How the death of Martha Mills sparked a movement for change

Good morning. Martha Mills, a sunny girl who dreamed of being a writer or an engineer, should have celebrated her 16th birthday last week. Instead, two years after a bike accident ended in her avoidable death in hospital, her name was read out by the health secretary in parliament as he told MPs the government was considering a new NHS policy in her memory.

Her mum, Merope Mills, editor of the Guardian’s Saturday magazine, usually works behind the scenes, commissioning and editing the words of others. But after Martha died in harrowing circumstances after a series of “unforgivable hospital errors”, Merope and her husband, Paul Laity, decided to go public with their grief, channelling it into preventing others from being placed in the same terrible position.

Last week, the couple launched a campaign along with Demos, a thinktank, to push for the introduction of Martha’s Rule. This would give hospital patients and their families the right to trigger an urgent clinical review from a different medical team if they are deteriorating rapidly and feel they are not getting the care they need.

I talked to Merope for today’s newsletter about how the campaign has gathered steam in its first week and what it is like for a personal tragedy to result in possible public policy change.

First, the headlines.

Five big stories

In depth: ‘Our campaigning is having an impact, but we shouldn’t have to do this’

Martha Mills died in 2021 a few days before her 14th birthday after falling off her bike on a family holiday in Wales. The handlebars damaged her pancreas and she contracted an infection in King’s College Hospital in London, deteriorating rapidly over the August bank holiday weekend. An inquest last year found Martha would probably have survived if doctors had identified the warning signs and transferred her to intensive care earlier, listening to her parents’ concerns.

A surprise intervention

Merope Mills was visiting Martha’s grave last Monday when she received a text saying that Steve Barclay, the health secretary, had raised her daughter’s case in the House of Commons.

He told MPs he was considering introducing Martha’s Rule, a new three-step process for hospitals, which would allow patients or their families to request a clinical review of their case from a doctor or nurse “if their condition is deteriorating or not improving as expected”.

Despite having launched the campaign that same day, Merope wasn’t expecting the news, and felt mixed emotions. “Obviously I was pleased that our campaigning is having an impact, but I always just think we shouldn’t have to do this. I wish Martha was alive, I wish she was enjoying her birthday, I wish she was hanging out with her sister. So I can’t simply say I am pleased because it is weighted with such heartache and horror.”

Barclay’s intervention followed that of Wes Streeting, Labour’s shadow health secretary. He had heard an interview Merope gave to BBC Radio 4’s Today programme that morning, and announced that Labour would provide cross party support for Martha’s Rule, and would enshrine it into the NHS constitution if they win the next general election.

From private grief to public campaigning

Merope says she knew “instantly” after Martha died that she wanted to write about it, pouring her emotions into an incredibly moving piece for the Guardian’s Saturday magazine last September.

“I wanted to tell the world not just about her, but also about what happened – because it was so shocking to me, to us, that it could happen. I’m trying to give a voice to all the many people who have had similar experiences, and who haven’t been able to tell their stories, and try to make some change on all of our behalf,” says Merope.

Lessons from Australia

Nothing could bring Martha back, but Merope and Paul resolved to try to ensure that what happened to her – a healthy 13-year-old who loved life and had vast promise – never happens again.

An idea for how to do this came from Guardian readers in Australia. “Lots of readers contacted me and said, ‘we have this thing here called Ryan’s Rule. It might have helped save Martha’s life, you should campaign for a Martha’s Rule,” says Merope.

This excellent piece by Joe Hinchliffe in Brisbane explains how Ryan’s Rule works, by providing a dedicated phone number for patients and their families to call if they are deteriorating and want a second medical opinion. It was introduced in Queensland in 2013 after two-year-old Ryan Saunders died after being misdiagnosed with mumps – he had in fact contracted an undiagnosed streptococcal infection, which led to fatal toxic shock syndrome.

What next?

Steve Barclay has agreed to meet Merope, and she hopes Martha’s Rule will be introduced as soon as possible. She was discouraged by the NHS’s initial, rather defensive and “disingenuous” response, which said patients were already entitled to a second opinion.

“It didn’t really engage with the substance of what I am suggesting, or understand that it is intimidating to challenge the care you are getting in hospital. You feel like a nuisance. And it is certainly not made easy to access a team other than the one that are looking after you,” she says.

Merope stresses that experience around the world has shown that these processes are not abused by patients.

Royal Berkshire NHS Trust has operated a policy for more than a decade called Call 4 Concern. Results from its pilot year, in 2009/2010, suggested the telephone number was not overused, with referrals representing just 0.5% of total clinical care outreach activity. Two of those calls required critical intervention and readmission to intensive care, suggesting lives were saved.

Until such a time as the government brings in the policy change, Merope asks for people to write to their MPs and local hospitals to ask them to support Martha’s Rule. “This doesn’t have to take years, if people believe in it,” she says. “What we are really asking for is trust: trust from the NHS and doctors that we won’t overuse it, and to reciprocate the trust that we have placed in the system and in them in the past.”

What else we’ve been reading

Rachel Cooke interviewed Andrew Scott, pictured above, about his one-man play Vanya, which is a new version of Anton Chekhov’s Uncle Vanya. Cooke asked Scott how he ended up in such an experimental production playing nine different characters and why he’s excited at the prospect that people might not like it. Nimo

“I was asleep when the earthquake struck. I could not escape because the roof fell on me. I was trapped. I was saved by my neighbours who cleared the rubble with their bare hands.” Peter Beaumont hears from survivors of the earthquake in Morocco about the terrifying events on Friday. Toby Moses, head of newsletters

Jonathan Barrett and Josh Taylor take a look at the measures chains are taking to curb a sudden rise in supermarket theft in Australia. The methods however have raised privacy concerns, as employers ramp up surveillance inside their stores. Nimo

It may not have ended in victory for Sir Mo Farah, with his final race at the Great North Run yesterday, but Mark Wood watched him roared on by a delighted home crown, happy to get one last chance to watch the 2012 Olympic hero. “It’s been an amazing career, said Farah. “But it’s really important that at some point you know when to call it a day.” Toby

Content moderators make social media usable by diligently removing graphic or disturbing posts. Deepa Parent and Katie McQue spoke to moderators in India and the Philippines who say they have been traumatised by the images and videos they have seen: “It feels as if I log into a torture chamber each day.” Nimo

Sport

Tennis | Novak Djokovic, pictured, has beaten Daniil Medvedev 6-3, 7-6, 6-3 to win the US Open 2023 men’s final for the fourth time and secure his 24th grand slam title.

Rugby union | South Africa’s Du Toit and Arendse broke Scotland’s resistance for the defending World Cup champions to win 18-3 in their pool B match.

Cricket | England won their ODI 226-7 beating New Zealand 147 by 79 runs. England’s recovery from a poor start levels the series at 1-1.

The front pages

Monday’s Guardian print edition splashes with “184,000 cancer cases in UK this year ‘were preventable’”. “Intelligence service set to haul in ‘China spies’” says the Daily Telegraph while the Times puts a name and a face to the allegations – “Revealed: spy suspect at the heart of power”. “A ‘hostile act’ in the heart of parliament” – the Daily Mail on the subject of Rishi Sunak’s conversation with the Chinese premier. The Metro calls that interaction “PM’s China ‘spy’ showdown”. The Financial Times says “Sunak accuses China of interfering in Britain’s ‘parliamentary democracy’”. The Daily Express reports personal news about Alastair Stewart: “Tearful TV legend reveals dementia diagnosis”. “New dog attack chaos … Terror on our streets” – the Daily Mirror says that finally, the home secretary “agrees with Mirror [that] we need action on danger breeds”. Top story in the i is “UK interest rate hikes set to end, experts predict”.

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The Upside

A bit of good news to remind you that the world’s not all bad

At 61, after an intense career, Mich Maroney decided it was time to start fresh. She moved from London to Skibbereen in West Cork, Ireland for more headspace to focus and create art, something she had wanted to cultivate since she was a child. Over the lockdown, she turned to creative writing for the first time and joined the Cork Prose Collective, which is a group of writers who meet regularly to discuss their ideas.

After a while Maroney decided she needed a new challenge and at 60 she began the process of setting up her own literary and arts magazine. With help from writers, her local print shop and a simple design programme, she taught herself the basics of publishing and a short while later, Swerve Magazine was born, which is available online and is published in print annually.

Sign up here for a weekly roundup of The Upside, sent to you every Sunday

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