Joan RittleWest Midlands Health Correspondent in Shropshire
BBCWhen Kayleigh Griffiths lost her baby daughter Pippa in 2016 to a failed birth in Shropshire, she had no idea how many times she would have to recount her traumatic story at future doctor visits.
She worked to incorporate what she called the “Ockenden Alert” into her medical records, an idea that arose during meetings with other traumatized families.
Donna Ockenden is a senior midwife who led the 2022 NHS Trust (Sath) review of Shrewsbury and Telford Hospitals, which found more than 200 babies and nine mothers could have survived with better care.
Ms Griffiths wants the warning to reach more affected families and ultimately people across the country.
She said that means health care workers “can see this warning and understand what it means for us.”
“And that might just mean that they take a little extra time to read our notes to understand what our story is so that we don't have to repeat the same story at every appointment because that's re-traumatizing,” she added.
Pippa was her second daughter. She died from an infection, group B streptococcus. A coroner ruled in 2017 that her death was preventable.
At the time of the investigation Mrs Griffiths was pregnant with her third child, who is now eight years old.
When she gave birth to him, he was temporarily taken to the neonatal care unit, but she was not told this before he was taken to him. She said it was “very painful to see him like that.”
Fortunately, he was fine. But Ms Griffiths said “having this warning in our records would probably have stopped the whole thing because at every stage of our treatment people would have known that we had already been through a lot.”
The Rev Charlotte Cheshire also has a warning about Ockenden in her records and is waiting for it to be added to her 14-year-old son Adam's records.
Adam received multiple disabilities after being infected. Ockenden Review 2022 found that 94 children like Adam suffered life-changing injuries.
Reverend Cheshire has to make frequent doctor's appointments with Adam, who has autism, due in part to his profound learning difficulties and hearing and vision impairments.
Before the warning was added, she often had to retell the story of how he failed.
“In a situation where medical malpractice and birth harm are found, it means going back to the trauma every time, and I truly believe that if they are seeing us, if they are treating us, they need to at least know the big picture,” she said.
“Nothing can undo the harm done to us, but this was not just a moment in time that fades into history.
“This is harm that will stay with me and Adam for the rest of our lives, so it's important that they know, 'Oh, this is one of those families that is carrying a very complex level of trauma,' and they had no choice but to entrust our medical care to another doctor, despite everything we've already been through.”
Ms Griffiths is also pushing for other improvements in Shropshire, including a study of how doctors in training learn about baby loss.
She also wants to make medical records alerts available to others.
“We know nationally that there is a problem with maternity, so other people may have something similar to this warning in their records,” she said.
“We could try to implement this in other services. People have such varied experiences, sexual violence, mental health. This could be spread so much wider that [it] makes it easier to care for people.”
Joe Williams, group chief executive of Sath, said: “The warning is available to any family member affected by Donna Ockenden's independent review of maternity services. We hope to eventually expand the warning to other areas of care within our organization and beyond.
“We will listen and learn from families, with the support of Donna Ockenden, as we strive to provide excellent maternity and newborn services.
“We hope the warning will lead to positive, lasting change.”
Information on how to add a warning to victims' notes can be found here.
