Watchdog backs parents’ concerns over review into failing maternity unit

Martin Shipton

The body set up by the Welsh Government to provide a voice for NHS users has strongly criticised the way a review into a failing maternity unit has excluded parents.

Healthcare Inspectorate Wales (HIW) concluded in September 2023 that the safety and wellbeing of mothers and babies could not be guaranteed at the unit in Swansea’s Singleton Hospital. 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 what it describes as an independent review.

Now the regional director of the NHS users’ body Llais Cymru has written a toughly worded letter to the health board’s interim chief executive Dr Richard Evans setting out the organisation’s concerns about the review.

Disquiet

Mwoyo Makuto writes: “I am acutely aware of the current level of disquiet and will therefore ensure that these are shared as expediently as possible in order to attempt to reassure and reduce the current level of concerns and distress. The intervening period since my letter, however,has resulted in additional and increasing concerns in a number of areas. There are now increasing concerns from families that not only are they not being included, heard and listened to, but that they are being excluded from meaningful participation in the review.

“The families have struggled to sway Niche Consultancy, commissioned by yourselves, to design the Families and Communities Participation Group in a way which would meet their needs and express clear dissatisfaction in this regard.

“Similarly, with respect to the Terms of Reference feedback that Llais submitted to Niche, our request for the company to share with us how people’s feedback had been taken on board in producing the finalised version, was not formally responded to.

“Instead, we were signposted to the Review’s website where that information had been posted, denying us an opportunity to raise any further issues prior to publication.”

Withdraw

Ms Makuto goes on to set out commitments that had previously been made to fully involve families in the review. She states: “Llais and the families we represent are not persuaded that the current approach to the review accords with the requirements set out above. As a result, the families that we have been meeting with have requested that Llais withdraw our cooperation from the review. There is a lack of confidence in the review as set out and a critical lack of credibility for Niche in achieving inclusion and engagement, their stated brief.

“Nevertheless, Llais would rather find a way of achieving genuine person-centred engagement and ensure that this is at the heart of the review. One consideration would be to re-commence the work that is currently being led by Niche to achieve a position whereby this is jointly led and appropriately informed by families and communities; we could then genuinely achieve a Family and Communities Group, with input from independent “specialists”, viz a viz Niche. We would welcome a discussion on this with yourselves in the first instance.”

Ms Makuto concludes: “Urgent action is now needed if public confidence is to be restored in some way.”

Brain injury

Sian Channon’s five-year-old son Gethin suffered a catastrophic brain injury at birth because of negligence in the unit. She and her husband Rob have been lead spokespersons for the parents’ campaign group. Mrs Channon said: “Llais Cymru is the organisation legally mandated by the Welsh Government to be the ‘patient voice for Wales’. Several members of our group have been working with Llais Cymru for months to push for a fair, independent and family inclusive review.

“Their letter to Swansea Bay University Health Board is a stark reminder of how many serious issues remain with the review. It also shines a light on how the health board has failed to adequately address feedback from Llais on two areas they have raised previously.

“These are problems that families have been highlighting to the health board since the review was announced over 260 days ago. Not a single thing has changed to address any concerns.

“Llais Cymru also broaches the increasing concerns from families that we are still being ignored. How many times and how many ways does this have to be raised before SBUHB address it?

“Llais Cymru are also critical of key review participant Niche Consulting, which was appointed by the health board without consultation with families. Rather than contribute productively Niche are repeating the same mistakes made in the past nine months. Niche Consulting must be removed.

“With this major intervention from Llais Cymru surely the Welsh Government who provide their mandate need to step in and finally end this farce.

“Llais Cymru finish their letter with ‘Urgent action is now needed if public confidence is to be restored in some way.’ Families believe this point was passed over six months ago. It is time to follow the recommendation of [leading maternity expert] Donna Ockenden. Scrap it. Do not throw good money after bad. Reviews are expensive and almost £200k has been wasted at a time when funds are low. A new independent review akin to those run by Dr Bill Kirkup and Donna Ockenden must begin. However these individuals are persona non grata in Wales as they tell the stark truth.”

Minutes

Meanwhile the parents’ group has had leaked to it the minutes from the first “Family and Community” group meeting held on August 2.

Mr Channon told Nation.Cymru: “This is really interesting for several reasons. No families were told at this point that this group even existed, yet here they are having a meeting of it. No families invited etc.

“The managing director of Niche Consulting gave an apology for the ‘slow process of getting review off the ground’. This was eight months after the review was announced and the apology was not made to families. Terrible.

“They wanted to agree an initial terms of reference in the meeting, without any families having a say. Bear in mind this is a family group.

“There is no mention of any consultation with BAME groups. We have raised for months that they have ignored them and they still are today.

“Just to reiterate when they had this meeting they had told no families it even existed. Not one person at the meeting said it was inappropriate for it to take place without families.

“The review is a shambles, a scam and it has failed already. Everyone is furious, including Llais as you have seen from the letter.”

The health board has consistently maintained its intention is that parents should be involved in the review.