The little boy saving lives every day

Back in July last year I spoke to Merope Mills, a journalist who has been campaigning for Martha’s rule – a scheme that gives patients and their families access to a second opinion if their condition worsens when they’re in hospital.

The rule is named after her daughter, who died aged 13 after a cycling injury led to sepsis. Along with her husband, Paul, Merope got Martha’s rule piloted in more than 140 hospitals in England. Early results are really promising – I’ve got more on this later.

First though, I want to share more about the scheme that served as a forerunner for Martha’s rule. It was developed 10,000 miles away, on the other side of the planet.

The picture is all dark eyes, shiny cheeks and a cute, wide smile that you reflexively can’t help but grin back at in response. The little boy’s face can be seen throughout public hospitals in Queensland, Australia: on posters, leaflets and even the hospital’s video system.

What they came up with was straightforward, with just three steps. First, if you were worried, you could speak to the nurses and doctors treating the patient. If you weren’t satisfied after this, you could go to the nurse in charge of the shift. They would review the patient and potentially escalate it to the medical team. If you were still not happy, you could call a number and request a “Ryan’s rule” clinical review.

“It’s a system that was very much set up to empower patients to get an independent clinical review if they weren’t satisfied with the response of their existing clinicians,” Shaune Gifford told me. Shaune works in the department for patient safety and quality at Queensland Health and was involved in the development of Ryan’s rule.

Across Australia, healthcare facilities had to show that they had a system in place for patients and family to raise concerns, in order to be accredited. The clever part for Queensland, though, was getting state-wide agreement that every hospital would use the same phone number, rather than all doing their own thing.

Fears that the phone lines would be overwhelmed were unfounded. Shaune said there are about eight calls a day at the moment, and stats for 2023 show that fewer than 1 in 600 patients make a Ryan’s rule call.

For about a half of these patients, the call leads to a change in their care. That could be different medication, getting further investigations, being transferred to ICU or even moved from a small hospital to a bigger one.

And for the half whose care doesn’t change, there are still lessons to learn. Kirstine Sketcher-Baker, executive director for patient safety and quality for Queensland Health, explained: “We had a few clinicians, particularly more so in the early days, that would say, ‘It’s just communication issues’ or ‘they’re making a complaint’. And this was still really important, because it’s key that the patient and their family understand what’s happening.”

In one case, a particular team was triggering Ryan’s rule calls about communication. The team reflected on it and then decided that they could try something new, and began asking each patient if they had any questions after the doctors had finished their physical review and when the nurses did their shift handover. It’s a simple idea, but one that can transform a patient’s experience for the better.

I asked Kirstine and Shanue if having a face and name linked to the rule helped. It’s a nuanced issue.

“I think there’s a lot of pros and cons with all of this,” Kirstine said. “I think it can be really challenging when you have another family later on who might experience something very similar, and they then actually want to see their family member named and promoted in honour.”

Another challenge, she said, is that people don’t always recognise that the rule is for any age group – not just children.

The emotional impact of having Ryan’s picture and name so prominently involved in the campaign is also double-edged.

“You can’t look at that photo of that little boy without people thinking, ‘Oh that’s a tragedy’, … This little three-year-old guy died when he shouldn't have died,” said Shaune. “I know there were some clinicians in some facilities who were saying, ‘I think it’s going to scare our patients because this little guy didn’t actually die in our facility’.”

Shaune explained that the point of the campaign was to say that while, unfortunately, these things sometimes happen in the healthcare system, they want to give patients and families the right to raise the alarm if they’re concerned.

“We’re not putting it out there in a vacuum,” Shaune said. “We're putting it out with potentially a solution to support you … People digested that over time.”

Shaune says that what Ryan’s family wanted was to make sure no one went through the same trauma. They’re lovely people, he told me.

“They were very happy to support us and showed an interest in the fact that the scheme was being expanded and rolled out,” he said. “And then when things happened in the media … it was positive that there was a positive outcome.

“We’ve been very cognisant of the fact that every time we have dialogue or communication with them, we are, in a sense, probably re-traumatising them as well. So, we just try to keep them up to date ... it’s ad hoc and friendly and informal.”

The pamphlets, posters and other materials that explain Ryan’s rule are available in 10 languages. The team behind the scheme is working with First Nations groups to try and make the information more culturally appropriate and relevant to these communities, who are not using Ryan’s rule as much as they might.

“First Nations people across the world have understandable issues with trusting governments,” Shaune told me. “I think one of the other underlying anxieties sometimes with that population is that if they do raise [a concern], are they going to be treated negatively because of it?”

The team has built a state-wide network of Indigenous liaison officers who can work closely with families to help them log any worries and help them with the first steps of Ryan’s rule.

In the 2011 inquest into Ryan’s death, Dr John Wakefield, then-head of patient safety and quality improvement at Queensland Health, said: “We can’t bring Ryan back but we hope the changes made since his death will honour his memory.”

It certainly seems like they have.

Back to England now, where early data from the pilot of Martha’s rule has been released. The news is positive, with the scheme already saving lives. Nearly 600 calls were made in September and October last year, across some 140 hospitals. About half of the calls led to a clinical review, and a fifth of these reviews led to a change in the patient’s care.

Fourteen calls resulted in a patient being moved to ICU – the change Martha’s parents so desperately wanted for their daughter. When we spoke last year, Merope told me “telling Martha’s story was the one bit of power that I had when I’d been completely powerless before”. Now that power is saving lives.

As always, if you’ve seen a story that’s changed the world – like Ryan’s, like Martha’s – I want to hear about it.

Until next week!