The chair of a major review into Nottingham hospitals' maternity services says she underestimated 'how deep the distrust' was of the trust which runs them. Donna Ockenden, who is leading the probe following preventable deaths and harm at the maternity units at City Hospital and Queen's Medical Centre, said the uptake of a letter sent to 1,377 families was "very poor".
The letters were sent by Nottingham University Hospitals (NUH) Trust at the end of November and the end of January to families who had experienced tragedies such as stillbirths and neonatal deaths. However, just 360 have responded so far.
Ms Ockenden said the review would need to do something "radically different" to increase that number. Due to the low uptake, a group of bereaved families have urged NHS England to allow the review to adopt an 'opt-out' approach, which would automatically include the cases of all 1,377 families unless they said otherwise.
Families wishing to contact the review can do so by emailing nottsreview@donnaockenden.com or by filling out an online form here
This approach was used in Ms Ockenden's previous review in Shrewsbury and Telford, which included more than 95 percent of affected families. At a meeting with NUH chair Nick Carver and chief executive Anthony May on Tuesday, May 23, some families said when they received their letter, they felt unable to open them as they were "scarred" by previous NUH correspondence they had received.
Jack Hawkins, who along with wife Sarah lost their baby Harriet after she was stillborn due to errors in care, said switching to an 'opt-out' approach would make the review more "powerful". He said: "There's a variety of reasons they aren't able to do that (opt-in), because of how damaged they've been and the ways they have been communicated with.
"There are families in our group that have met MPs and all sorts but not opened their letters because letters from NUH in the past have been so appalling and damaging." So far, 1,266 families have contacted the review team themselves directly and, to date, 674 of these have given consent to join it.
Just 25 percent of families have replied to the letters, with just 10 percent of black women and five percent of Asian women responding. "The numbers in the review would be far far higher and the views would be representative of multicultural Nottingham," continued Mr Hawkins.
"It will not just be more powerful but have all the information to help the hospitals improve. "[Families] have got nothing to lose, the information will help other families and even themselves - we've found it quite useful taking part."
Ms Ockenden said she had underestimated "how deep the distrust was" in NUH. "Overall the response rate is really disappointing but when you compare the different ethnicities to that the findings are very very stark," she said.
"We're going to need to work differently, we're going to need to do something radically different because a review based on such low response rates is not going to be credible at all. There are too many gaps in our knowledge.
"This cannot be another review where communities say 'here we go again, we haven't been listened to and our voices haven't been heard'. Black and Asian women have a much higher risk of baby death, stillbirth, severe harm and even maternal death than women of white ethnicity.
"We know that Nottingham has got really rich diversity as a city, we also know that deprivation will play a part because some wards have areas of significant deprivation, we've got to make sure the review doesn't leave those voices behind."
She said some women she had spoken to felt physically unable to open the letters. Ms Ockenden added that this was made harder by the fact letters were only written in English, contained complex legal language and were addressed impersonally as 'dear madam'.
"The covering letter went out by the trust and I don't think I appreciated at that early point in the review how deep the distrust was in the trust as regards to so many of the local communities," she said.
Families wishing to contact the review can do so by emailing nottsreview@donnaockenden.com or by filling out an online form here
Staff can contact the review by emailing staffvoices@donnaockenden.com
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