Ep 3: Siobhan Lanigan, Izzy Newberry and Chris Williams: Martha's Rule

In this episode of West Side Stories, our host Siobhan Lanigan explores the implementation of Martha’s Rule, an important patient safety initiative designed to ensure that the concerns of patients and their families are heard and acted upon when a condition deteriorates. 

Named after Martha Mills, who tragically died from sepsis after family concerns were not escalated, the rule serves as a vital safety net within the NHS. This edition brings together insights from two local hospital trusts to discuss how this shift from paternalistic medicine to patient empowerment is being realised in practice.

Siobhan first talks to Izzy Newberry from Gloucestershire Hospitals, who shares her experience as part of a pilot site for the initiative. Izzy addresses common clinician fears regarding a "tidal wave" of calls, revealing that call volumes have remained manageable at about one per week. She delves into the emotional complexity of these interactions, the importance of "narrative medicine," and why healthcare professionals must remain curious when a family member senses something is wrong. Her reflections highlight the profound culture shift required to view patients and relatives as true partners in care.

The conversation continues with Chris Williams from North Bristol Trust, who explains how the avoidable death of another young patient motivated his trust to join the pilot. Chris provides a candid look at the practical challenges of setting up a 24/7 acute response team from scratch and the "psychological mountain" of giving patients the direct power to escalate their own care. He argues for being ambitious and the need for transparency of hospital care.

Tune in to hear how these clinical leaders are navigating the transition to a more inclusive healthcare model. Whether you are a healthcare professional or a patient, this episode offers a compelling look at the future of patient safety and the simple, life-saving power of listening.

Programme notes

• Martha's Rule
• Maddy's Mark
• Gloucestershire Hospitals NHS Foundation Trust
• North Bristol NHS Trust
• Cautionary Tales - Tim Harford

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Find out more about Health Innovation West of England

Transcript

Vanesther Hamer Hello and welcome to this latest episode of West Side Stories, the podcast from Health Innovation West of England. I'm Vanesther Hamer, communications lead for the network. In today's programme, senior project manager Siobhan Lanigan talks to colleagues from two of our local hospital trusts about the introduction of Martha’s Rule. 

Martha’s Rule is named after Martha Mills, a thirteen-year-old girl who tragically died in 2021 after developing sepsis while in hospital. Martha had been admitted following a cycling accident that caused a pancreatic injury. Despite repeated concerns from her family about her deteriorating condition, those concerns were not escalated or acted upon. In 2023, a coroner concluded that Martha would probably have survived had she been transferred to intensive care earlier in response to Martha's case and others like it. 

The Secretary of State for Health and Social Care and NHS England committed to introducing Martha’s Rule. The aim is simple but powerful to ensure that the concerns of patients, families, carers and those who know them best are heard, taken seriously and acted upon when they believe a patient's condition is worsening.

Siobhan Lanigan Hi, I'm Siobhan, and today I'm really pleased to have the opportunity to speak to two colleagues from different trusts on their insight and experience on piloting Martha’s Rule.

Health innovation networks were selected by NHS England as a key delivery partner to support the pilot and implementation in England. This work currently spans acute inpatient settings for both adults and children, and in the west of England. It's being delivered in close collaboration with clinical colleagues across all our integrated care systems.

First of all, I'm talking to Izzy Newberry from Gloucestershire Hospitals.

Thanks so much for joining us today, Izzy. Could you tell us a little bit about yourself, your role where you work? 

Izzy Newberry So I'm an advanced practitioner for what is essentially a critical care outreach team, but we are called the acute Care Response Team in Gloucestershire Hospitals NHS trust. I've been in the team for 12 years and the team has been running far longer, sort of 20 years, almost, initially as a sort of purely outreach model and then combined with hospital at night. So we run 24/7.

Siobhan Thanks, Izzy. So you and your team have been working in this space for a long time. And I know that Gloucestershire is one of the seven pilot sites involved in the Worrying Concern Improvement Collaborative, which helped shape what later became Martha’s Rule. At the outset, were you and your team concerned about a large number of calls?

Izzy I think that, all the way down the line, I think there have been clinician concerns about overwhelming a service, but I think I spent then some time immersing in the data and the sort of, um, the literature out there, which sort of, you know, America had already started there several the, um, Lewis Blackman, isn't it? and, um, Ryan's rule in Australia. So I think I was already aware from what I'd read, that it didn't seem to overwhelm services. Um, and actually then there was the data published from Royal Berkshire, you know, Mandy O'dell's team at that stage, which which also demonstrated it wasn't an overwhelming impact on on team service delivery. 

Siobhan And you're finding that now with your team and the data that you're supplying to the central team every month, that your call numbers are low? 

Izzy Call numbers are low and it's about one a week. You know, there's little pockets where it sort of you might get two in a week, but generally it's no more than one call a week. I think the complexity and the difficulty of some of the calls for, for the teams have caused some challenges. I think they are, you know, often quite highly charged with emotion. Yeah. Um, and that's quite difficult to manage, I think, for teams who who actually only want to help, they want to, you know, try and fix the problem. But, you know, sometimes it's not actually a problem to fix. Yeah. And it's a breakdown in communication, all those sorts of things that I think, again, the literature, um, alludes to. 

Siobhan Yeah. And patients and their families, they want to be heard. As someone who responds to referrals, how does that feel personally, when you go and see a family? 

Izzy So all of our referrals go through a dedicated phone line and we take on the way the PALS opt, which is to allow that to go to a voicemail so that we can have some preparation time And we don't carry that phone around, so we check in on it regularly because actually a busy ward is not the place to take a call that can often last up to an hour, or you know, it's a long time and you want to be able to give that time. So I would say yes, actually, there is probably apprehension because you know, that in our experience now of taking the course, there is this very highly charged emotion behind them and anger and lots of feelings. I'm generalizing, but yes, you've got to prepare and you want to say the right thing. You want to help, you want to be able to have have some solution perhaps. And you're not always able to do that. 

Siobhan Yeah. Is there a, a case or interaction that's really stayed with you? 

Izzy I can't see this one particularly. I think the themes stay with me, actually, which is about, you know, it's kind of you end up absorbing this distress from a relative. And, um, as I say, you want to be able to help. And I think that runs through the whole team. You know, we we're used to being being able to, you know, support our colleagues help. And so we want to do that. We're strong patient and family advocates. And and I think that that's challenging for you personally when you you're met with this sort of wall of perhaps anger at the system not individuals. 

Siobhan Yeah. But when you're truly empathetic, you you do take on that. 

Izzy You can feel it. 

Siobhan Yeah, you can feel it. And it's part of you. And how do you as a professional protect yourself but also help others, if that makes sense? 

Izzy Mm, I think it's looking at ways. I think we, you know, we're looking now just at perhaps setting up, setting up some debrief sessions so that literally only this only this week it's sort of beginning. So and I think that's really important. And I think to be able to discuss the cases within the team and perhaps the wider team as well is very helpful.

Siobhan Martha’s Rule is often described as a patient safety initiative, but it sounds like it's also about changing relationships between healthcare professionals, patients, and their families. What have you learned about those conversations that work best in practice?

IzzySo I think that the fundamental with Martha's role is about this idea of sort of empowering patients and their families, particularly their families, to speak up when they see those early signs. And that, I think is embedded in our practice as a team. You know, that's what we will say. And if you're worried, then we should be worried.

Siobhan That's a really powerful point that if a family is worried, healthcare professionals should be curious about why they're worried.

If you were starting again, Izzy, what would you do differently? Or maybe what advice would you give to someone that's about to start? 

Izzy So I think you need time. Dedicated time. I felt certainly when we were doing the the early stages of it, I was trying to juggle lots of things. We I think one of the fantastic things… So last year we had a lead from Martha’s Rule, who we, um, some of the funding we had. And that facilitated being able to employ somebody. So I think that's time is really important. 

And I think managing your expectations of how long it's going to take. So I still think we're not even halfway through. It's not embedded as a, a known I think I still I still don't think it's actually known. And I think that'll take a number of years, so known in the two two places really. 

When we started, we, we felt that we needed to first of all focus on clinicians and ward staff because actually, if they didn't know about it, how could they also advocate? So that was our focus. And we're probably now at a stage where we need to revisit and think about how we get patients and relatives to know about this. And I think probably more relatives. 

I think certainly if there's acute deterioration, patients don't always know if they're unwell. yeah. And I know that that sounds, um, counterintuitive. You'd think the other thing is true, but actually, when you feel rubbish, you know, you can't distinguish between the levels of how rubbish you feel. I think we have to recognise that sometimes patients may feel worse, but they can't voice it at that time. And that's when I think the value of relatives, knowing that patient, they know the subtleties of perhaps that earlier deterioration, but they also can recognise, you know, they're really not, not well. Um, before we perhaps pick that up. 

Siobhan Yeah. And how do we how do we embed a patient wellness questionnaire that works for all patients all of the time is tricky. 

Izzy Well, then we move away from patient centred care, don't we? Really? Because we're trying to make one tool work for everybody. And I don't think it necessarily works like that, you know. 

And I think we also actually one of the, um, one of the pieces of work that we are about to start is actually do a bit of a review of, is this a data collection issue? Does it already happen? Because every team, a ward round will go and ask the patient how they are, the physios, the salt, the OTs. Everybody will go and talk to that patient and ask them how they were. Now, not necessarily in the context of how are you feeling the same, worse or a numerical score. Um, but that information is  asked and so is it, is it that we're trying to put it in a place where we capture that? 

But that said, I think it goes back to the idea that I think Martha’s Rule is really about this sort of sort of culture shift away from this paternalistic and about sort of saying, actually, you're worried. And so I think it's about encouraging that, you know, what is it you're seeing? What are we not seeing that isn't perhaps on our observations? 

So I think it's developing that culture of, you know, it's okay to regardless of it's what you see. It's the patient in front of you. Do they, do they look well or unwell? Is something changed? 

Siobhan What's next for Gloucester with Martha’s Rule? 

Izzy A bit of a retrospective to review some of the cases, I think, and then some support within the responding team, which is our acute care response team, to share debrief some of the calls. I think that's probably an important aspect. So that we can we can prepared and respond in the best way that we can. So we're feeling prepared as a team. So I think that's next. 

And I think also understanding do patients know that it exists? So I think there's another piece of work there. We don't really know that I think at the moment. So that would be a good piece of work to undertake as well. 

Siobhan Oh, thank you so much for sharing all that with me, Izzy. Just our last question was about a resource recommendation. So something inspired to share with people. 

Izzy Well, interestingly, it's my most recent little bit of literature search. Only the other day was around, um, I was thinking about patient stories and narrative, and I discovered that there's a thing of sort of narrative medicine. This idea that stories, they're so important. We don't always have time, do we, to, to listen to those? But actually it's the context. The narrative is part of that whole person, you know? And I think that's so important. And we don't always have that time within healthcare or in our busy hospitals or even our GPs, I guess, as well. You know, time is so precious for everybody. 

Siobhan So true. And humans are complex, aren't we? 

Izzy Absolutely.

Siobhan Izzy, thank you so much for joining us and for sharing your experiences of Martha's role in Gloucestershire.

Siobhan What really stood out to me from our conversation is that while Martha’s Rule provides a practical route for patients and families to escalate concerns, at its heart it's about culture. It's about creating an environment where people feel able to speak up, where healthcare professionals are curious about concerns, and where patients and families are recognized as partners in care. I was also struck by her reflections on the emotional impact these conversations can have on staff. Responding to families at moments of worry and distress isn't always easy, but it highlights just how important compassion, communication, and listening are to patient safety. Again, I'd really like to thank Izzy for her honesty and insights.

Siobhan Coming up next, we'll be hearing from Chris Williams from North Bristol Trust. We'll be exploring their experience of rolling out Martha’s Rule, the lessons they've learned along the way, and what other organisations can take from their journey.

Hi, Chris, thank you so much for joining us today. Would you mind introducing yourself and telling us about your role and where you work?

Chris Williams Um, yeah, absolutely. So my name is Chris Williams. I'm a consultant in acute medicine and intensive care at Southmead Hospital in North Bristol. And I'm the clinical lead for our deteriorating patient group, which kind of became the clinical lead for our acute response team, which then kind of became the clinical lead for implementing mask rule alongside other people as well.

Siobhan When we first hear about Martha’s Rule. And what were your immediate thoughts?

Chris I first heard about Martha’s Rule through reading The Guardian, and through the process. So obviously Martha's mother, Merope Mills, was a Guardian columnist. That's where I first heard the case and first saw it going through and first saw the discussions of Martha and her experience, but also the kind of push, plea, if you will, for something more and some kind of safety net within a system. And it actually took a little while, probably a good few months after that, before I then saw the conversations emerging in and around the healthcare setting and my own healthcare setting.

Siobhan Why did your trust apply to be part of the pilot work?

Chris There are two reasons, really. One is I think it's an obvious opportunity. It's an obvious opportunity to be part of a process of improving patient care, of improving the patient autonomy, um, patients responsibility for themselves or ability to respond for themselves whilst being supported by NHS England and going through that process of other trusts and other services, doing it at the same time. So you can kind of learn together, develop together and understand what other people are going through. 

I think if I'm honest, there's a second answer as well though. So we at the time were undergoing a pretty big overhaul of our response to deteriorating patients. And that involved a number of features. It involved improving our training programmes. It improved, uh, it involved improving our observations performance. Really knuckling down on our new scoring and how we responded to those. 

And the reason we were doing all of that was we had our own episode of poor care that involved a young person dying. So we had a young girl, a 20-year-old, who suffered a very rare complication of a dislocated hip, a necrotizing myositis. And there were a whole host of reasons, from clinical bias to not doing her observations on time. There were a whole host of reasons that all came together to mean that we didn't recognise that she was as sick as she was until it was too late. And although she then spent two weeks in an ICU, critically ill, throughout all that period, she sadly died. 

And I think we were doing a lot of… soul searching sounds too broad and too deep. Or maybe not. Maybe not too deep, but maybe too nebulous. Um, but we were doing a lot of work to try and improve that, to reflect upon that and to change those processes. One of the key things that happened for her. Maddie, Maddie Lawrence, one of the key things that happened for her was she kept saying she felt terrible, and her family said she felt terrible. And we didn't have the mechanism that that could be escalated beyond their immediate talking to each other, talking to that immediate nurse who saw them at that one time. And I think when you look at Martha’s Rule and you read about Martha’s Rule that potentially offered that mechanism for her and her family and offered that extra safety net, that extra mechanism for us where we could have provided her or could have recognised her deterioration earlier.

Siobhan Thank you for sharing that, Chris. Hearing about that experience, it's easy to understand why the principles behind Martha’s Rule resonated so strongly with your organisation. But when you first got involved in the pilot, were there moments when you wondered how you're actually going to make it work in practice?

Chris Yeah, yeah, there was. So frankly, there was a massive challenge for us. We did not have an outreach team. Um, so so we had no process, no structure in place to do this. If I'm honest, I thought we wouldn't be able to do it. And, I think that was a huge psychological barrier mountain, if you will, that needed to be overcome. And then alongside that, of course, plenty of challenges came along the way, not just the practical ones of how you set it up and what you do, but a lot of the conceptual ones about what it means to take direct referrals from patients and their relatives. But yeah, the first thing, the very first thing, when the NHS England communication came out and said, you know, who would like to apply for this? We felt like the kind of trust that really wanted to do this with our recent experience, but wasn't in the strongest position to be able to do it.

Siobhan And so do you think Martha's Rule has managed to change conversations with patients and their families by perhaps involving them more?

Chris I think, well, okay. I think yes and no. Uh, because I think in an ideal world, you hope that you haven't changed conversations with families and everyone always has the opportunity to talk to the nurse, talk to their doctors, uh, escalate their concerns and have them answered. And I think if we look at the number of Martha’s Rule calls, we get what that tells us as a hospital that is or was eight hundred and eighty bedded and now is closer to one thousand in our in our various escalation states. Um, what we find is there are very few Martha’s Rule calls actually coming through. So most people, most people you hope are not needing a change in their conversations and are still managing to do it. And it was quite important to us that this wasn't replacing or bypassing normal teams, other than offering that safety net and that extra opportunity for people. So we don't want to take the patient's parent team out of the conversations that would that would be a bad outcome at the same time. 

So that's my no. At the same time, yes, yes, there are some changes. Um, I think one of the things I notice when I'm talking to people and I, I think about in a setting of people being discharged from the ICU or people who are unwell on my enhanced care unit in AMU, I tell families that this exists, and I say that there's this is here, and actually vast majority of those families don't then go away and call it, but they know that it's there. And obviously we have posters up everywhere displaying that it's there. But I think it's really important to say to people as well that this is here, this is available, this is a safety net, this is a protective mechanism that's there for them. So yes and no.

Siobhan Yeah, I completely agree. It's almost like Martha’s Rule is your in real life emergency crash bell that you can pull at any time. You don't need to use it all the time, but it's there. And it's reassuring to know that it can be used. Yeah. Great. Thank you. I just wanted to ask a bit about your learning. What have you learned along the way of being part of this pilot? Are there things that didn't work as expected? At first, you had to kind of modify or change.

Chris So I think there's a few different bits of learning. So there's some sort of conceptual learning and then there's some practical learning as well. I guess for me personally, conceptual learning would be ambitious. Because I think I said at the start, I thought it would be really hard for us to set this up. And actually, it's a testament to the people who maybe didn't drill into all the detail and maybe said, no, we should go for this, that actually, you can have a big, ambitious aim and say, yes, this is what we're going to do. Let's do it. So I think for me, one of the things is, be ambitious. 

I think on a second, sort of slightly conceptual point, I would say ask the specific question. And what I mean by that is if you, uh, it's easy to think, oh, well, no one's going to fund me to set up a 24/7 outreach team and run this other thing. And then when you try and ask a half question, oh, what do you think? If we did something like this and we used this thing that already exists and maybe we did it that way, you're never going to get the full answer, which is, oh, why don't you get funding for a full, uh, why don't you get funding for a full outreach team? 

But actually, if you want a full outreach team and you need that, that's a learning. You absolutely need that to do this, then you need to ask specifically for that. So I guess that's my conceptual learning is be ambitious and ask the specific question. 

I think on a practical point, I would say that you can trust the patients. We have had very, very few cases of this being overused or misused. And it is a big conceptual shift, uh, a big conceptual shift to say we're moving away from we, the healthcare professionals control the means to escalate your care to seeing you. The patient control, the means to escalate your care, and there's a lot of worry for people in that. So that actually some of the hardest thing was convincing people that it wouldn't be overwhelmed by a tidal wave of calls, that there wouldn't be this vast array of phone calls and alerts coming through to it that were all completely inappropriate. 

But actually, what we've learned is for the vast majority, you can trust the patients. They are not overusing this. They understand what an emergency is. They understand that they're calling for something that is significant and serious and is deteriorating. And even though most of our calls are not for acute rapid deterioration, they're for real reasons. They can't get an answer, they can't get communication. They're worried because they still haven't had their scan. And a lot of these things can be answered pretty quickly. But we haven't. And from the various work we've done when we talk regionally with other hospitals we have, most hospitals have not been overwhelmed by a deluge of calls coming through.

Siobhan Yeah. And that reflects the NHS monthly data that they're that you're supplying to the central team. But they're also kind of sharing that back now that it reflects exactly what you're saying. Yeah. So what's next for Martha’s Rule in NBT?

Chris So there's probably two, probably two elements we need to work on at the moment. 

So I guess we can feel really comfortable. We now have a sustainable 24/7 acute response team who can take these calls, who can respond to them, who are trained. That is brilliant. That puts us in a brilliant position that we weren't in a year ago. 

And the two things that we need to do. One is expansion. So we're currently in for all adult inpatients. We have currently a safety mechanism in place for both neonates and for our maternity care, and that safety mechanism has been agreed through those departments. That says if a call comes through from Martha’s Rule call to one of our acute response team practitioners from either parents of a neonate, relatives, carers of a neonate, or someone in and around maternity, they will take those details and feed them immediately, day or night, to the on call consultant and the consultants for both those disciplines wanted that and are happy with that. 

So we have that as a safety net, but I think it would be nice to formalise that now and have a process that says, exactly what are we doing for these specific specialist areas. So that's  one side is that expansion into neonates and maternity. 

I think the second is making sure that we've got a proper, robust, reliable feedback loop, from the Martha’s Rule calls into the individual divisions because actually the acute response team are there to fix an immediate concern. I'm worried that my sibling is acutely unwell and looks much, much worse. They can go and review, do the necessary investigations, make an assessment, call another team, escalate as needed. 

What they're not there to do is, and literally can't do, is fix recurrent themes or change the fact that, for whatever reason, they felt they couldn't escalate through their own nurses, their own parent teams who are around them. 

So what we're building at the moment is, will become regular monthly reports that go back to individual divisions so that we can pick up on those themes, pick up on those specific issues coming through, and the divisions can own that and make changes themselves. And I think if we if we don't do that, what we'll have is a safety net, but no mechanism to fix some of the initial problems that might be happening. 

So that's probably although I've said it second, that's probably the most important thing we're doing next.

Siobhan Yeah. And it's really interesting how, as you said, Martha’s Rule is set up for acute deterioration, but it's actually improving other processes within hospitals. It's just how do we capture that and and improve that? Yeah.

Chris Well this is yeah I mean how do you capture it? It's really hard to capture a lot from Martha’s Rule. And I think I think you're right. I think this change is actually quite fundamentally how we work as a, as a profession that we, we give the responsibility that we've always kept for ourselves. We give it to our patients. And I think it's really hard to capture what that means as a, as a profession. And to all of our patient groups and everyone who's using our services, you can't capture meaningfully. I don't think that autonomy that has been given to people, let alone it's hard enough capturing the actual data of the people you see and where they're from and what you've done for them. And did they end up going to another, um, did they go to a high care or did they go to an ICU? That's hard enough to capture, uh, let alone some of those more, um, conceptual elements or the system improvements that you can hopefully put in place because of it.

Siobhan And I think, I think you've just kind of explained about how we're moving away from that kind of paternalism, aren't we? And we're moving towards more empowering our patients and staff. Yeah.

Chris I think that's I think that is a that is a big thing of it. And that was one of the biggest things that was so hard to get over the line with a lot of concerned healthcare workers, you know, a lot of people really worried, what is this going to mean in terms of how many people are going to call this and what are they going to be calling about? How will they know? And I think that is that is our experience on the whole. People use it for very reasonable reasons, even if they're not always acutely sick. They're calling because they're worried about something, because something has changed, because there is an issue. It's shown me, us that we can definitely trust our patient group with this. Uh, we can definitely let them ask these questions.

Siobhan So just to finish, finish up, Chris, we're just asking you for a resource recommendation. So something that's inspired you, something to share with our listeners.

Chris So I'm going to recommend something completely non-medical. So if I wanted to show off, I would try and make myself seem literary and educated. And I would say that if you were going to read anything, you should read anything and everything written by Natalie Haynes, who is brilliant. 

But actually, I spend most of my time not reading, uh, and instead listening to podcasts. So I really enjoy listening to Cautionary Tales by Tim Harford. So he also does More or Less on Radio Four, which was undoubtedly the best reporting that you could hear around the Covid pandemic. Actually, a really neutral but highly intelligent dissection of the numbers in and around Covid. And they do that week in, week out, around all manner of statistics and numbers that have hit the news on Radio Four. 

But his individual podcast, Cautionary Tales, gives a really interesting and detailed look at different events or issues or individual lives that have shaped the world we live in either today or even sometimes from long ago. And I think they're a really entertaining listen where I feel like I'm becoming actively smarter, whilst also relaxing and switching my brain off at the same time.

Siobhan Oh, that's a great recommendation. Thank you so much for joining us today and for talking so openly.

I'd like to say a huge thank you to both of our guests, Izzy Newbury from Gloucestershire Hospitals and Chris Williams from North Bristol Trust, for sharing their experiences and insights.

What really stood out to me from both conversations was that Martha’s Rule is about much more than a new process or escalation pathway. It's about listening. Listening to patients, listening to families, and recognizing that those who know a patient best often notice subtle changes before anyone else.

We also heard how Martha’s Rule was helping to drive a wider culture shift across healthcare, moving away from a more paternalistic model towards one where patients and families are empowered to speak up and where their concerns are welcomed, explored and acted upon. Both Izzy and Chris spoke about the importance of trust, communication and partnership, as well as the practical challenges and learning that comes with implementing something new. Their experiences show that while Martha’s Rule provides an important safety net, it can also shine a light on opportunities to improve care more broadly.

Vanesther Hamer Many thanks for listening to our latest instalment of West Side Stories, and a big thank you to today's host, Siobhan Lanigan, and our two guests, Chris Williams and Izzy Newberry. We'd love to hear your reflections on the introduction of Martha’s Rule and its impact on patient safety. You'll find ways to contact us in the programme notes. Until next time, goodbye.