leading causes of avoidable brain injury during labour
- piloted Martha’s Rule in maternity and neonatal units in 14 trusts across 6 regions to give patients and families the right to request a second opinion
- launched a package of initiatives and interventions to reduce stillbirths, neonatal brain injury, neonatal death and preterm birth
* introduced a Perinatal Culture and Leadership Programme to develop a culture of safety, learning and support for leads from all maternity and neonatal units - created targeted schemes to promote midwife retention and the Graduate Guarantee, so that every qualified nurse and midwife in England can apply to join the health workforce
- expanded maternal mental health services to help women, and extended the baby loss certificate scheme to include all historic losses
- rolled out guidance across the NHS to tackle the leading causes of maternal death, including thrombosis, mental health, epilepsy and haemorrhage
- launched an anti-discrimination programme and a system to better identify safety concerns
- published an inequalities dashboard through NHS England to support the identification of areas where specific populations face the greatest disparities, enabling tailored interventions and more equitable support.
The Secretary of State has also
- ordered a national maternity investigation, chaired by Baroness Amos, to develop one set of national recommendations to drive improvements in maternity and neonatal care across England and reduce inequalities in the delivery of these services
- appointed Donna Ockenden to chair an independent review of maternity
- committed to chairing a National Maternity and Neonatal Taskforce to ensure the investigations’ recommendations translate into action.
