S8E3 The inclusive stoma service – focus on LGBT+ 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. Hannah: Welcome to stoma and continence conversations from coloplast professional where health care 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. Hello and welcome to the podcast. Today we are talking about the Inclusive Stoma Service with a focus on the LGBTQ plus community. And I'm delighted to be joined by Kyle Waring, a stoma CNS from Leighton Hospital. Kyle: We take religion on board and we take all of that into account. We should really be taking on sexuality as well. Yes, you can cuddle, you can touch, but that part of physical intercourse gets taken away. It's just a medical procedure. Get that done, you're fine. Hannah: Hi Kyle, thank you so much for joining me today. If you could just tell us a little bit about yourself please and how I've ended up dragging you into this today for me please. Kyle: So I'm Kyle, I've been a stoma nurse since 2018. But I've worked in colorectal since I was 18 years old, so I'm prehistoric in this area. Met Hannah in London. I think it was a sighting course I did. Yeah. You've got to talk it onto it, because it's just a gap that I think's They're not just in our industry, I think in all aspects of the health industry. Bear in mind, the health industry is predominantly an industry employed by females and a lot of employees from the LGBTQIA It's an industry that doesn't really like to divulge into patients of that nature. and give them really much support of that nature. So I think it's just a massive gap. For the staff that are there, I don't think there's a lot for patients to really kind of go with. And I also think there's also the fear and the stigma of affecting nurses. They don't want to upset a nurse. They don't want to make them feel uncomfortable. You never really find somebody that's part of the, be that open with the nurse about their sexuality. Because predominantly a lot of nurses on the wards, yes, some are young, but some of them are really old nurses and Some people aren't as up to date with a lot of the modern people, how people identify anymore. They don't want to make them feel uncomfortable, so they just kind of accept it now. As, uh, you know, it's naturally, the NHS has always kind of been a more heteronormative system, so it assumes that everybody is straight, everybody's normal, unless stated otherwise. Hannah: Yeah, and I think this is, was something that we both realised that we were quite interested in, wasn't it? And when we were chatting in London, and then we chatted again a bit more at ASCN about it last year. And, I mean, I'm sure you won't mind me saying, Col, you yourself are in a same sex relationship. Yes, I am. And you've experienced boundaries yourself within healthcare, haven't you? I know you've spoken to me about Kyle: it. Even as a nurse, I've had people that have I've had patients that have refused me being with, look after them because I am of that nature. When in laws have been in hospital, I've been assumed that my wife isn't there, although my partner is with his mum. So, um, you know, you just get assumed that kind of thing. People just assume that you are unless state otherwise, but nobody really has. to tell anybody who they are. You don't have to tell anybody that, look, by the way, I'm gay, or by the way, I'm a lesbian. I shouldn't have to say it, but it should be something there that flows a conversation so it just happens naturally. Because for me, especially in stoma care, and me coming from being a gay male, if my partner was to have, for example, an APR surgery, so his rectum removed, our point of intercourse is gone, and that's taken away from us. But I don't feel comfortable to potentially go to my stoma nurses that don't really understand what I have to go through or what we have to go through when they don't, nine times out of ten, don't really do it themselves. Intimacy, yes, you can cuddle, you can touch, but that part of physical intercourse gets taken away. And I think sometimes it gets focused on, it's just a medical procedure. Get that done, you're fine. And then it's the after part. I mean, I know the patients, and there are patients that are of um, the LGBTQ nature. I know one of them's gone to sleep in a spare bedroom, and he's not, since the day he's had surgery, he's never gone back to the same bedroom as his partner. And won't. Because he just doesn't know what to do. And it's been that long, that no matter what we say to him now, he's just kind of got into that. I mean, you can't get out of it. Hannah: Yeah. And it's that different psychological side. It's it's like, so there's a lot of the folks on look, but we've cured you of whatever you've got, be it cancer, be it IBD, we've made you better from that. But actually, and especially for patients within the LGBT community, as much as you possibly fix one thing, you can actually have created. Almost something, I don't like to say worse, but potentially worse because you know, when you're in a relationship, the intimacy within a relationship is one of the major contributory factors. I mean, that's why relationships break down when lack of Kyle: intimacy. And I find it so unique. Everybody's relationship, their intimacy, it's so unique to each individual person. Me and my partner could be a really, really affectionate, touchy, feely, intimate all the time. That's us. We could also be the people that actually, public displays of affection are our thing, but actually the bedroom means something to us. That's our time. It's different from person to person, but for some people to take, have that taken away from them, and then when you look at all the publications that are out there, and if you flick open a book, and Every picture is of a white couple, probably in their 60s, and you'll read about sexuality and it'll go, sexuality, and all the paragraph basically says is, don't put anything in your stoma. You've literally just started, to myself, on something that are negative. I don't have anything positive to look at. If I'm looking at something that isn't saying anything positive to me, how am I going to go and talk to my stoma nurse because they're reading something that's not positive either? How are they going to help me? I mean, I've been in touch with sex therapists because I'm developing leaflets and things like that to try and target gay males, lesbians, bisexual, transgender. Just something, not massively in depth, but something that's a little bit more personal. And I've even come up with challenges about this. Sending it off to get publicity and getting feedback to say, can we just have a male and female one? That's not the point. The point is not male and female. The point is gay, lesbian, bi, trans. The point is actually they can pick something up and don't see a straight person in it. It's not that the language isn't directed at them, the language is directed at their community. It's for their partner to pick up. It's those people that are curious, those people that aren't out, aren't out to anybody, that feel alone, that they feel they can't tell anybody, they can't come out, but you've just taken it away from them. It's for them to pick up and for them to look at and go, Okay, there is somebody here that is kind of understanding where I'm going from. Hannah: Yeah, and it's that bit of acknowledgement almost as well that you are part of that community and I say it's not as basic as male and female, especially at the intimacy side of things. So APR surgery or any sort of rectal surgery can Be such a major impact on somebody in that community, you know, a massive, massive impact. And, you know, we, we do speak about the barriers out there. And it's interesting you said about the literature because it was a day. I mean, I've already been very up with you that I used to have a stoma and I remember. when I got given my literature, which would have been about 12 years ago now. And all I can remember is every virtually piece of literature had the equivalent of like Mrs. Doubtfire on it. You know, a woman wearing like a tweedy jacket, a tweedy skirt, 60s or 70s. And I do think that's something that is being improved now. We are getting younger looking people coming out on literature now. We are getting even more sort of ethnicities coming out on. Literature. And, but I do think there is still that massive, massive gap when it comes to that LGBT side of literature. Like you say, I don't know of anything that's out there myself. There Kyle: isn't. There's a lot on intimacy. So if you read stuff, there's a lot on how to be intimate, how to have those open, intimate conversations with your partner, how to use things, how to use touch and things like that. But it stops there. Really, it doesn't say, how do I go further into the bedroom? How do I take this and take it further into the bedroom? How do I? become intimate with my partner again? How do I feel good? Or how do they feel okay? How do we know if it's safe? Is it safe? Especially for a lot of, like, from my point of view, for a lot of gay males, having any form of kind of rectal surgery, do I feel comfortable going up to my consultant and saying to them, where was the joint? Is the joint too low down? Is it even safe for me to do this? But I might have a rectum, but is it safe still? Hannah: Yeah, yeah. Would the surgeons even feel comfortable? Answering that sort of question. Cause I think we've got some great nurses. We've got some great surgeons out there. I think as well as possibly, I know you mentioned about patients not being comfortable at talk about sexuality. I think there's a massive thing that a lot of nurses and surgeons and health professionals in general potentially don't feel comfortable talking about sexuality because it's not something they're aware of so much themselves. And it's one of those, you know, if I don't talk about it, I don't have to open up the conversation at all, almost out of sight, out of mind. Kyle: I think they're more concerned on curing them first. And because for such people that have got like being diagnosed with cancer or it's IBD, that sexuality kind of goes out the window because they just want to get cured. But then they never think about after. What's going to happen after and, you know, there's out there relationships are broken down because the partner doesn't know what to do. He doesn't know how to help the patient. He doesn't know what to do. They don't know what to do. And I think it becomes a stigma then, especially around the LGBTQ and it is such a, what's considered like a vain community as well. So especially in the males, it can be quite vain, then you lose body image as well, there's no, it's getting your attractiveness back, and it's feeling okay to do it, it's having open, it's being open with your nurses, it's having them be there, but it's having them be there. And the nurses being open and honest, I think if anything, if a nurse just said, I don't know, I really don't know. Yeah, Hannah: that would be more honest, rather than avoiding it, like the, the sidestep there, oh, just side round that one a little bit. Kyle: But I've been in touch with sex therapists, and they don't know, they don't know, especially when it's mentioned about an APR, it was like, I don't know, do I ask, do you ask them to switch roles? Do you ask the active one to become more passive? Do you ask the passive to become more active? Like, do you want them to switch roles? They may not be comfortable switching roles. And I said, but there's nothing there really for them to grab onto. There's literally, you've had your surgery, your stoma's okay, everything's okay, your stoma's great. You deal with the rest on your own. Hannah: Yeah. Come on, the rest is up to you almost. Kyle: Yeah, if in doubt, go to your GP. Hannah: Collar Plus Professional offers a lot of educational material for specialists, nurses and healthcare professionals. Visit collarplusprofessional. co. uk to find out more. Going back to language being used again, and I think you'll agree with me, it's not just language that's being used. I know it's something I came across when um, one of our nurse managers at Choloplasta, Pip Chandler, she did a case study on a patient that she'd come across and it was, this lady was in a same sex relationship and she was going through cancer surgery and she'd gone to her nurse at the time with her partner and they were discussing her surgery, they were discussing the future and once This lady had introduced her female partner, so same sex relationship. She said there was no eye contact from that moment onwards. And from that moment onwards, she admits she didn't really absorb what was going on. All she felt was that she wanted to leave. It's amazing how, I think, I think even more so, potentially, throughout COVID, we became a lot more tuned in with people's overall body language and not just about eye contact, things like that, because you couldn't, you had very little with the way of facial expressions, things like you had eye contact. And I think people almost became more reliant of that eye contact, that overall body posture, and To feel that somebody thought like that that they couldn't even absorb, you know, really important information they were being given because they didn't feel like the nurse was on board with who and accepting with who they were in general day to day life, I think is so, so sad. Kyle: I do think that, like I say, you know, being a young gay male in the stoma industry, I do feel like, me personally, I do have some, kind of a unique, aspect is a very, very small amount of people get to look into this and get to, and I feel, I feel quite proud to be able to have that passion to say, hang on a minute, there is something wrong in the healthcare industry that we're not, and it's like, it's not just, it's everything, it's everywhere. stoma nurse's point of view, I feel quite proud that I've got the insight to have that kind of passion to kind of go, something's wrong, like something kind of needs to change. Like, it doesn't need to be a drastic step, it doesn't need to be a whole change of the system. I think it just needs to be something where the nurse and the patient have the comfort to be able to sit in a room together and be open and honest with each other. Yeah, absolutely. And I think if a patient can walk in and go, Yes, I brought my partner. I don't know, for example, my other partner, Tom. I brought Tom with me. Alright, okay, how long you been together? Like, it's not a deal. Like, it's exactly what you'd say to my nan and my grandad. Hannah: Absolutely. And let's face it, as healthcare professionals, we spend most of our day putting our opinions on people to one side. You know, you get somebody rushed into surgery that's, you know, they've just committed a murder, for example, and then been run over afterwards. You can't treat that person any different because of your opinion of them. We spend our whole life having to put our emotional feelings behind us on something like that and treat the person that's there. Kyle: I just think it's more, more of a conversation starter. If that nurse turned to that patient and just said, I don't know, I actually think a patient would feel more open to go a bit further because there's honesty there. There's no judgment. I just, I don't know the answer. I don't know how to help you. I don't know what the answer is, but I'll try and find out. And they go at it together. And I think the patient's got somebody on side with them that can kind of do it together with their partner so they're not on their own. And no offence, when you've had stoma surging, you've gone home, you're trying to deal with the stoma, once that's all okay, you're then trying to get everything back to normal. And I think you can get stuck in a spiral as to what is normal now, like how the hell do I figure out what normal is? And when somebody doesn't consider your sexuality as normal, You still don't know either. Hannah: Absolutely. You're sort of almost doubting things from all angles there and you're Again, it's that validation, that sort of acceptance of who you are. And all of a sudden, like you say, stoma surgery changes things for anybody and everybody, but when other aspects of your life are being questioned and queried as well, it must be so traumatic. I mean, I I say I can appreciate the stoma side of things, but To have somebody basically feel like they're questioning Kyle: things. It's little things, yeah, and it's little things like, for example, like when I take, when my, my son had to go to A& E, I took him to A& E and my partner came up to us and the receptionist went, are you uncle? I was like, no, he's his other dad. Like, he shouldn't have to really, somebody should have to assume that his other dad is his uncle, like he's got two dads. Like, he said to you, where's my son? That should really be enough for you. Yeah, Hannah: that's a bit of a hint in the situation, isn't it? Kyle: Yeah, but that should be enough. It shouldn't be somebody then tries to correct him. Yeah. And stoma care, we, when it comes to sexuality, we try to correct something when actually there's nothing wrong. Hannah: We are a sort of, as a healthcare professional, we are fixers though, aren't we? That's what you try and do as a healthcare professional, you try and fix things and I think Kyle: Sometimes things can't be fixed. Yeah, Hannah: or it doesn't need to Kyle: be fixed. Sometimes, yes, they've had the rectum removed. There's nothing you can do about that. It's not about it being fixed. It's about somebody turning around and saying to them, I get it. Yeah. I get it. Hannah: And I know we've spoken before about how to open up those conversations and it's We're not asking people to go bulldozing out there and go Well, what's your sexual orientation then? It's, we're not asking or expecting people to bulldoze in like that. It's like, who's your next Kyle: of kin? Hannah: Yeah, mine was, who do you live with? Kyle: Yeah, any children at home, partner, anything, next of kin, do we got their contact number? It's just, it's exactly what we'd say to, I'd say to any person, oh, Next of kin. Oh, is that your wife? And as soon as you say name I'll just go Is that wife, husband, son, daughter? Like, what's their relationship to you? Just so I know, I'm not ringing up your thinking I'm ringing your wife but it's your daughter I'm not ringing up your daughter but it's actually your partner. Because let's Hannah: face it, we've all been there, we've all done the Eris phone call haven't we, where we've got somebody going, is that Mrs So and so? No, it's the child, oops. Kyle: Yeah, so I think it's just, open up those conversations, but I think it's just taking the time to, and it's also for those people that are not out to anybody, that are hiding it inside, and don't even have it admitted to friends, family, or anything, that potentially some of the questions in the language that you use. upsets them, but they won't ever tell you because they've spent so long hiding it. Hannah: And like I say, just having that little bit of literature there might just give them something. Kyle: I mean, somebody would tell, these leaflets are designed, like, it may just be somebody that hasn't told anybody. I mean, and nobody should have to tell anybody anything, but hasn't told anybody anything. But Pixar was leaving, knowing that actually West Ominous. is there. They understand they are looking at things and the, this is target just for us, just for these people that actually they can then pick up that phone and potentially start a private conversation with somebody to make it more honest and a bit more open. Hannah: Because stoma nurses, you do end up being that go to for patients somehow, don't you? Stoma nurses, we are, I mean, you're, you are the unicorn. I've already called you that before, the unicorn with your rare vantage point. But in general, there is something about stoma nurses It does make patients open up to, you've probably been in the same situation as me. I Kyle: think it's because we see them at their worst. Yeah. I think you see them at their worst but then you go home and you see them at home and you see their family life, you see what their lifestyle is like, you get to know their lifestyle, their children, pets. You know, their relationship with their parents, if they really have one, you kind of become, especially with a lot of my patients, I get to know mine quite personally. Like when they ring me up now, it's not really a professional relationship that I talk to them in. I talk to them like I'm talking to anybody. And I think for so many nurses, because you see them at a point where body image has changed. Their bowel function's changed, you know, they've gone through cancer diagnoses, everything's changed, Hannah: kids. Basically, they're most vulnerable. Kyle: Yeah, and you've kind of coached them out of that to wherever possible. I think they do get a relationship, but I do think that sexuality is the one thing that I think they struggle to talk with, because predominantly stoma nurses, it's one of those careers when you go into it you don't go out of, but as a result, it can be a lot of closed minded people. Hannah: There's so many stone nurses, I mean, and thank God with all the change and things like we've got stone nurses that have been in the role for so many years, and they've got so much experience, and unfortunately that sort of, I'm going to have to be careful how I choose, I don't want to, but the generation now that sort of almost started that CNS service now, they're all coming towards retirement age now, and they're taking so much knowledge. away with them. It's almost frightening in a, in a way that we're losing those nurses. But like I said, we are getting people like yourself, the young guns come through with, with brand new sparkly ideas and new ways of thinking. Can we not keep you all on now? I know we're not allowing good stomach nurses to ever retire now, basically. Kyle: They can take a week's annual leave. Hannah: Yeah, there we go, that's being very generous, we'll let them have a week's annual leave and maybe come back on like part time hours, but that's Kyle: about it. But I think it's a unique kind of service that they offer to patients because you have got the years of experience and knowledge with the young minds that are wanting to change and make things more inclusive. And I think moulding them two together, it'll be a service that isn't stoppable, it'll be a service that if they can be done right, It'll be done right. Hannah: Absolutely. And I think it's stoma nurses. We are naturally almost curious as well. We do want to improve things and we do want to, and we are so passionate about patient care. We, you know, you, when I say, cause you do get that unique relationship with a patient as a CNS, you think, I don't think you get within. other aspects of healthcare that you do with the CNS. You are, I say you're almost like friends with your patients. You are like a friend, a family member to them. Yeah, Kyle: you do. You become quite close to them. And like I say, and I think it's really fortunate that you have this wealth of knowledge. Over here, and then you've got this youth and kind of want change, want, you know, quite sometimes quite radical changes, like people that wouldn't challenge the NHS like the young, like this youth's doing. I think if they can come and meet in the middle. and have this kind of wealth of knowledge with all this you've been putting it all together. I don't think there'd be a gap really for anybody to slip through. Hannah: No, absolutely. Absolutely. It's almost like closing off all those gaps and making it water tight. And actually it would be a service that would be inclusive of absolutely everybody. I mean, how amazing would that Kyle: be? Exactly, and I think it would be something that's an open minded service because we are open minded dealing with people's bowel functions. That's the thing. We are open minded. People have got a pouch on their tummy. Like, we're open minded. We know we're going through there. It's about being open minded to gender, sexuality. We take religion on board, and we take all of that into account. We should really be taking on sexuality as Hannah: well. You saying that brings me back to that case study that I was talking to you about earlier. This same lady said that, how can it be that we were comfortable to talk about poo, but we couldn't be comfortable when it came to our sexuality? Most people don't feel comfortable talking about poo. So why is it that they could feel comfortable talking about their bodily functions, but not about who they lived with effectively. How is that? Kyle: I know. And I think we take into account, like we say, religion, we take disability into account. We take all of this. But I think it's because you can look at somebody and, you know, of human natural assumptions, assume what religion they are. You can see somebody was in a wheelchair, because this isn't something you can say. I think it's something that just goes, that can go back there, but actually it should be along the same as these. Religion's important to some people, and the type of clothing they have to wear for religion and things like that. You have to take into account in the LGBTQ is, for some of these people, BDSM's part of it. They have to wear harnesses as part of their intimacy. If that's the case To bring them to sightings with them, get them to put the harness on, get them to show it is not an issue. It's Hannah: only similar to a wheelchair user that has to wear a regular seat belt. You make sure that you knew where that was positioned because that's a regular thing that they're using. Yeah Kyle: and then it's just finding how you'd get the patient to feel comfortable enough to bring that in and if you could bring that in and Something else, like I say, there's, my sister's a lesbian, so I speak to her about lesbians, and she's like, so yeah, she was like, sometimes she does wear sex toys, and she has to put a harness on, and I was like, oh, if you're having a stoma, where would your harness sit? And she didn't, and I was like, but that's exactly where I'd put your stoma. But I wouldn't know that, unless she brought that with you. And it's Hannah: not because I said bring, but if you've had that open enough conversation beforehand, they could even put their own little marks on their own tummy before they came in if they didn't want to come walking through the hospital with it or something like that. Yeah, Kyle: my harness sits here and here, they're the belts. I don't know, that's brilliant. So I just think there needs to be something that can be thought about as to how we alter things. And it's not even just for the LGBTQ, it's for straight people as well, there's some people that do do BDSM as well. That part's forgotten about. But like I say, I think it is all going in the right direction. Slowly. But it's as if it's going too slow. That's my point, is it going too slow? Or does it need to pickle pace a little bit? Sort of Hannah: like, the area itself seems to be advancing quickly, but we're not necessarily keeping up with the times as we go along with it. It's like snowball effect, isn't it? It's like the snowballs rolling down the hill and getting bigger, but we're still trying to run behind it almost. the Kyle: conversation needs to be open. I mean, I'm trying to hopefully put something out there for our patients in our area and for staff in our comms in the trust to try and have anybody who is LGBT to come forward and actually tell me what they want Hannah: to see. And on that note, what I will say is, um, Kyle's already said that if people want to ask him questions, or again, if they've got any ideas of things that they might like to, hear and see on that. If you just contact myself through the Coloplast Professional website, then I can pass all that on to Kyle and then we can feed that back any more information because I think that would be really good. Like I say, almost a collaborative effort Kyle: going on. Yeah. Like I say, I'm putting a comms out in our trust to try and get. Whether it's patients, staff, anybody that is of the LGBTQIA plus community that has got any sources to what they think would make a good change. I can do it, but I'm only one person and I don't want to be biased. I can't say what I, what I want. I'd rather get a collaborative thing as to what other people want as well. Hannah: Thank you so so much Carl for spending time with us. It's been absolutely brilliant, so so insightful and I think you've certainly, as much as I've looked into it myself, you've given me things to think about as well, so I imagine you've given a lot of people out there things to think about. So I really hope that in the future we'll have caught that snowball, we'll be catching it up. Thank you so much, and for everybody listening, we'll see you next time. Thank you for listening. To see more of the wide variety of education we offer, please visit co plus professional.co.uk. See you next time. Narrator: Stoma Incontinence Conversations is a vibrant sound media production for Coloplast Kyle: Professional. ​