Season Seven Episode One: Urology Awareness Month v1

Introduction

Hannah: Welcome to Stoma and Continence Conversations from Coloplast Professional. I'm Hannah, Ostomy Care Associate Education Manager at Coloplast. Working in specialist care, I know that stoma and bladder and bowel issues impact the lives of those you care for. This podcast is here to support your educational needs and help you in supporting your patients. You'll hear from fellow healthcare professionals and experts by experience. Discuss the latest hot topics in the world of stoma, continence care, and specialist practice. Interview 1 Hello and welcome to this podcast, a very special podcast this month. Some of you may be aware that this month is actually Urology Awareness Month. So, so we're talking all things urology. I'm lucky enough to be joined by some very special guests and I'm actually going to allow them to introduce themselves. So, first of all, can I just bring in Mary and say hi, Mary, if you'd like to tell us a little bit about yourself, where you're from and your connection with Urology Awareness please. Mary: Hi, Hannah. Yeah, I'm delighted to be able to join you today. I'm a former consultant urological surgeon, but I am now the chair of the Urology Foundation. That's a UK based charity that covers the entire breadth of urological health and disease. Hannah: Wow, and how long have you been doing that for, Mary, did you say? Mary: So I've been the chair of TUF now for just over a year, but before that I was a trustee for a year and a half as well, but I've been involved with TUF throughout my career. Hannah: Fantastic. Thank you so much for joining us and next say hello to Michelle. How are you? Michelle: Well, hello. Thank you for having me. Also excited to be here. So I am Michelle and I'm a specialist nurse and I work as the Neurogenic Clinical Lead for Coloplast and I've been with Coloplast for a few years now and prior to that I was in the NHS as a specialist nurse for many, many years. So yeah, I'm happy to be here. Hannah: Thank you so much for joining us. And last but by no means least Dani. Hi Dani, how are you? Dani: Hi Hannah. Hi everybody. Thank you for having me. It's lovely to join you today. I'm from Hampshire and I spent seventeen years in the NHS in anesthetics and surgery. And then unfortunately the chronic conditions that I've had since birth became much worse and I was medically retired. After that I started a whole new pathway and went back to university and did a degree in medieval history and now I'm doing my masters in that as well in Winchester and I've been a catheter user for on and off for intermittent self catheterisation since a teenager, more recently full time and I started as an ISC ambassador for Coloplast in June of this year. Hannah: And you say you had chronic health conditions there, Dani. Is that related to why you went down the self catheterization route. Can you tell us a bit more about that? Dani: I have an immune deficiency, so I always have done a lot of opportunistic infections, so I get a lot of pneumonias, but I also get a lot of UTIs, which started when I was a teenager, and they've become progressively more complex and that has led to recurrent pyelonephritis and they are getting quite hard to treat now, and they're becoming more prolonged, which has led to urinary retention, but I also have endometriosis, which involves my bladder and I had a bowel tumuor removed when I was fourteen and had a hemicolectomy, which I now have a lot of adhesions from that surgery, so there's a lot going on in and around my bladder, but for some reason this year with the current infections, I've just been in retention and had to start using the catheters full time. Hannah: Gosh, and how have you been managing with that? Do you have a daily routine when it comes to that? Dani: Yeah, it's slowly getting easier now and I feel like I'm becoming a little bit of an expert on myself and how catheterisation works for me personally, which is really interesting going from catheterising patients to doing it yourself. I thought I would find it really easy, but it hasn't exactly been a smooth transition up until recently, but I feel like I'm finding my groove with it now. And yeah, it's starting to fit into my daily routine and I'm starting to see the benefits of having a really solid routine with it compared to before where I was only doing it very intermittently. Now it's definitely given me benefits to use the ISC catheters around three times a day. Hannah: Can you tell me a little bit more about UTIs, how you get them in, especially for yourself, Dani? And so, why does that importance there of regularly emptying your bladder, the hygiene, routine, hydration, if you could, almost, I'm going to throw it out there and say, discuss. Dani: They were every three months or so, and in the last two years, I seem to have developed a very drug resistant bacteria that seems to be not wanting to leave the bladder or the kidneys, and it's particularly E. coli and Klebsiella pneumonia that I get and what once would have been an annoyance or a really tricky week of needing oral antibiotics now, unfortunately, means multiple courses of oral antibiotics and then usually results in needing IV medications and hospitalisation because it leads me down the road of sepsis. I've had three instances this year alone, so they've become much worse and they have started to really, really impact my life a lot more than they used to. And it's a very difficult situation. I think a lot of people, when you say the word UTI. Don't necessarily see it as how serious it can be, and how much it can, I think they treat it with something very minimal, and it's just an inconvenience, or have you drunk, you need to start drinking more cranberry juice, or possibly even questioning your personal hygiene, and it can be very, very difficult to make people understand that for some people, they are very frequent, they are affecting much more than just a little bit of your life. It is a really big deal. So, yeah, it's been difficult. Michelle: I'm really sorry to hear that, Dani. It makes me feel very sad. You say that about the fact that people don't take them seriously. I think you're absolutely right. Bladder and bowel not taken seriously enough, actually, I think it's around one to three percent of all GP consults are to UTI. So, it is happening. About fifty percent of women will get one at one point in their, whether it's one or unfortunately for you, multiple. So, it's something that's happening a lot. We just don't talk about it. Women as we get to menopause age, so much more likely to experience urine infection. Do women know that? I'm not sure that they do, do clinicians know, example, just with that group that estrogen is a great thing to be giving topically. I'm not convinced that we know about these things. I know your condition's slightly different and E Coli, just again, I think it's eighty percent of urine infections from E. coli. E. coli loves a lovely warm bladder with some residual urine in there. Likes to get into the bladder wall and, burrow in there and then come out and rear its ugly head. ever so often, possibly what you're experiencing. But I'm interested to know, who manages it? Is it your GP? And what do they do? Because this is another issue, like what is a UTI? We're all defining it differently and people are using different ten to the powers. And, I'm just interested. Dani: I think care has got better recently. So for a very long period, it was just managed by the GP and it was always flagged up as gosh, you poor thing. You do have a lot of these, don't you? And it was always very much, even though I would remind them that it's really not that unusual in people with an immune deficiency. And the fact that I would go through periods after my surgery where I would catheterise, I needed to catheterise after the bowel surgery for about six months and then life seemed to go back to normal. So I stopped and I would try and flag up with GPs and quite often I would see different GPs who weren't aware of my history that I'm at times a catheter user. So I have a little bit more risk factor there, but I also have this immune deficiency. Quite often, you'd get sent to urgent care centres where they didn't know your history at all and be almost sent away with a three day course of trimethoprim and very frustrating, especially being in the NHS yourself, knowing that that's not going to do the trick and then that leading to multiple courses of very strong antibiotics that ultimately knowing deep down with dread that this is not going to work and I'm going to end up with another hospital admission. It's got better. So, especially since becoming a full time ISC user, I do feel like there's more care there and I'm now under a urologist who's taken very specialist interest in me and doesn't find me unusual for once and it's really been such a godsend in starting me on Hiprex and understanding working with microbiology that every time has to be cultured and that I was on prophylactic antibiotics under Great Ormond Street for fifteen years as a child. That we are facing difficulties with this so that we just need to find a different pathway for me. And it's not a one size fits all for people with UTIs. And it's so nice to finally have had that recognition and I now have access to a rapid access clinic so I can almost bypass the rigors of going to the GP and facing somebody who's not necessarily going to treat it appropriately. So I'm finally at forty years old getting the help that I need. But it's frustrating because I wonder if I had got that earlier, would I be where I am now. Hannah: I'd like to ask you this Mary, is this where the Urology Foundation can help and support a bit here? Mary: Well it can, definitely. I'm really delighted here that Danielle has found a urologist at long last and that's one of the perennial problems we had and I faced as a urologist, was that patients who sort of fall into the more complex UTI, recurrent UTI group, just often don't get to see a specialist. And, time is lost really. I'm delighted that there is more and more availability of specialist, multidisciplinary recurrent UTI clinics. So you will often find and trust that urologists are working closely with infectious diseases colleagues and microbiologists to tailor treatment because that's what it has to be. It has to be tailored to the individual and Daniella is not alone as Michelle said, fifty percent of women will have a UTI in their lifetime. But of those. a small percentage will go on to get really persistent recurrent problems. And Daniella falls into a group of about 2.4 percent of women who get these really difficult to manage complex chronic recurrent urinary tract infections. And I think the Urology Foundation has a role to play in basically waving the flag and bringing not just the whole of urology health and disease out of the shadows, but subjects like chronic urinary tract infections out of the shadows, into the mainstream, get it as part of our dialogue and our communication. Let's start a conversation about this and let's remind people that urology problems affect us all. So one in two of us will have a urology problem in our lifetime which by default means that if you don't get affected personally, you are very likely to have a loved one or someone close to you that does. And society has often seen urology problems as a bit sort of embarrassing, something that you don't talk about, something to be ashamed of. And I've always been credulous about this. We all have to wee, we all do it, yet if there's a problem with it, we seem really embarrassed and ashamed to talk about it. So that's something the Urology Foundation really wants to change. Hannah: I mean in stoma care, I always refer to it as the poo taboo. I don't know if you have a similar thing in urology that you refer to things as, but nobody talks about it. Mary: No, I'll have to come up with something that rhymes with wee or pee, won't I? Hannah: A little tagline. Mary:Will have to come up with a catchphrase. Michelle: Well, I I've been trying to, when we post stuff, use Loo taboo, because that covers the Loo taboo, yeah, I like that. Yeah, #Lootaboo, so we should start that off, guys. And also Toilet Talk. Mary: Toilet Talk, definitely. We love to talk about wee and poo. I do anyway. Hannah: But that's the beauty of having things like this Urology Awareness Month. It gets those conversations out there. I always say with things like this, even if it just gets one or two more people having those discussions, it's a great thing. So even if after people listen to this podcast, a couple more people have that discussion in their daily life about wee or poo, loo taboo, we're doing a good thing here. Mary: Urology Awareness Month is now in its tenth year. This was a campaign that the Urology Foundation started back in 2014 and it's been growing year on year and I'm really delighted how it is growing. This year our focus is on bladder health, so everything relating to bladder, which obviously includes incontinence and bladder cancer. So each year we choose a focus. But, of course, as I said before, we do as a charity cover the whole spectrum of urology health and disease. So it’s about basically raising awareness both with the public and with professionals, and I think that's really key. So we work to break down those taboos, get people talking because it's in line with our overall work, which is that we aim to improve healthcare outcomes for urology patients and suffering and basically ultimately save lives. Dani: I have to say, finding the Urology Foundation, I'm obviously quite late to finding it, it has made such a difference to me to connect with other people and find the updates and seeing that things aren't just staying stagnant, there is progression, and that gives me so much hope for the future because for so long I felt like I was on my own and kept it really to myself because I think so many people make it such a shameful thing. And while stomas I find have been normalised, we're seeing them on TV, we're seeing them being normalised as something and they are being talked about more, but I do find that continence issues and especially catheterisation and UTIs. It's got a long way to go and we have to keep the conversation going because otherwise people like me feel that it's something that we're doing wrong. We shouldn't be talking about it. And that's where the education of people has to come in. And I've been asked recently, why do you post about that on your Instagram? Why do you talk about something like that? And I really felt quite sad that I had to defend that and yet the bounce back from that that really cheered me was seeing in my inbox three or four people coming up and saying that post. Thank you so much. You've just echoed how I feel every day and we need to do this more. So what can we do? And you're seeing little pockets of it actually moving and changing. And the urology foundation and things like catheter awareness programme and especially this month in particular, all the drive for awareness, it makes such a difference to us. Hannah: Now, one thing I want to, we're speaking about creating more awareness is, it's something you were involved in quite heavily, Michelle, the catheter care challenge. Can you tell us a little bit about that, because I think that was a great awareness tool as well. Michelle: Yeah. I was really, really privileged along with a couple of other colleagues from Coloplast and also from the Urology Foundation, the MS Trust and the Spinal Injuries Association. We basically got together and in July we did something called the #CatheterCareChallenge. We took that to parliament, and we had lots of parliamentarians and their staff come and visit us. We set up basically a fake kind of toilet cubicle and we brought a toilet and a toilet seat into parliament around breakfast time. And we had parliamentarians and, other people that work within parliament come and we did like a, what could I call it, a reverse escape room, I think. So we basically locked them in the loo. In the #LooTaboo, and then we had QR codes and they had to basically scan the QR code and answer a question around urine infection, around catheters, because the whole point of it really is to upskill people. As you said, Dani, people don't speak about catheters so much. So many questions that are to me, who works in this. area, I suppose, obvious. You just realise that actually people aren't aware at all. People don't even know what an intermittent catheter is. They think about catheters, they think about indwelling ones, as I call a urine handbag. So we did that. We got some pledges off of some MPs that said that they're going to try to move forward and help us get the word out there. We had lots of excitement around social media. We got it, the information retweeted and we had it reposted by lots of individual people, but also some charities got on board. So we saw Prostate Cancer UK, Eric, Patients Association, some of the bigger ambassadors for SIA reposting the information. So yeah, we just wanted to do something a little bit interesting to create a bit of interest. We're hoping to take our toilet cubicle on a road show. Hannah: A toilet tour! Michelle: A toilet tour! Hannah: Toilet talk on tour! Michelle: Oh, that's it. We've got it. I think we need to rebrand our hashtag toilet talk on tour. So yea if anyone’s interested let me know. We will come and do a #ToiletTalkonTour Mary: Well, I have to say, don't get me started on toilet cubicles and the inadequacy of in the workplace and public spaces, because, one of the things, that the Urology Foundation is working towards, and it's one of my personal passions, is to improve facilities for everyone. So, we all know that most female toilet cubicles have sanitary wear disposal bins, but often they're not adequate for people who are catheter users or stoma bag users. A, the hole in them is too small and B, they're not the right place to be able to dispose of your appliances. And so really, it's not just men's toilets that need bins, but it's everyone's toilet that needs bins and bins in a private setting within the cubicle for people to use and the space, the space to swing a cat would be useful if you're someone who uses a catheter or has to change a stoma bag, a cubicle that you walk into where you actually have to straddle the toilet in order to shut the door is not going to be a great place for you to have the space to get out your appliance, Be aseptic and, use your appliance safely and, and comfortably. Dani: It's such a nightmare. It literally gives me kittens. And then when you find one that that gives you all of that, you're like, oh, I can come back here. . Hannah: Do you have a league table of toilets Dani? Dani: I do. I do. I'm like, well, we can go to that pub cause they have a really nice toilet. Michelle: I know we're joking about this, but it's such a serious thing. And I think, a lot of my work, not all of it, but a lot of it is with neurogenic patients. I think about people with MS and spinal cord injury. This is what keeps them in the problems that they have with toilet access or actually just getting the right care for their bladder and their bowel. And one of the questions I would often ask patients. How, with your bladder or your bowel, are you planning your life around it? Are you able to take your child to school? And the other thing that really annoys me while we're on the subject is. When you see places that say these toilets are for customers use only, we just do not have enough toilets and people just need to be sharing the toilets, share the toilet love. Can we hashtag that as well? Dani: There's just not enough understanding either. I've been so shamed. About asking to use a toilet or recently, since getting my radar key, which has made such a difference to me from Coloplast, but something that was supposed to make my life easier actually stopped me from going out for a little while because I got confronted by somebody who challenged me and said, you don't look disabled. You don't look like you need to use that toilet. You should be ashamed of yourself. And it was just like, do I now need to have a conversation on why I need to use it? Mary: Oh, that's really. sad, really sad to hear Daniella about the fact that people give you a hard time for what is a hidden disability. I would add that the Urology Foundation does do a need to pee card, which you can keep in your wallet. Now, it's not a magic key that opens all doors, but it allows you to conveniently, quietly show people in a shop and hopefully, or a public space and hopefully get access to a toilet without questions being asked, because you really shouldn't be getting twenty questions for something like that. Dani: I mean, it's hard enough as it is,, like we were saying before, the amount of times I've had to leave a toilet with my little black bag after I've used my catheter, wondering should I put it in a public bin, or in most cases actually sticking it in the black bin bag and sticking it in my bag to take home to dispose of appropriately, because it wouldn't fit in the bin, being petrified of the cleanliness with my immune system, and actually on many cases, not so much now, I'm getting better with it and finding places where I can be accessible and, so I can reposition myself and be comfortable and happy that the procedure is going to be as easy as it can be when you're out of your own home. But for a long time, it actually very much put me off going out or, and I was planning my whole day around when or if I was going to be able to pee. And for the most part, up until very recently, the answer was, I can't do that. Please don't ask me. I can't go there. I can't, I can't do that with you because, I might not be able to, and it impacted my life so much. And it's only recently since things like looking at the advice on from the Urology Foundation. Understanding that there are places, there are ways around this, and actually you just have to find them and have a little bit of self-confidence to do it, and it's made the world of difference. Michelle: You were talking earlier about, you said your urine infection got a little bit better. Is that since you started to catheterise more regularly, so I don’t know, maybe you're emptying your bladder better, more completley. Dani: I think it's a multi-faceted approach, really. Primarily it was the last pyelonnephritis that I had. I went into complete retention and where in the past it has resolved once the infection has resolved, usually after having a couple of courses of IV, antibiotics and spending another couple of weeks in hospital, it would usually get better. And usually when I was admitted, I would have an indwelling cap. And then go home self catheterising, but this time it just hasn't come back to normal. And I'm not that upset about it, if I'm honest, because the chopping and changing, never knowing if I'm waking up not knowing if I was going to be able to pee that day normally, or if I would need to use a catheter, it was very difficult. So actually now having a bit of routine is much better. And like you say, I do notice a difference because I don't think my bladder was emptying fully. And I think residual urine was a major problem for me. And I think now that I'm getting more comfortable with the routine, it is definitely helping to empty my bladder, but also education. So I've changed product. I'm happier with the product. I'm comfortable with the product. I don't feel in pain. And recently just going learning from other catheter users on the Coloplast ambassador day, I did, I had no idea about that you could reposition yourself to check for residual and to check before you finish and so all of that together combined with a really personalised, tailored plan with my health care team with urologist. I think all of that has combined to make the best of I'm always going to keep getting these infections. They are getting worse. We do have antibiotic resistance problems, but we can make the most of it. And that's what we're doing. Mary: Research has shown that. It only needs twenty mils or even less of urine left in the bladder to act as a reservoir for the bacteria. So part of trying to clear urine infections is to clear infected bladder away from the bladder regularly. So for a catheter user, that means using your catheters more regularly. For the rest of us, it means peeing frequently, but also making sure that you empty your bladder. So when you think you've finished, just wait on the toilet, give yourself time, count to ten slowly, whatever you need to do, and then try again. So, that's a really important thing. And I think anything we can do to decrease our personal risk of infections is really important. Daniella, earlier you mentioned about how it's really galling when people start trying to preach to you about hygiene technique and, how to wipe yourself properly. And I always used to say to urology trainees don't go telling an adult woman or man who's not had problems with UTIs for years. That suddenly what they’ve been doing all their life is wrong and they don’t know how to keep themselves clean. We all know that it's really important how we wipe ourselves from front to back etc and how we keep the genital area clean but in the case of people who run into chronic complex recurrent UTIs, that's usually low down the list of likely causes. It's usually multifactorial, as in Daniella's case. It's to do with bladder emptying. It's to do with the immune system. It's to do with comorbidities, et cetera. Michelle: I don’t know for any clinicians listening, we actually have put together a really, really lovely tool. It's our risk factors assessment tool and it goes exactly through that point just for patients who catheterise. But to go through it, it puts all of the risk factors into four boxes almost, but it's exactly that it is multifactorial. And if we're not as clinicians teaching patients about all of that, and Daniella, you made a perfect point earlier. You said it was only recently that you found out that you're supposed to reposition your catheter, to completely empty your bladder. You've been doing it for years and years and years. And unfortunately, that's the story that we hear regularly. And as you said, Mary, people just assuming it's, oh, maybe they're not cleaning properly, but actually, is it the fact that you're predisposed to recurrent urine infections because of diabetes or because you're postmenopausal. There's so many different things, but it's just, we really need to be thinking about this in a multifactorial way. Hannah: We can put a link to that in the podcast description there, Michelle, so that people can have a look and I'm sure if they've got any questions they can reach out to us as well then. Michelle: Yes, absolutely. Hannah: But thank you so much everybody. I mean, I've got to say from my point of view, I feel like I've learnt quite a lot today as well because I deal with the other side of the bladder and bowel. I'm very much on the bowel side. So to hear more about the bladder side of things, it's really been really enlightening. So thank you so, so much, everybody. It's really been a great pleasure to have you on. And I'd say if anyone wants to know a little bit more, we're going to have links for a lot of the things that we've spoken about in the podcast description. So please do have a look, but thank you so much, Mary, Michelle and Dani for joining me, and we'll see you all next time on Stoma and Continence Conversations. Stoma and Continence conversations is brought to you by Coloplast Professional. To learn more, visit coloplastprofessional.co uk.