Dozens of families say they have been forced to launch their own inquiry into a troubled maternity care service after being shut out by an NHS review.
More than 70 families who claim they were harmed by maternity care in Swansea are set to launch a “family-led” maternity review after they lost faith in an inquiry commissioned by Swansea Bay Health Board.
Leading maternity safety expert, Donna Ockenden warned the Health Board had “failed” families and that the current review would be “worthless and meaningless” without their engagement.
The warning comes after a House of Lords Committee said public inquiries keep “failing” as there is no obligation on the government to implement their recommendations.
Swansea Bay University Health Board in Wales announced it would commission an independent review into its maternity and neonatal services following concerns raised by families over deaths and injuries to babies during birth and by women who have suffered traumatic births due to alleged poor care.
Dozens of Welsh parents have spent years campaigning for a review into failings in the maternity unit.
However, nine months on from the review announcement, those families now feel they have been ignored by the review’s key staff and believe the process is not independent of the health board.
Rob and Sian Channon lead the Swansea Bay Maternity Campaign Group. Their son, Gethin, was born in March 2019 at Singleton Hospital, and due to multiple failings by the maternity service, he now suffers from quadriplegic cerebral palsy, a severe disability that requires care 24 hours a day.
There were complications during his birth, due to him being in an abnormal position that prevented normal delivery, and he was eventually born via caesarean section.
An independent review by Dr Bill Kirkup in 2022 into Gethin’s care, found several failings and revealed the hospital tried to “downplay” the mistakes it made.
Mr Channon told The Independent: “We lost faith months ago.”
This came after families felt ignored by those directing the review including the former chair who declined to meet with families directly.
He said: “We’ve just become really angry that we’re having to do this now. We can’t let what happened to Gethin happen to others. I’m furious, I’m sickened about this, I’ve been dealing with this since December, we didn’t want it it’s not our job to fix that maternity unit.”
In a statement, the Swansea Bay Maternity Campaign Group said the current review has been entirely reliant on the health board for funding and so cannot be truly independent.
It said: “For nine months members of the Swansea Maternity Support Group have battled for a fair and truly independent Maternity Review. We have decided on a new, family-centred honest approach to the failures which will be presented to the Secretary of State for Health and Social Care, the Welsh NHS, Swansea Bay University Health Board, the coroner and local elected officials.”
The families will aim to publish their review in early 2025.
In 2023 Donna Ockenden, who chaired the Shrewsbury Maternity Inquiry, was asked to take over an independent inquiry into Nottingham University Hospital Foundation Trust after families campaigned for her to replace the former chair.
Ms Ockenden told The Independent: “I am absolutely clear that for any review to be credible it must have the trust and confidence of affected families. The Swansea Bay Health Board have failed to achieve this and failed to engage effectively with families. Families who have already been so badly affected have had their harm and distress compounded by the way they have been treated.”
She said the Welsh Government should be talking directly to families.
“This is happening because the local Health Board have failed to listen to the concerns of local families. For this situation to have been allowed to happen, for families to be so completely disregarded in 2024 is completely unacceptable.”
James Titcombe, who campaigned for a separate major inquiry into failing at Morecambe Bay Hospital after his son died, told The Independent: “There is very clearly a need for a fully independent inquiry to examine these events, but this must put the needs, experiences and wishes of the families affected at the absolute front and centre.”
In September, Ms Ockenden warned the Conservative Government in England had failed to implement the recommendations from the Shrewsbury Maternity Inquiry and had “fallen asleep” at the wheel.
The concern over Swansea comes as 18 inquiries are currently underway across the UK, according to the Statutory Inquiries Committee.
The Lords-led committee published a report earlier this year warning: “Too often inquiries are failing, chiefly because when they report there is no obligation on government to act. It doesn’t have to give reasons for rejecting recommendations.
“And if it says it accepts them, there is no systematic means of monitoring implementation. Inquiries cannot themselves pursue government because the moment they report, they cease to exist. Hopes raised by the outcome of an inquiry can be dashed by government inaction.”
A Swansea Bay University Health Board spokesperson said: “From the outset, we have been clear that individuals and families need to be at the heart of the Independent Review. That’s why the Review has used a number of different ways of engaging with families, directly and indirectly, that have already resulted in a wide range of valuable input.”
It said the review has been and continues to be supported by supported by Llais – the official and independent patient advocate body for Wales.
It said the review will be in a “strong position” to report findings next year and identify improvements.
A spokesperson of the Maternity & Neonatal Independent Review for Swansea Bay said: “Swansea Bay Health Board has put the focus on women and their families at the heart of the Independent Review into Maternity and Neonatal Services.
“The focus on the needs, experiences and views of all families are front and central to the Independent Review’s approach and are part of our Terms of Reference.”
It said the clinical review of cases is underway, although did not confirm how many and that its family and community voices steering group has met three times to plan how families are best included.
The statement added the review will be open to hearing from any family or individual and claimed several families have had 1-2-1 meetings.