A group of bereaved families are calling for changes to the Nottingham hospitals maternity review so it can automatically access families’ medical records.
Midwife and healthcare expert Donna Ockenden is running a large-scale review into care at Nottingham University Hospitals Trust (NUH), where maternity units are rated ‘inadequate’.
So far, 1,266 families have contacted the review team themselves directly and to date 674 of these have given consent to join it.
But Ms Ockenden has raised concerns about the “very low” response rates from families involved in the most serious cases who were sent letters from the trust.
She said the review team needs to have a “radical rethink” about how to move forward with the process.
Currently, the review is operating under an ‘opt in’ structure, meaning families must respond to NUH giving their consent to join it.
But in another large-scale maternity review run by Ms Ockenden in Shrewsbury and Telford, families had to ‘opt out’ if they did not want to take part in the review, meaning they are automatically included if they do not state otherwise.
The Nottingham trust wrote to 1,377 families at the end of November and the end of January.
The letters went to families who had experienced stillbirth, neonatal deaths, brain damage to the baby, harm to mothers or relatives of mothers who died.
But only 360 families have responded to these letters.
In total 28 per cent of white women have responded, while 10 per cent of Black women and amongst Asian women, the response rate is five per cent.
Ms Ockenden has raised concern over the “very stark differences” between the response rates from different ethnicities.
It comes after a number of families met the trust’s Chief Executive Anthony May and Chair of the board Nick Carver on May 23.
The families asked for a public apology and accountability from the trust board for failings in maternity services.
Following the meeting, the families have also asked the Department of Health, NHS England, Mr May and Mr Carver to agree to change the review from ‘opt in’ to ‘opt out’.
Ms Ockenden’s previous review in Shrewsbury and Telford included more than 95 per cent of affected families.
In Nottingham, only around 25 per cent of families known to be affected have been included in the review.
Ms Ockenden said: “As it stands, with our 674 families who have joined the review, I can’t say as the chair we have anywhere near a representative sample of the rich diversity that we know exists in Nottingham.
“There is significantly more work to do.”
She said if the review cannot get a representative base, “women and their families are almost certain to say ‘here we go again, another review and our voices haven’t been heard’ .“
She added: “A big part of this review was about the trust learning and improving.
“You cannot say in the tiny number of women that have come forward that we have enough to learn.
“We need a radical rethink about how we ensure that women from all communities across Nottingham feel confident to come forward.
“As the chair, I will only work to the highest standards.”
It comes after Ms Ockenden sent a letter to NUH expressing her concerns with the way Black and Asian women were being treated within maternity services.
She said: “I wrote recently to Anthony May expressing my significant concerns about the feedback I’d had from various communities on the ground.
“We are working in a very difficult background of long-term mistrust of the trust.
“After the letter was published we had a number of trust staff come to us to say the letter was 100 per cent right.
“They said they’d been trying to raise the issues with senior managers for some time internally but they hadn’t been listened to.
“I have no doubt that the trust is taking this really seriously.
“But you have to ask yourself why did it take me to come into Nottingham to talk to local women, for me to feed it back to the trust?
“I came to Nottingham for the very first time in my life on September 1 and yet here is me telling the trust what their local women are saying has to improve.”
The review was originally intended to last for 18 months from September 2022.
Ms Ockenden added: “It took us months to develop from scratch our data collection tool. That is up and running now.
“At the moment there isn’t an official change to the timeline but as soon as we know a revised timeline we will keep everybody informed.
“Families are saying they want the work to be done properly and well.”
The Department of Health, NHS England and NUH have been contacted for comment.