Season Seven, Episode Eight: Heylo Discussion Introduction

Narrator: This podcast is intended to support UK healthcare professionals with education. The information provided in this podcast is not a substitute for professional medical advice or treatment, and patients are encouraged to consult healthcare providers, including nurses, for any medical questions or concerns. Interview Hannah Paterson: Welcome to Stoma and Continence conversations from Coloplast Professional, where healthcare professionals and experts by experience discuss the latest hot topics in the worlds of stoma, continence care and specialist practice. I'm Hannah Patterson. I've worked in specialist care and I'm currently the Ostomy Care Associate Education Manager at Coloplast. On this episode, we are revisiting Heylo, the early warning detection system that can help reduce the worry that leaks can cause ostomates. I am joined by Ruth Christer, Coloplast Nurse. Ruth Christer: She was changing her bag twice a day. It wasn't twice a day because of leakage. It was twice a day because leakage. It affected her confidence. She was worried about going out and doing things. But when she had the Heylo device, it was amazing that she went out for the first time with some friends for a meal. While she was out, she actually got a notification on her phone to say that there was a problem. She went to the toilet, dealt with it, came back and enjoyed the rest of her evening. If she hadn't had the Heylo device at the time, She said, I know that I would have felt that burning sensation on the skin, you know there's a problem. Straight away, she said, I would have gone into panic mode, and I would have just gone home. Hannah Paterson: Hi Ruth, it's really lovely to have you with me today. I know we spoke on the ASCN podcast a few weeks ago and you told us a little bit about your involvement with Heylo then, but can we just hear a little bit more about that. So if you could just tell us, obviously we know your name and where you're from, but it's more how your involvement came with Heylo, if you could. Ruth Christer: Yeah, so I was initially asked if I would like to be involved in a new research program that was being led or involved with Richard Brady, who's the consultant colorectal surgeon at Newcastle. All I was told at the beginning was that it was a device that patients could use to help to detect leakage. I didn't really get a lot of information at the beginning of it, other than it was a research study and it would be a national study involving nine different centres and they wanted me to be the lead on that from the Coloplast point of view, from the practical clinical side of things, which was a bit of a relief to me because obviously I was worried that I'm not a research nurse, I've never done that kind of thing before. It was a little bit daunting at first, if I'm honest, because, from the research side of it, but then once we had the first meeting and I met with the research team at Newcastle, it quickly became apparent that I wasn't expected to do the research. I was there for a clinical guide. It worked really, really well because it meant that I could give my expert clinical knowledge and the research nurses knew what they were doing for the research side of things and recruiting the patients and things like that. Sounded great. Obviously, something that's going to detect leakage is going to be a good thing, hasn't it? Then they started talking about things like apps and transmitters and I was like, all right, okay, this sounds a bit technical actually. Hannah Paterson: As we all know, nurses, we're not the most tech savvy of breed, are we? Nursing types of breed. We're not the most tech savvy, so I can imagine your face at that point was a bit Oh, my word. Ruth Christer: Yeah. Once I started to learn a bit more about it, you know, as I say, apps and transmitters and things, I was like, Oh, dear me. Right. Okay. And then I saw the device for the first time, actually via Teams, because we're just coming out of Covid, at this point. So, we're still doing, you know, lots of Teams meetings rather than face to face. So that was the first time I actually saw it. They delivered it actually to my house. So, I got this device delivered to the house with a sensor layer and a transmitter. And I was like, what do I do with this type of thing? And then I had some training by a team and it all started to fit into place. The bit that really fell into place for me was when by the team's training when we did a simulation of a leak so using some salty water and simulating a leak which then sent a notification to my phone and gave me that alert that there was a problem and that's when the penny really dropped and dropped. Wow. And this is going to be amazing. This is a life changing for many patients, a real game changer. So that's what I started to get really excited about it, to be honest. But prior to that, I mean, if I'm honest, when I first heard about it, I did wonder, like you said, nurses were not always technical. A lot of people, a lot of nurses are, don't get me wrong, but it's what patients as well was the big thing. I was thinking, well, gosh, this sounds like it's going to be quite technical. And yes, there will be many patients who can manage this, but are we thinking, is this going to be quite a niche thing? And only certain patients are going to manage this. Mainly, I was thinking the young patients, who are used to downloading apps and using their smartphones and things like that. So I was thinking, is it going to be kind of restricted to them? But then once the device was delivered to the house and once I had to go, had to download the app and follow the app, and it was just, it was so intuitive. I have to say it was so easy to follow. That again, gave me much more confidence that, well, I found it easy. And I'm not the most technical minded person, so if I found it easy, then I think, this is going to be great. And I think, people will be able to manage this. Hannah Paterson: So how many people were involved in the trial? So I'm thinking sort of from a patient perspective from, I know there was yourself and the research. And I say, I know you've mentioned Richard Brady before. How many people were there overall and how were the patients selected? Who selected the patients? Was that down to the research team or? Ruth Christer: Yeah, so in our centre in Newcastle, we recruited twelve patients. So basically what would happen is Richard would send us a list every week of patients that he'd operated on that week. And I would also do a search by a mine of patients who'd had stomas formed within the last twelve months. And then you were looking at the hospital system, looking at the comorbidities and things like that. We obviously had a strict protocol that we had to follow from the research side of it. We had inclusion, exclusion criteria. So I was kind of looking through patients to see who would fit the inclusion criteria. And then the research nurse, so we would devise a list every week. The research nurses would then contact the patients, although I was allowed to do the screening, which was, as I say, selecting patients, inclusion, exclusion, that was the screening process. I was allowed to be involved in that, but I wasn't actually contacting patients because obviously I work for Coloplast, so it was thought there may be some bias involved if I did that. So I would give the research nurses a list and they would contact the patients. and speak to them to see if they were interested in. They would also pick patients up in their clinic as well. They would go along to the clinic which had a patient. One of the research nurses would go along as well and speak to the patient about them, giving the patient information sheet which detailed all the information about the study. If the patients were interested, then they would go through the inclusion criteria again just to double check that they were suitable for the trial. So exclusion were things like hernia. So anybody with a hernia wasn't able to be included, sore skin, the use of steroids, they were all exclusion. And then obviously for inclusion criteria, they had to have a smartphone. And what was interesting about that was when you were doing the inclusion criteria was that patients, yes, they might have a smartphone. But they weren't always able to use it, and that's what we quickly found was that, many patients, they'd been given the smartphone, it'd been handed down from their grandson or something like that. So, yes, they had a smartphone, but actually they didn't use apps and things like that. They basically just used the phone as a phone. Maybe they were able to send a text if they were lucky, but that was about it. There was that side of things as well, that you had to make sure that they were able to use it. So once they fit the inclusion criteria, the patient was wanting to be involved in the study, then they would be invited to the clinic and that's when I would meet them along with the research nurse and show them the device and how that works and then get an idea, get them to download the app. We quickly learned that obviously with the hospital, the WiFi is not always the best. So, we would ask the patients to download the app before they came to the clinic. So, it was already there on their phone, when they came to the clinic. And then we'd go to show them the device and getting the right sensor layer size. That was where I came into it. I did the clinical side of it. So assessing the stoma, assessing the body type, the right bag, right product, and then getting the right sensor layer size, to fit that. Hannah Paterson: So how long did these twelve patients then trial the product for? Ruth Christer: It was three months. Hannah Paterson: So quite a good amount of time then. What was your feedback over that three month period? Ruth Christer: On the whole, very, very positive. There was a couple of patients who, they liked the device, they thought the idea of it was great, but actually they weren't having any problems. So, they never actually experienced a leak whilst they were using it, so I guess they probably didn't get that alert notification type of thing. So, for them, They thought it was good, they found it easy to use, they downloaded the app very easy, and didn't have any problems with it. But then those patients who did have issues, getting notifications and things, for them it was great, and they found it really positive and helped them to manage their stoma. Hannah Paterson: I mean, the story that always sticks out to me is the lovely Pedro, who we both know and I was lucky enough to meet him face to face at ASCN and his story is justso, so powerful because his quality of life prior to trialing Heylo was so, so poor and it just changed his mindset completely. Just getting that idea that this is how it can change people's mindset and give them that acceptance to me is such a massive, massive thing. And leakage is something, and any ultimate that says they don't really worry about leakage. is telling porkies in my mind because there is not really a time when you're, it's not somewhere, even if it's at the back of your mind. Because you're going to have had an experience of it at some point. And it's like most things in life, isn't it? Once you've experienced it, you don't really want to experience it again if it's a negative experience. And you then, when you're in that similar situation again, it does make you on edge, and the idea it can change people. Ruth Christer: Obviously, Becky Brown was the nurse who was with Pedro. He was one of her patients, so, and obviously I met him at ASCN as well, and he did tell that story beautifully of how it did change his life. But I did some work with Adrian, with the ambassadors, and one of the things that stuck in my mind about one of the patients then, he'd had his stoma for eight years. And he said, whenever he had a leak, it always took him back to that very first leak that he had when he was in hospital. He had a real catastrophic leak once he was in hospital in bed and all over the bed sheets and, and then having to sit with a towel wrapped around him until the nurse could come and help him with that. And he said, even now, eight years on, if he ever has a leak, it just takes him straight back to that and how that felt. I'd never thought about that before, if I'm totally honest. So yeah, it does have a huge impact psychologically, on patients when they have that leakage. Hannah Paterson: And I think it is thinking of that mental burden side of things. Obviously with a stoma, the idea is that you don't leak at all. That is the golden place to be, isn't it? You're getting no leaks, but it doesn't mean that you're not as a stoma patient, as a stoma user, you're not worrying about them and nothing can take away that worry. If you've got that worry there, somebody can tell you till they're blue in the face. It's okay. You're not leaking. You're fine. You're fine. You're fine. There's nothing to take away that worry. And for me, it's. It's more, I know you said there were patients on the trial that didn't have any leaks, but to me that would have been a massive thing to almost have somebody like giving you that little comforting almost tap on the shoulder going, look it's alright, you're okay. That is a massive, massive thing. Ruth Christer: One of the patients in my group, she was a young, a young girl, only in her forties who was having rectal cancer, so, I mean that in itself is a lot to deal with, and then having a stomach as well. And she had two young children. When I first met her, she was changing her bag twice a day. It wasn't twice a day because of leakage. It was twice a day because of the worry of leakage. She would change it just in case she had a leak. And that's what she was doing. And then obviously it affected her confidence. She was worried about going out and doing things. But when she had the Heylo device, it was amazing that she went out for the first time with some friends for a meal. And while she was out, she actually got a notification on her phone to say that there was a problem. She went to the toilet, dealt with it. came back and enjoyed the rest of her evening. Now, if she hadn't had the Heylo device at the time, she said, I know that I would have felt that, you get that feeling, you get that burning sensation on the skin, you know there's a problem. Straight away, she said, I would have gone into panic mode and I would have just gone home. But because you could see that it was just in the inner sense layer as well. And, so she was able to go to the toilet, deal with it, and then enjoy the rest of her evening. So the Heylo for her gave her so much confidence to be able to do that. And she also then reduced how often she was changing her bag. So she went to changing her bag every other day, because she could check the phone and it was, everything's looking good. So she knew there wasn't a problem. She knew she didn't have to change her bag just in case, because it was giving her that confidence that everything was okay. Hannah Paterson: And it is that just in case. And when you think of the amount of, when I worked in the hospital, the amount of patients that I used to speak to over the years, that I changed my bag just in case. I was going out somewhere so I thought I'd better change it just in case. Because it does become a habit. When you get into that habit, it is a hard thing to break that just in case habit. So the fact that almost over a three month period, she went from, halving her usage almost, which is massive. Ruth Christer: Which was one of my concerns, I have to admit, when I first heard about it, I was thinking, oh, patients are going to be changing their bags more frequently because they're getting these alerts that say it's a leakage, so they're going to be changing their bag more often. And, that's going to have an implication on cost, isn't it? And, a lot of us work in, you know, in CCGs and things. And I know we're very conscious of trying to reduce costs and things like that, and how we're going to sell this to people, because, straight away, they're going to think, well, they're going to be changing the bag more frequently. And then that example just shows that actually had the opposite effect, actually reduced, for many people, how often they were changing the bag, because it wasn't that just in case. Hannah Paterson: ColourPlast Professional offers a lot of educational material for specialists, nurses and healthcare professionals. Visit coloplastprofessional.co.uk to find out more. I like the fact that you went on a journey as much as anything else with all of it as well. Ruth Christer: I did, yeah, because they were my concerns right at the beginning, you know, the cost, the usage, the technical side of it. That was probably the biggest thing actually thinking, well, how am I going to manage this and how am I going to fit this into my already busy workload. If I've got patients who have got technical issues ringing me, you know, how am I going to do that? Showing them how to use it, that kind of thing, that's going to have a big impact on my workload as well. And again, taking part in the study helped me realise that actually I didn't have those issues. The technical side of it, because we'll have the great support service from Michaela and her team, the patients, when we saw them, we gave them the device and we give them their there's a great booklet in the starter pack as well, which goes through everything again, very self explanatory, but the number for the support service team is in there. So we highlighted that to the patient. If you have any issues with the device, with the transmitter, anything like ring this number. And I have to say, I didn't get one phone call during the study from patients about a technical issue because it was dealt with because obviously we started them on the study and then, registered them with the support service team. So then Michaela's team would ring them within forty eight hours of them getting the device. Is everything okay? And then she troubleshooted all that kind of thing with the patients. So, and then they were ringing them if obviously when they were getting alerts to say, they know they'd had so many leakages within a certain period of time, that they get a call from the support team anyway to say. I see you've had a few issues, what's anything we can help you with? And, often it was just transmitter or, connection, things like that. Bluetooth connection, things like that. And she dealt with that. I didn't get any of that, which I'm so glad , because I’m not sure how I would have managed with that. But I think that’s a really important thing to get over to nurses to tell them not to be concerned that they're going to get all those phone calls about technical issues because, we shouldn't need to be, it should be the support service team that will deal with that. And even then, if the team, if they're getting alerts to say, they've had all these leakages, then it then goes back to the nurse because it's for the nurse to know to help them with the leakage and because at the end of the day, Heylo is yes, it's alerting you to fact that there’s the leakage But why are you having the leakage? That's still the crucial thing so the crucial part of this is still getting the right product and getting the right fit that's still got to be the most important thing in this and Halo is just a backstander just supports it, really. It almost Hannah Paterson: It almost facilitates that, doesn't it? Ruth Christer: Yeah. Hannah Paterson: Because some people do just accept, and especially patients that have had their stoma a while, they almost just accept that leaks happen, and they don't. To get that phone call then, and say, look, you're having these leaks, quite regularly, this isn't right. Again, just giving them that little bit of a push in the right direction to change something, because, you and I have both seen, again, patients that have been on the same product for years and years and not changed it, and it's not necessarily the right product for them anymore. Ruth Christer: Yeah, that's right. So it's still, because I think there may be nurses who may think, oh, that we're just going to stick everybody on a Heylo product. It's going to let you know when it's leaking, but that's not solving the problem of leakage, which, no, they're right. It's not solving the problem of leakage and Heylo is not there to solve the problem of leakage. It's there to help with the psychological burden of leakage. So, we've really got to stress that and the importance is still getting the right fit and getting the right first time, when you can. So that, that's still the most important thing to stress here. And Heylo is just like a, a subsidiary support system for that. Hannah Paterson: And there is the fact that Heylo works under all bag types, so it's not just for a Coloplast product as well. In other words, we've had that pushback and concern that it will only work with Coloplast products. So, but it works under any type of base plate. And again, you take away that thing that people say, well, you're only trying to do it to put people on Coloplast products. Well, no, if there's a, it's whatever's the best for that patient. Ruth Christer: Yeah. Absolutely. And we did have patients in my study who, you know, convex, concave, flat, and it worked for all of those. We had a patient on a convex pelican bag, so we did have other types of products as well. Hannah Paterson: Thinking about your patient cohort again, I know again it's something we briefly touched on at ASCN, what was your age range? I'm thinking on like the tech side of things, so what was your age range of your people? Ruth Christer: In our study, we had the youngest patient was thirty. And the oldest patient was eighty two. Hannah Paterson: Goodness me. Ruth Christer: She was absolutely fabulous. She was an ex nurse. She was actually the ward sister on my first surgical ward as a student there. Hannah Paterson: Oh my word! Ruth Christer: I'd never seen her for all that time but she was amazing. So, yep, she had a smart phone and she knew how to use it as well, which was very helpful. And she really loved it, to be honest. and it helped her so much because, um, she'd had a few issues with leakage at night and it put her off going to visit, she had family, a niece down in London who she would often go and stay with and, it put her off that because she, with confidence, really lost her confidence. So she did do one visit, but,, she was towels wrapped around her and all of that kind of thing in case she had a leak. And then when she had the Heylo device, she went down to see her again and she said it was a totally different experience because, she knew, she had the confidence then with the device to know that if there was a problem, she would be alerted to it. So, it really helped her massively with her confidence. And, yeah, she went to see her niece and the holiday and weekend away type. thing. And it just gave her so much confidence. She didn't want to give it back. And every time I see her in clinic since then, she's always like, when am I getting it? When will it be out? When can I have it? And, unfortunately the last time I saw her in clinic, actually she had had a few more leaks and it knocked her confidence again? So she was like, when is this coming out? I mean, we've sorted it out. It was just, she needed to change and, that kind of thing. So there was a reason why, but again, going back to that. That other patient, you know, it takes them straight back to that first leakage and, and it just affects confidence so much. Hannah Paterson: Yeah, it is that confidence knock. Ruth Christer: I mean, she found it so easy to use. She didn't have any technical issues with it. It was just, she loved it. She loved it. Hannah Paterson: What was her initial attitude towards it? I'm just thinking, in her eighties, former nurse, so, again, and I'll hold my hands up, I'm a little bit sort of IT illiterate myself and I mean, if you look at me trying to use an iPhone, it's, you'd think I was trying to operate the spaceship up on Mars, something like that. I'm not very tech savvy. What was her initial thoughts regarding it? Was she on board from the get go, or did she have to take a little bit more, not convincing, but… Ruth Christer: No, to be honest, she was pretty good right from the start. We approached her about it, well the research nurse did, and said that they had this device and would she be interested in it. She fit the criteria, so she came along to, to have a look and to see, and straight away, she was like, yeah, this will be great. And I think being a nurse and having, she worked on a call of echo ward, ward sister, she was just absolutely astounded by how far things have come in stoma care. The changes in products, I mean, even having the stoma herself, the change in the products was amazing to her because she'd remembered all of the old products that she'd seen when she was nursing on the ward. So having this device alongside it, she just was astounded by it, but she was on board right from the beginning. That was her mindset. And I guess it might not be like that for everybody, but I think once you show them it and they see how easy it is to use and they see the benefit of it straight away, to be honest, she certainly did. Hannah Paterson: Absolutely. As you know, I'm a massive fan of Heylo and I see the benefits of it. For me, it would have been a complete and utter gamechanger for me. I know we hear this a lot with Heylo, game changer, game changer, but it really would have been. Ruth Christer: Well, I think it is, and I think the other thing that, as well as the psychological support that it gives the patient, it also helps them, I think, to be in control. I'm going to just give you one more example of a patient who, he went back to work with his stoma, he was worried about going to work and in meetings and things like that, and he again had a leak during the meeting, but saw the notification on his phone. Nobody else knows that it's happening. Because it just comes up on your phone and everybody's looking at their phone these days, so he received a notification on his phone and he's like, all right, there's a problem, but tell us exactly where the problem is just to be in a sense of it. And he was able to think like, okay, I'll deal with that. I've got twenty minutes left of this meeting. I'll deal with that when I'm finished. And that's exactly what he did. So again, it gave him the confidence to be back at work. And, and you think, well, there'd be a lot of people. We know that people who maybe aren't going back to work because of that fear that what if this happens, what if I have a leak when I'm at work and things like that. So again, it's that being in control, I think, as well, and knowing that if there is a problem, that it's happening so you can deal with it. Hannah Paterson: And I think that's one of the big things of having a stoma is a lot of the time you feel like you've become out of control a little bit. Then when you've had a stoma formed, especially when you get leaks, things like that, your feeling of in control is just. Gone. You don't feel, you're powerless almost at that point. I would say even to gain back that little bit of control, that little bit of power back, the responses have just been amazing. And I'm so excited for this to come out a bit. I feel a bit like that lady. When's it coming out? When's it coming out? I feel it's like waiting for Christmas. Ruth Christer: Yeah it is, it is. And we know it's not going to be for everyone and we know there will be a clinical process to assess who is going to be suitable for Heylo and things, so they're working on that at the moment. So, it's not going to be out there for everybody. It's not going to be suitable for everybody. Like I said those patients that we had in the studio who didn't have any issues with leakage, for them, they said, yeah, it's great, but actually, I don't think I would. need to use it, because they weren't having leakage, so they didn't feel that they needed that extra thing. And that's fine, that's the same, but there may be people who are not having leakage but worry about leakage. So, just because, they're not having the leakage doesn't mean they're not worried about it. Outro

Hannah Paterson: And it's not to say because you don't want to need it now, that you might not want to need it in the future. Yeah. All it takes is A couple of leaks to change mindset again, and it might just be that by having Heylo for even if it's a short term use of Heylo, it might give you that mental reset just to give yourself that confidence back. Thank you so much Ruth, and to everyone listening, we'll see you next time. Thank you for listening. To see more of the wide variety of education we offer, please visit coloplastprofessional.co.uk. See you next time. Narrator: Stoma and Continence Conversations is a Vibrant Sound Media production for Coloplast Professional.