Saturday 26th of September marked an important step forward in the independent review of maternity and neonatal care at Leeds Teaching Hospitals NHS Trust, chaired by Donna Ockenden.
Families met with the Chair to consider the Terms of Reference, which were published on 26 September, and to understand how the Review will progress from this point onwards. Case reviews will begin in November 2026.
Why is the review needed?
The Leeds Review follows growing concerns raised by families and staff about maternity and neonatal care at Leeds General Infirmary and St James’s University Hospital, and comes against the background of wider national reviews into maternity services. The Review is parent-led, following tireless campaigning by families for Donna Ockenden to be appointed.
Families who attended Saturday’s meeting at the Met Hotel heard that the Leeds Review is expected to have a broad scope, looking at the journey of care and the departments and services supporting families throughout.
The Terms of Reference for the Leeds Review were published following approval by the Health and Social Care Secretary, Yvette Cooper MP. They provide an important framework for the Review and help families understand what will be examined and how they can contribute.
The Review of care in Leeds is intended to be much wider than the Nottingham Ockenden review, and will cover:
- Stillbirths from 24 weeks’ gestation
- Neonatal deaths from 22 weeks’ gestation on the neonatal unit, and within 28 days of birth post-discharge
- Babies diagnosed with hypoxic ischaemic encephalopathy (HIE grade 2 and 3) who were cared for on the neonatal unit
- Babies admitted to the neonatal unit with significant hypoglycaemia
- Babies admitted to the neonatal unit with kernicterus
- Maternal death while pregnant, or within 6 weeks of the end of pregnancy, from any cause related to, or aggravated by, the pregnancy or its management
- Maternal death by suicide while pregnant or within one year of the end of the pregnancy
- Severe maternal harm, including:
- All unexpected admissions to critical care
- Major obstetric haemorrhage, where blood loss exceeds 2.0 litres or requires a blood transfusion
- Unplanned peripartum hysterectomy and other major surgical procedures arising from the maternity episode
- Eclampsia
- Sepsis
- Pulmonary embolus
- Fourth-degree tears
- Admission of women for causes related to mental health to a psychiatric unit while pregnant, or within 42 days of the end of pregnancy
- Post-death care of mothers and babies in the mortuary and associated after-death care services in all settings in the Trust
Families who received care between 1 January 2011 and 31 December 2014 will need to opt in if they want their cases reviewed. Families who received care from 1 January 2015 onwards will be included automatically unless they opt out. Families are able to reconsider throughout this period and join at a later date should they wish to do so. The review period will extend up to and including 31 March 2028, and families can also choose to opt in at any time. The Trust is then expected to provide records for the Review.
The Review will also consider the actions taken by professional regulators in relation to the specific cases under review, to ascertain whether their actions support accountability, regulatory action and the identification of potential learning.
Putting families at the centre
One of the strongest messages from Saturday’s meeting with Donna Ockenden’s team was the importance of family voice.
As more families have felt able to come forward, the Review’s scope, and understanding of the issues, have developed. The Review team intends to publish a timeline explaining when and how families and staff will be able to contribute.
The Review will involve thorough family engagement, staff engagement and community engagement, underpinned by psychological support.
A Family Voices platform will be developed to provide a space for families to share relevant experiences in whatever way suits them, including through conversations, written evidence, photographs or presentations.
Ultimately, the Review must deliver more than another report: families need to be heard, concerns taken seriously, accountability established, lessons translated into change and support provided throughout an emotional and uncertain process.
Where to find support
There are a range of local and national charities registered with the Donna Ockenden Review team to provide vital support to families. Links to these organisations can be found below.
Supporting families through the process
At CL Medilaw, we understand that the impact of a birth injury or serious maternity or neonatal event reaches far beyond the legal claim. Our work is about supporting children and families holistically and helping them understand what help they may need now and in the future, whether that involves specialist rehabilitation, therapy, care, education or other services.
We also recognise that taking legal advice can feel daunting, particularly when a family is already dealing with trauma, uncertainty or the ongoing needs of a child.
Our role is to provide clarity, compassion and specialist legal support while keeping the needs of the child and family at the centre.
Fran Manley, birth injury specialist at CL Medilaw, comments: “For the families who have spent years raising concerns, seeking answers and asking to be heard, this is an important moment, but it is also a difficult one. Many families will have to revisit experiences that have had a profound and lasting impact on their lives. Behind every case is a mother, a baby, a child and a family living with the consequences of what happened.
“We will continue to follow the Leeds Review closely and support families as this important process develops.
“Most importantly, we will continue to listen. Families matter. Their voices matter. They matter now, and they always will.”
A wider review such as this can be deeply unsettling for those affected and their families. Our specialist birth injury team understands the impact this can have and provides compassionate support, clear guidance and expert legal advice. If you have questions about the treatment you or a family member has received, or would like to better understand your options, we are here to listen and help you navigate the next steps with confidence.
Call us for a free initial chat on 0345 241 0154 or email enquiries@clmedilaw.co.uk
