‘We’ve been ignored again’ say parents at failing maternity unit

Martin Shipton

Parents campaigning for improvements at a failing maternity unit say they have been excluded yet again from a review aimed at improving its performance.

In September 2023 a Healthcare Inspectorate Wales inspection report concluded that the safety and wellbeing of mothers and babies could not be guaranteed at the Singleton Hospital unit.

Monitoring of the unit was subsequently intensified.

The Welsh Government has refused to order an independent public inquiry into the failings, although Swansea Bay University Health Board (SBUHB) has commissioned a review that has been plagued with problems. The original Chair of the review lost the confidence of parents and resigned. A new Chair has been appointed, but the review still hasn’t got off the ground.

Rob and Sian Channon, whose five-year-old son Gethin suffered a catastrophic brain injury at birth because of negligence in the unit, is a spokeswoman for the parents’ campaign.

Leak

The group has had leaked to it a recent email thread involving the engagement review lead and a health and social care consultant, with members of a newly established “family and community voices” also included.

Mrs Channon said: “It is inconceivable that the family and community voices group contains neither families, community groups, nor BAME representation, which we have been raising as an issue from the outset, and no clear plan as to how communities will be reached.

“Eight months into this review we are saying the same thing we did at the outset. Where is the impartiality, where are the staff we can trust, where is the representation, and where is the justice for Swansea’s mothers and babies?

“It is worrying that the new engagement lead is lauding her credentials with the Care Quality Commission which [UK Health Secretary] Wes Streeting has stated is a failing organisation. This does not inspire confidence, neither does the fact that her first thought is to engage with consultants rather than families. That they have the mendacity to call themselves a family and community group is offensive: they are complicit in the entire scam that is the Swansea Bay maternity review.”

The parents’ campaign has also been angered by what it sees as the unilateral alteration of the terms of reference for the review.

Mrs Channon said: “Despite continual requests for the review to be opt out (whereby all families would be written to within the original five year period and given the option to opt out of inclusion in the review), the health board stood fast to a five year opt in review. Now, the health board has covertly changed the terms of reference yet again. “The new system means only cases in 2022 will be proactively reviewed, and any other family can refer themselves in if they feel they should be included. Many families, including ours, were told that there was in fact no issue with the maternity care provided, that sadly sometimes you just get unlucky. In fact, we now know, after five years of fighting, that there were grievous errors made in my care and my babies’ care.

“These changes have been made to exclude families, hide failings and show an unmitigated disregard for the harm caused to families. This review has been mismanaged from the outset by one chief executive and Chair of the health board. It is time for the new chief executive and Chair to admit the vast failings and put an end to it. It is time for the Welsh Government to act and stop the health board from continually perpetuating the harm caused through its almost daily, heartless manoeuvering.”

Llais Cymru

Mrs Channon also shared an email she had received from the independent statutory body Llais Cymru, which was set up by the Welsh Government to give the people of Wales more say in the planning and delivery of health and social care services. Unlike the families, Llais was included in the email thread previously quoted. The email from Llais to Mrs Channon said: “Llais are not a proxy for the involvement of families and communities. We can advise on best practice in relation to involvement and engagement but we are not a substitute for those with lived experience.”

Setting out the health board’s position in a recent email to members of the Swansea Bay Maternity Support Group, its Chair Jan Williams stated: “Firstly, I wish to apologise. The Independent Review of Maternity and Neonatal Services has taken too long to get underway.

“I hope that this letter will reassure you that the health board is fully committed to supporting the review team as it makes up for lost ground, and to the full involvement of families and related support groups. I have discussed this with the Interim Chair of the oversight panel; she is making this a priority and Llais will also work alongside to provide support.

“We all want to learn everything that we can from the review process, to ensure that services are safe, effective and patient-centred. I hear your concerns about the review, but, from my perspective, the delays that would result from closing the current review and starting again would mean even more time elapsing before we get the answers that we all want.

“However, I agree that families must be at the heart of the review, and the health board will make support available to help people come forward.

“We understand that sharing experiences can take its toll, so we will be making external, independent support available for those families who would find it helpful.

“There will also be an opportunity for families to self-refer if they have had experiences they wish to share, and want them included in the independent review, even if outside the scope of the records selected under the review’s published terms of reference. Arrangements to self-refer will be published for families on the review website in the week commencing September 9 2024.”