‘Our child died because doctors didn’t listen – Martha’s rule will ensure patients are heard’

Misdiagnosed: Merope and Martha Mills
Misdiagnosed: Merope and Martha Mills
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In the summer of 2021, a few weeks before her 14th birthday, Martha Mills was on holiday in Snowdonia with her parents, Merope and Paul, and her younger sister Lottie. On the second morning of their trip, while cycling back from the beach, Martha’s wheel slipped on a patch of sand and she fell off her bike, one of the handlebars jarring into her abdomen. Cycling ahead, Paul had wobbled on the same section. For the rest of his life, he says, he will wonder why he didn’t stop and tell his daughters to get off.

It did not seem like a serious injury, but by the middle of the night, Martha was in obvious pain and her parents took her to hospital. They were told Martha likely had a ruptured pancreas – a serious injury but one treated all the time in UK hospitals. She was taken by helicopter to King’s College Hospital in London, which has a specialist unit treating young people with pancreatic trauma.

“When we arrived at King’s, I was relieved that Martha would be getting the best possible care: it was one of the few centres in the country for the specialist treatment of her bike injury,” says Merope, speaking to The Telegraph this week, on the day Martha would have turned 16.

“Paul and I put Martha in the hands of experienced consultants, and the junior doctors they worked with. It was a relief; it felt right. I began planning for Martha’s 14th birthday, and the consultants said she’d be back at school before too long.”

At King’s, Martha developed an infection. This is a known risk for an injury like she had, but as her condition deteriorated, Merope and Paul became concerned. They raised the possibility of sepsis – a life-threatening reaction to an infection, also called septicaemia or blood poisoning. Their concerns were ignored. The couple were told to “trust the doctors”.

When Martha started bleeding from her arm and abdomen, they were told it was a normal sign of the body fighting infection. Martha’s high heart rate was dismissed as anxiety. With the August bank holiday approaching, Merope expressed her fears that Martha’s infection would worsen and that she would go into septic shock when staff presence was markedly reduced over the weekend. Again, she was palmed off with reassurances. Martha developed a rash, a classic indicator of sepsis, but which was dismissed as an allergic reaction.

“I had no experience of being in hospital apart from having children,” says Merope.

“I had no idea how it operated, or the sort of dynamics that can exist within a hospital, the internal cultural issues, the sort that you are aware of in any workplace. There’s hierarchy, internal competition, different people, some of whom are wonderful, some are arrogant, some are lazy, some are coasting towards retirement. All these people exist in a hospital. It’s important to be aware of that and to challenge culture, and individuals where you think you’re not being heard.

Projects in Martha’s name will help other children live and flourish
Projects in Martha’s name will help other children live and flourish

“I would love to say that everyone did the best they could for Martha, but I know that is emphatically not the case. The external report writer said she wasn’t even given a chance to live. We didn’t know where to turn, we didn’t have the language to use to say she needs to be in ICU [intensive care]. It feels so stupid now to say we didn’t know that, but I didn’t know that.”

As sepsis overwhelms the body, it can cause the brain to misfire: early Monday morning, Martha had a fit in her mother’s arms. Lying on the bed afterwards, with her mother beside her, the night gathered around them, Martha turned to her mother and quietly said: “It feels like it’s unfixable.”

Although Martha met all the criteria for immediate escalation to ICU, she was not transferred. “Unbelievably, the duty consultant, at home, who had failed to draw up a plan for her care that day, said ‘categorically’ that a potentially life-saving bedside visit from a member of ICU shouldn’t happen – it would increase my anxiety,” says Merope. “No doctor visited Martha overnight and after she began to go into septic shock, no recovery was possible.”

Martha was finally transferred, first to intensive care and then to Great Ormond Street. As doctors intubated her daughter and gave her a sedative, Merope said, over and over again: “I love you”. It was too late to stop the septic shock. Martha died in the early hours of August 31, four days before her birthday. Her death, a report would later conclude, was preventable.

Working with the think tank Demos, Merope and Paul are campaigning for Martha’s Rule, a change in the law that would give every patient in hospital a right to a second clinical opinion from other experts at the same hospital.

At the moment, second opinions are largely at doctors’ discretion. Martha’s Rule would ensure patients and families knew about the right to ask for more opinions.

“We are trying to give people a mechanism, a lever they can pull, so that they have a weapon in their armoury if they think things are going wrong and people aren’t listening to them,” says Merope.

She and Paul are both journalists, with The Guardian and the London Review of Books. They have written movingly about their experiences. Not every parent has such a platform. But Martha is not a unique case. In the two years since she died, her parents have heard many similar tales, including the case of Evan Smith, a man who called 999 from his own hospital bed because he thought he wasn’t being listened to.

An investigation into Martha’s death found that the registrar misdiagnosed her rash because the doctor “went down a rabbit hole”. Martha had severe sepsis six days before she died, but this was not conveyed to Merope and Paul. She was seen by inexperienced staff. Liver consultants were reluctant to call an intensive care doctor to see her for fear of it looking like a “sign of weakness”.

Martha had spoken about becoming a film director or an engineer or a writer
Martha had spoken about becoming a film director or an engineer or a writer

In an independent report commissioned by King’s College Hospital, consultants found a “litany of failures”. King’s has said it is “deeply sorry” for the failings that led to Martha’s death and that it has made changes to its procedures, including mandatory sepsis training for its paediatric staff and a specially trained team that reviews seriously unwell children. Parental concerns are formally documented on electronic early warning charts, recommending escalating care if parents continue to be concerned. Such institutional responses are part of a culture where individuals, like the doctors who failed to treat Martha properly, are shielded by the organisation.

Part of the problem, Merope says, is the reverence in which we hold the NHS. “We were so grateful and trusting. We’d just come out of Covid and the conversation [around the NHS] was very much of veneration. That affected how pushy you feel you can be. It’s difficult to be confrontational, not just with doctors but with anyone. Nobody ever wants to have an argument. We’re trying to introduce something which formalises the process, if you feel you’re not being heard, which doesn’t feel confrontational to people you feel indebted and grateful to, because they are the experts and they are trained. You don’t want to be rude.

“I still support the foundational principles of the NHS, I just feel that cultural issues have sprung up and there needs to be a conversation around giving patients more power.”

Merope says some medics are instinctively wary of Martha’s Rule. They fear patients would overuse it, putting more strain on the health service. But there are several examples worldwide of similar provisions, such as Ryan’s Rule in Australia and in some American hospitals. “In all cases, parents don’t overuse it. Small numbers use it appropriately, often to save people’s lives. The objection is just another way of patronising patients and saying they don’t know when to use an emergency number, when all the evidence suggests that they do.”

Health Secretary Steve Barclay has said the Government is considering introducing Martha’s Rule in a bid to improve patient safety.

Martha, who would have sat her GCSEs next summer, had spoken about becoming a film director or an engineer or a writer. She was a bright, happy teenager, with a laugh Merope describes as a “gift to the world, an invitation to be part of whatever she was finding funny and the joy she was getting out of life”. As well as Martha’s Rule, the family have introduced the Martha Mills Young Writers’ Prize, in conjunction with the London Review Bookshop, open to people in the UK aged 11-14. Martha was not given the chance to live, but the projects in her name will help other children live and flourish.

“We talk about her every day,” Merope says. “We miss her every day.”

Lying on her bed with her mother at her side, Martha Mills sensed that it was too late for her. She thought she was “unfixable”. If her doctors and nurses had listened to her parents, she would not have been.

For more information on the Martha Mills Young Writers’ Prize, visit the London Review Bookshop

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