“Our child died because the doctors didn’t listen – Martha’s Rule will make sure the patients are heard.”

In the summer of 2021, just weeks before her 14th birthday, Martha Mills was on holiday in Snowdonia with her parents Merope and Paul and younger sister Lottie. On the second morning of her trip, while riding her bike back from the beach, Martha’s bike skidded on a patch of sand and she fell off the bike, one of the handlebars hitting her in the stomach. Driving forward, Paul had faltered on the same section. For the rest of his life, he says, he’ll wonder why he didn’t pull over and tell his daughters to get out.

It didn’t appear to be a serious injury, but in the middle of the night Martha was in significant pain and her parents took her to the hospital. They were told Martha likely had a ruptured pancreas – a serious injury but one that was constantly being treated in UK hospitals. She was taken by helicopter to King’s College Hospital in London, where there is a unit specializing in the treatment of young people with pancreatic trauma.

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

“Paul and I have placed Martha in the hands of experienced consultants and the young doctors they have worked with. It was a relief; it felt right. I started planning for Martha’s 14th birthday and the counselors said she would be going back to school soon.”

At King’s, Martha got an infection. It’s a known risk for an injury like hers, but as her condition worsened, Merope and Paul became concerned. You raised the possibility Sepsis – a life-threatening reaction to infection, also called septicemia or blood poisoning. Your concerns were ignored. The couple were told to “trust the doctors”.

When Martha started bleeding from her arm and stomach, they were told it was a normal sign of the body fighting infection. Martha’s high heart rate was dismissed as fear. As the August bank holiday approached, Merope expressed fears that if staff attendance was significantly reduced over the weekend, Martha’s infection would worsen and she would go into septic shock. Again she was overwhelmed with assurances. Martha developed a rash, a classic sign of sepsis, but it was dismissed as an allergic reaction.

“I had no experience of being hospitalized, other than having children,” says Merope.

“I had no idea how it worked, or the dynamics that can exist within a hospital, the internal cultural issues that are common to any workplace. There is hierarchy, internal competition, diverse people, some wonderful, some arrogant, some lazy, some on the way to retirement. All these people exist in a hospital. It’s important to be aware of this and to challenge the culture and people with whom you think you won’t be heard.

Projects in Martha's name will help other children live and thrive

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

“I’d like to say that everyone did their best for Martha, but I know that’s not the case at all. The external reporter said she was not even given a chance to live. We didn’t know who to contact, we didn’t have the language to say she had to go to intensive care [intensive care]. It feels so silly now to say we didn’t know that, but I didn’t know that.”

Since sepsis overwhelms the body, the brain can malfunction: Early Monday morning, Martha had a seizure in her mother’s arms. Afterwards, as Martha lay on the bed with her mother by her side and the night gathered around her, she turned to her mother and said softly, “It feels like it’s unsolvable.”

Although Martha met all criteria for immediate escalation to the ICU, she was not transferred. “Incredibly, the counselor on duty at home, who had failed to make a plan for her care that day, said ‘categorically’ that a potentially life-saving bedside visit by an ICU member should not take place – it would aggravate my health anxiety.” ‘ says Merope. “No doctor visited Martha overnight and after she went into septic shock, recovery was impossible.”

Martha was eventually transferred first to intensive care and then to Great Ormond Street. As doctors intubated her daughter and gave her a sedative, Merope kept saying, “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. A report later concluded that her death was avoidable.

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

Second opinions are currently largely at the discretion of physicians. The Martha Rule would ensure that patients and families are informed of their right to seek further opinions.

“We’re trying to give people a mechanism, a lever that they can pull so they have a gun in their armory if they think something is going wrong and people aren’t listening to them,” says Merope.

She and Paul are both journalists for The Guardian and the London Review of Books. They wrote movingly about their experiences. Not all parents have such a platform. But Martha is not an isolated case. In the two years since her death, her parents have heard many similar stories, including the case of Evan Smith, a man who called 999 from his own hospital bed because he felt he was not being heard.

An inquest 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 her death, but this was not disclosed to Merope and Paul. She was seen by inexperienced personnel. Liver specialists were reluctant to call an intensive care doctor to examine her for fear it might look like a “sign of weakness”.

Martha had talked about becoming a film director, engineer or author

Martha had talked about becoming a film director, engineer or author

In an independent report commissioned by King’s College Hospital, consultants noted a “litany of failures”. King’s has said it “deeply regrets” the oversights that led to Martha’s death and has made changes to its procedures, including mandatory sepsis training for its pediatric staff and a specially trained team who fell seriously ill children examined. Parents’ concerns are formally documented in electronic early warning charts and recommendations are made to step up care if parents remain concerned. Such institutional responses are part of a culture in which individuals, like the doctors who did not treat Martha properly, are shielded from the organization.

Part of the problem, says Merope, is the reverence we have for the NHS. “We were so grateful and trusting. We just had Covid and the conversation behind us [around the NHS] was very honored. That affects how pushy you can be. It’s difficult to be confrontational, not just with doctors but with everyone else. Nobody ever wants to have a fight. We’re trying to introduce something that formalizes the process when you feel like you’re not being heard, which doesn’t feel confrontational with people you have a debt to and gratitude for being the experts and being trained. You don’t want to be rude.

“I still support the core principles of the NHS. I just feel like cultural issues have surfaced and that empowering patients needs to be talked about.”

Merope says some medical professionals are instinctively suspicious of Martha’s period. They fear that patients will overuse it and put more strain on the healthcare system. However, there are several examples of similar regulations around the world, such as Ryan’s Rule in Australia and in some American hospitals. “In any case, parents should not overuse it. A small number use it appropriately, often to save lives. The objection is just another way of patronizing patients and telling them they don’t know when to call an emergency number, even though all the evidence suggests they do.”

Health Secretary Steve Barclay said the government is considering introducing the Martha Rule to improve patient safety.

Martha, who would have graduated from GCSE next summer, had talked about becoming a film director, engineer or writer. She was a bright, happy teenager, with a laugh that Merope describes as “a gift to the world, an invitation to be a part of what she found funny and the joy she found in life.” In addition to Martha’s Rule, the family, in association with the London Review Bookshop, created the Martha Mills Young Writers’ Prize, open to people aged 11-14 in the UK. Martha didn’t have a chance to live, but the projects in her name will help other children live and thrive.

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

Martha Mills lay on her bed with her mother by her side and felt it was too late for her. She thought she was “irreparable.” If her doctors and nurses had listened to her parents, she wouldn’t have.

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

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