'It's so important all our voices are heard': Families welcome terms of review into Leeds maternity inquiry
The review will consider cases as far back as 2011, it’s been confirmed today
Families whose babies died or were harmed while under the care of maternity services in Leeds have welcomed the terms of reference agreed for an independent review, stressing the “importance of so many voices being heard”.
The terms for the review into Maternity and Neonatal Services at Leeds Teaching Hospital NHS Trust have been published today (Monday September 28), which confirmed that it will consider cases back as far as 2011.
The review, which is being chaired by senior midwife Donna Ockenden, will look into repeated maternity failures at the Trust, which is one of the largest teaching hospitals in Europe.
Families have welcomed the terms of reference, saying the timespan was a “major strength”.
They said: “We are pleased that Donna and the DHSC recognise the importance of so many voices being heard.
“This includes representing the voices of mothers who are no longer with us, having sadly died by suicide during pregnancy or up to one year post-birth, which remains the leading direct cause of maternal death in the late postnatal period.
“Our hope is that a platform has been created that will allow as many people to be seen and heard as possible, ensuring the snowball of truth continues to grow alongside the necessary accountability that must follow.”
The terms of reference document, which was created following extensive consultation with families, was reviewed by some of England's top maternity and neonatal clinicians, sets out how individual cases will be examined.
Clinical case reviews are due to begin in November.
The terms of reference set out include details on how the review will be governed, with a team of medical experts and legal advisors supporting Ms Ockendon.
It also sets out the timeframe for the review, with the results expected to be published on or before March 31, 2029.
The Minister for Women's Health and Maternity, Baroness Merron, said: “My thoughts are with every family whose baby died or who experienced devastating harm while receiving care in Leeds.
“Their determination has brought us to this important point, and we owe it to them to listen and to establish the truth.
“This independent review has been shaped by families themselves. Under Donna Ockenden, it will examine what happened, identify where care failed and make clear recommendations to help prevent other families suffering in the same way.
“Every woman and baby deserves safe, compassionate maternity care. We are determined to improve standards in Leeds and across the country.”
Families whose cases occurred between January 1, 2011 and December 31, 2014 will have the choice to opt in to the review for their cases to be considered.
Families affected from January 1, 2015 onwards will be considered in the review unless they actively choose to opt out.
There are eight categories of severe harm or death that the review will look at:
- stillbirths from 24 weeks’ gestation
- neonatal deaths from 22 weeks’ gestation on the neonatal unit, and babies who are discharged who die within 28 days of birth
- babies diagnosed with hypoxic ischaemic encephalopathy (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 42 days (6 weeks) of the end of pregnancy, from any cause related to or aggravated by the pregnancy or its management, excluding accidental or incidental causes
- maternal death by suicide while pregnant or within one year of the end of the pregnancy
- severe maternal harm, including eclampsia, sepsis and all unexpected admissions to critical care
As well as hearing the experiences of families impacted, the review will involve speaking to current and former staff, as well as professional regulators and local, regional and national stakeholders.
The clinical care of mothers, babies and families will be graded as part of the review as appropriate, minor concerns, significant concerns and major concerns.
Brendan Brown, Chief Executive of Leeds Teaching Hospitals NHS Trust, said: “We welcome the publication of the Terms of Reference for the Independent Review and remain committed to working openly and transparently with the Review Team.
“We recognise nothing can undo the trauma for families whose babies have been harmed or have died while receiving care in our hospitals. We are deeply sorry to those families, and we hope this review will provide them with the answers they deserve.”
On Saturday, families affected by the maternity failings came together at the Met Hotel for the second meeting led by Ms Ockenden - with many saying it was the first time they realised they were not alone in their experiences.
The families’ group said it was important for families to note that, even if they do not meet the strict criteria, they will still be able to contribute under the “family experiences” chapter of the investigation.
Ms Ockenden said: “On behalf of the Review Team and I, I would like to thank the families for their time and ongoing engagement to ensure that the Terms of Reference were inclusive and reflective of the populations’ needs.
“Your perspective and valuable feedback has helped shape the framework for the Review, and your voices will continue to be acknowledged, listened to and acted upon as the Review progresses.”