Sula (00:00.216) So lovely to have you both here. Thank you for coming. I'm going to start just by asking you to introduce yourselves and then yeah, we'll get into it. Neha(00:06.83) My name is Neha. I'm a product consultant with a master's in health psychology. I help health tech companies drive behavior change and I'm also a women's health coach. And why am I interested in health is because I live with a rare genetic condition that impacts my respiratory system. And over the last couple of years, I've been dealing with a chronic UTI. So double the fun of two conditions and having to manage that. speaker-0 (00:30.914) Thank you for being here. I'm looking forward to exploring with you. Thank you. Cat(00:34.434) I'm Dr Cat Anderson and I am a very weird GP. I am a GP with a special interest, extended role in women's health and that is mainly extended role in complex, complicated women's health infections, so bladder infections, urogyne infections. Additionally, I am a menopausal. And a GP. speaker-0 (01:00.14) Incredible to have you here. And what makes you a weird GP do you think? What is it that got you into this area? speaker-2 (01:08.366) I'm a weird GP because really I started out life doing a medical microbiology degree and then I worked in research in science before I realized that I had a vocational urge and wanted to apply science into medicine and went back to university to study medicine. Became very interested in women's health after I decided to jump out of my hospital training. and recognise that there was a huge unmet need in women's health. In so many, not just the physical needs, but psychological, social, it impacted all parts of female being. And I'm just very nosy, very curious. And I suppose really I ended up pursuing postgraduate qualifications, shadowing various clinics, both in the UK and overseas. to see how it could be done better. I just was persistently nosy and more so than my colleagues. And it's very weird to be like that when you're a GP. Usually it's secondary care and tertiary care doctors that end up as key opinion leaders in the subject area. But I find myself in this position now and I believe that I'm, I think one of the only ones, if not the only, GP in the UK who's a key opinion leader and specifically persistently recurrent or chronic QTI. speaker-0 (02:43.918) As I was sharing before we were recording, I've just come from a research meeting with my colleagues in King's and we were looking at experiences of dismissal and the different forms that that comes in. And one of the recurrent themes was I'm just seen as this tick box, you know? So I fall in this box or I don't fall in this box. If I fall in this box, there's no other exploration. If I don't fall in this box, there's kind of like, oh well. That's it. So I think what you're saying there about being a weird GP and that curiosity is actually so important to a lot of patients. speaker-2 (03:18.208) Yes, I agree. And I think that it is unusual to have GPs that are interested, not just in specialized areas, but in specialized areas that where there are still questions hanging and aren't fully explained. So most people that are attracted into general practice will actually have these days a very fixed work pattern whereby they're working within very defined guidelines and they have to cover a heck of a lot of areas. mean, anything can walk through your door when you're a GP. You are a generalist. And so it's a case of knowing a little bit about an awful lot and very little in great detail. But then again, GP is the one job where you can specialize in certain areas. So one would think that we would be recruiting more doctors that are experienced in in narrowed areas. And indeed there are quite a lot that are experienced in women's health, but then very few seem to want to get experienced in this area that we're talking about today in persistently recurrent or chronic UTIs. Now, I think that's partly because it's not actually a fully recognised condition. So we recognise flash in the panacute UTI, we recognise recurrent UTI and we have medical definitions for those two, but we do not recognise the condition where The recurrences are so often that they're almost joined together or they are actually joined together and there's no gaps between episodes. And it actually evolves into a completely different beast when it becomes like that. And what is needed in those situations are better testing and better treatment pathways. But to achieve that, we need to actually get a proper medical definition for chronic QTI. but that is a work in progress that we are involved in already. But I think why it's weird for general practitioners is this is usually an area that is left for the hospital doctors who are more involved in research, but then maybe they're so specialized in their little areas, they haven't got that thinking outside of the box, that greater overview. And so they're not seeing the wood for trees. speaker-2 (05:42.412) I think that general practitioners attract more neurodiverse individuals because maybe if you've got something like ADHD, you're quite good at dealing with six different things at once and jumping from one thing to another rapidly. But it's also that neurodiversity that allows you to be very curious, very nosy and hyper-focused on one area. And I think that's where maybe my skills lay. speaker-0 (06:06.03) I'm going to come back to you as well Cat to explore that project that you've got going on to try and get that definition of chronic UTI. But Nihal, tell me bit about your experience presenting to the GP. speaker-1 (06:18.35) Yeah, well, my experience really started, you before the UTI is with my respiratory condition. I went back and forth for many, many years, trying to get a diagnosis. And eventually I managed to get a diagnosis. The average age of this, of PCD, which is the rare genetic condition is eight years old where you get diagnosed. was about 29. So it was a really long time. And I had been Obviously when I was younger, my parents would take me to hospital appointments, etc. But I knew something wasn't quite right. And so I kept pushing as an adult to get a diagnosis, and I managed to get one. But that really negatively shaped my experience of having to go back and forth and fight for something. And it's just exhausting. And no offense, I just really hate talking to healthcare professionals. Don't blame you. And all the admin that comes with a chronic condition. so anything that I could kind of do for myself, I want you to do that. So I didn't have to interact with the system. And that played out in a big way with my UTI because I would go back and forth with the GP to say that I had a urine infection. We would do a test, it will come back positive. And I know that's not always the case for everyone. And then I'd be given a course of three to seven day antibiotics. And then I'd keep having these infections. And because I lived with this rare genetic condition, when I get a chest infection, I have to have antibiotics for one month. I just didn't really think these antibiotics were really cutting it because my body is used to very strong antibiotics. And so over time, I spoke to the doctor and I said, why do I keep having these? What's the core issue? What's causing it? and how do we eliminate it completely? And he just said, we can just go on prophylactic antibiotics and see if that fixes things. But for me, I wasn't satisfied with that because it didn't get to the root of the problem. Why was I getting it? And I had these experiences with really strong antibiotics and I didn't want to go on long-term, know, antibiotic resistance. you know, when I do have these antibiotics, it just completely wipes me out. speaker-1 (08:36.588) And so I basically tried to do as much by myself and manage the condition by myself without having to need longer term antibiotics. And that meant my symptoms got much more worse over time and I habituated. And things were so painful. It was almost like peeing broken glass. That's how painful things were. And because I... You know, I was thinking I didn't want to be on these long-term antibiotics and I don't like the feeling of being wiped out with antibiotics. I avoided the situation. And that was my biggest mistake is not just going on a straight course, getting the antibiotics and dealing with things earlier on. But of course I was in that avoidance phase and I didn't want to kind of interact with the system. I, know, that all takes a toll in your health. you end up trying to figure it all out by yourself and be really hyper independent. And that's not helpful either. You need to be able to work with people to get to the root of the problem. speaker-0 (09:45.772) You're illustrating something that so many people will relate to though, that sense of, I guess, threat within the healthcare system, right, of I'm not being heard. So that automatically is uncomfortable. So I don't want to go there. And also I'm not being heard and therefore I'm not going to be helped. So what's the point? So you can see why you become disincentivized to do that. And I think, yes, it's important to recognise the negative impact on that because obviously we want to avoid that negative impact, but you're stuck between a rock and a hard place often. It's not like it's that clear when you're in it. Tell me a bit about that difficulty from the GP's perspective. You you must see, well, I know you do see a lot of patients who've had similar experiences. speaker-2 (10:30.446) Absolutely, it's a common thread. think it's useful to say that these days it is more widely acknowledged that you can have expert patients. I think the healthcare regulatory authorities have been very good at driving this recognition and know, sort of the all the educational systems for postgraduate education, etc. have really driven the fact that doctors have to be less paternalistic. It's more the patient-doctor partnership. So I think the younger generations, they should be less prescriptive and more cooperative. And in that area where there isn't so much known, it's not written into guidelines. I think it's really important that the patients speak up for themselves and they do a little bit of research beforehand on their condition and they go in fully armed. And I know there are certain patient support organisations, especially around chronic QTI that are very good, QTIC, C-U-T-I-C, campaign for chronic QTI. They have information to take to your GP. And quite often, GPs will not have heard of chronic QTI before and will need the education. And the thing is, they may have a tendency because they're rushed, they've got a 10 minute appointment, they think the patient's wrong and there will be a bit of a tendency to say, oh no, no, no, the dipstick says no, so there's nothing wrong with you. But if you can then say, actually up to 40 to 50 % of dipsticks in acute UTI are negative, more in recurrent UTI and even more in chronic UTI, and here is the reference from the published evidence to say that, the GP will have no answer to that because you know more than they do. the GP should not feel bad about this because it's impossible to have that level of knowledge about every area of medicine that a GP has to cover. And any decent, empathic GP has got to be honest with their patient. If you do hit a GP that has a level of self-assuredness where they're not willing to take that information on board, speaker-2 (12:55.544) That's bad luck. And I'd go and book with someone else if I were you. And quite often, if you get a receptionist who's an experienced receptionist in that practice, they'll know, they'll know who it is. It does end up with those of us who are sympathetic being absolutely slaughtered with, you know, patients trying to get in and backlogs. But actually that's okay. And hopefully that GP that is sympathetic to it could maybe encourage their colleagues to open up. their mind to the fact that we don't know everything about everything and there's a need for additional medical education of healthcare professionals here. speaker-0 (13:35.406) Yeah, absolutely. You were making that point, which I'd like to underline that you've got the option to ask for a second opinion, go to a different GCP if there's difficulties there. Just coming back to you, when you were talking about that putting you off the healthcare system, it's interesting how quickly that happens, right? Where that's an option. I can go back and I can try somebody else, but it feels hard to do. What was your experience like? speaker-1 (14:00.77) Well, I guess with me, because I've had that issue with my respiratory condition, so I've already had that experience built up. So for me, I just didn't think it would result in anything. And so for me, I actually then decided to go down the private path because I wanted to get to the root cause of why this was happening and prevent it happening again in the future. Otherwise it would just be the same thing again and again. And it's a completely different experience because They take you seriously and they have time to answer all of your questions that you might have. You're looked at as a whole person and they try and get to the root problem of it. speaker-0 (14:39.394) That's such an important distinction as well. When I was having this meeting with my colleagues about dismissal in the healthcare system, that was a theme that came up again and again, being seen as a whole person as opposed to a body part or a couple of body parts. How do you incorporate that in your practice, Cat, the holistic element of things? speaker-2 (14:58.35) It's really hard within the NHS because of the limitation in time. But the one thing that you've got in the NHS, especially as a GP, you've got a smaller practice area. what you have to do is chunk it up within the NHS and see your patient, try and reassure them, explain to them what the limitations are, but reassure them that you will be seeing them again and make sure that they're booking a follow-up appointment. Within the private sector, as you said, you can have much longer appointments. And within that appointment, you really do need a long appointment because yes, you have the physical issues to deal with, but you also need to acknowledge, at least acknowledge, the social and the psychological issues because this chronic disease impacts every single aspect of life. It drives a cart on horses through your life, psychologically, socially, the sense of wellbeing. can be really affected. speaker-1 (15:59.538) And I would just add to that, that I couldn't exercise properly, I couldn't sleep properly. And these are fundamental things that you need to have in your life to function well. I couldn't walk properly. And so what do you do? It really does have a massive impact. And then you're in an incredible amount of pain. And then you have to balance everything else in life, work, social, et cetera. speaker-2 (16:25.342) Devastating. Very scary. It's interesting and one of the things I do when I'm talking at conferences and I'm teaching GPs is I will sometimes just give them a couple of case examples. I've had plenty of ladies come to me who have developed chronic QTI after they have been treated for breast cancer. Now it used to be the case before we got the evidence that proved that vaginal oestrogens, very low dose, are incredibly safe, so safe they can be used. women who've had breast cancer, even estrogen receptor positive breast cancer in conjunction with the oncologist's knowledge because they're incredibly low dose and they usually they're on medication that blocks it from affecting breast tissue anyway. But when you go on to breast cancer treatment, it quite often induces an early menopause if you haven't already hit menopause and the depletion and estrogen to the bladder tissues and the vaginal tissues can result in a higher risk of getting UTIs. And if you do get UTIs, a higher risk of getting recurrent or chronic UTI. And so you will see as a practitioner that deals with this condition, you will have a lot of ladies coming through who have this history of breast cancer and have been on this pathway and have developed their UTI problems subsequently. And if I had a pound for every woman that said to me, I didn't realize how devastating this UTI problem would be. It's so much worse than my breast cancer problem. And actually I might have chosen not to accept the treatment for breast cancer if the UTIs had come beforehand. Because at least then there would have been a way out. And I've actually been in the situation where I've had a couple of patients who had chronic UTI before they had breast cancer. We got it under control. They then had the breast cancer diagnosed. And they actually said to their breast surgeon, if the treatment for the breast cancer is going to bring the chronic QTBI back to the extent that it was previous to the treatment, I'd rather die. That's very powerful, isn't it? And it can be tricky. It can be very tricky because the treatments can make things very tricky to manage. Of course, we do our level best. speaker-1 (18:32.846) Wow. speaker-0 (18:44.878) Yeah, that's so impactful. And it also reminds me of a conversation, I think it was with Angie Rantel saying similar, she'd also had patients who'd had both cancer and the UTIs and said, you know, I would choose the cancer over this because it's so devastating. That's so powerful as an illustrator of the impact, the devastation. So then it's really hard to be in that experience, right? Go to the doctors and then not see that part of the experience, would you be able to explain a little bit what that feels like as a patient? speaker-1 (19:21.834) You just feel quite hopeless. You know, you feel like there's no path forward. I know that there were points in my time, during my experience, I just felt like I couldn't bounce back the same. So you don't have the same vigor and energy to kind of negotiate back. You just lose that energy. And then for me, because I was trying to manage things myself, I was constantly scanning for triggers. Like what would set this off? And your mind is so active. it my cycle? Is it something I ate? Is it something I drank? You know, am I tired? And it's just really, really exhausting because your mind is always going. And then what would happen is I'd have symptoms. And in your book, you talk about symptoms spiral and you just, you just think of the worst case scenario of what will happen. Do I need to start planning for this, et cetera, et cetera? And it's so important to be able to. have the language to label something and say, this is what I'm feeling, this is what's happening to me. And so that you can recognise when that's happening and short circuit that process because it's so exhausting otherwise. speaker-0 (20:28.726) Yeah, it's so exhausting, isn't it? It's such a load and so added to by that sense of, it is all on me. So if nobody else is looking out for me, I have to think about all of these things. I have to figure it out. And that in itself is a physiological stressor as well, because when can your brain ever switch off? It has to be, it has to be those things out. Cap, what do you do to kind of explain to colleagues, I suppose, the more holistic element of the... patient consultation or what have, you know, when you do training and things like that. speaker-2 (21:00.75) I try to impart to them how devastating the disease can be so that they can recognise the psychological aspects. And I will sometimes use patient examples. I've had a couple of patients who have shared with me that when they've been on their diagnostic journey, and in the diagnostic journey for this, for most patients, they're getting repeated UTIs, they're going in to see their GP repeatedly. Hopefully, eventually, the GP will trigger a referral into the hospital system, the secondary care system for investigations. But unfortunately, there is this tick box culture where they're taken in and the patient's full of hope at this point and they go in and they're having their investigations, which might involve scanning, might involve a camera into the bladder, cystoscopy, might involve something called Eurodynamics, you know, to see whether the bladder's emptying efficiently. And if it's infected, it's not probably going to empty very efficiently because it might be swollen. And then the investigations are all complete and the patient goes for the results for their next appointment or they get a telephone follow-up as we do quite often post pandemic, the specialists do, we don't in general practice anymore, but they do. And the patient's full of hope because they're thinking, right, I've had the investigations, I'm now going to be told what's wrong and I'm going to be given the treatment and it's going to cure me. But actually what the specialist investigations have been looking for is they've been looking for cancers. and they've been looking for maybe anatomical abnormalities that can be corrected by surgery or something like that. And so the specialist is going in, the urologist is going in saying, good news. And the patient's like, really? Yeah, there's nothing wrong with you. And the patient's, but there is because I feel like I've got a firework in my belly and I'm peeing 20 to 30 times a day. the specialist says, yes, but it's not cancer. And I've had a few patients tell me that they've turned around and said, I wish it was because my uncle's got bladder cancer. And one, he said it doesn't hurt. It got picked up just on a routine test. And two, he's had it treated and he's fine now. And you're telling me there's nothing wrong with me. So what's to become of me? And so sometimes they're lucky enough to be given a treatment that works, but sometimes they're not very lucky and they actually don't get something that works very well. speaker-1 (23:25.368) And when I was going through that really resonated with me because when I was trying to get my diagnosis for my lung condition, it was such a relief to finally get the diagnosis and you know, it makes a big impact. Even after all Eureka moment. You can just, at least you know what it is and you can move forward. speaker-0 (23:44.706) that uncertainty of not knowing. We were talking about this on another episode when I was sharing exactly like you're saying Cat, the impact of not knowing, going for these tests, patient has all this hope and then they're told tests are negative, there's nothing wrong and the disappointment, the sadness, the frustration, the fear and this leading consultant was like, but are they not happy that it's not cancer? I I'd an adequate job of explaining why they weren't, but there was just this disconnect of, why wouldn't you be happy about that? What do you think it is? Maybe this is a hard question, but why is there such a disconnect between being able to see why that's not a happy answer for a lot of dogs? speaker-2 (24:32.678) I'm not sure, but I'm going to, if I can, I'll tell you about an anecdote. I was, we were talking previously, weren't we? And I was saying how impactful it was when I was a third year student and I did my urology placement. And even though I knew that I'd never be a surgeon because my special perception is not that great and I might've ended up cutting the wrong thing. It really made a huge impression on me. And one of the reasons was because the consultant who was my... consultant on what we call a firm, you you're attached to, was just such an incredible guy. And one of the patients he told us about, we didn't meet the patient, but he told us about it. And he didn't tell us about it to teach us necessarily about urology, but he talked about it to teach us about patients and about human nature and psychology. And he told us a story about a patient he had dealt with who had symptoms. where he ended up with tubes being put into the area that his kidneys drain into before it goes to the bladder. because he had been going to his doctor with symptoms of pain and problems and not being very well repeatedly and his doctor had been running tests and telling him there was nothing wrong, there was nothing wrong, there was nothing wrong. And he'd actually been going for months and he felt disenfranchised. felt not believed. He felt like people were accusing him of making things up and his wife believed him and he felt like the whole medical system was against him. And he ended up in the end not being able to pee very well. And at last he got through to this lovely urologist who said, my goodness, the pee isn't leaving from your kidneys and entering your bladder very well because the tubes in between the ureters are seemingly blocked. And so I'm going to put tubes in to drain it right from the top where your kidneys collect at the top. And we give you a little bag. So that was fine. So he was then draining and his kidneys were recovering a little bit, but we've got to investigate why your tubes are blocked. And then they discovered that he had pancreatic cancer. And it was his pancreatic cancer that had caused an inflammatory problem, which had sort of slipped down to the area that speaker-2 (26:54.316) behind the pancreas, lower than the pancreas are the kidneys and the ureters, and I blocked the tubes. And the man said, thank you so much. And the urologist said, I've just told you, you've got an incurable cancer. He said, I know the reason. I know why, and I'm believed. And that man had nothing but relief because although he was going to be dead and he was dead within six weeks. He had been validated and the psychological impact of that validation was what he needed. And that made a huge impact on me and I think that's partly why I'm a holistic doctor, I hope. speaker-0 (27:39.84) Yeah, yeah. Gosh, that's so powerful, isn't it? So powerful. Because it just shows the impact of believing the person in front of you in either direction, you know, the potential power you've got to really help them feel safe, heard, or yeah, the opposite really. Thinking about that, I'd like to explore this from like a couple of different angles. One, healthcare professionals listening to this. What are the sorts of things, I know there are difficulties within the NHS, as you said Cat as well, it's about chunking up the sessions and things like that. But what are the things that can perhaps help them make, be a little bit more curious or give that validation? And I'd also like to explore it from the patient angle in terms of if you're not being believed or heard, how do you nurture that resilience to help you go back so that you don't just. exit the healthcare system and have the negative effects of that. So maybe we'll start there if that's okay. speaker-1 (28:40.664) Yeah, I mean, I think sometimes it cries a little practice and back and forth and you've become more confident over time. But one thing is preparing for your sessions, your appointments to get the most out of them and to almost put a case together so that your doctor can understand what's happening. Just make a list of what's happening for you, what the impact is, what you've tried, what hasn't worked. And then your maybe you have certain questions that you want to ask and get them in so you can be prepared for those sessions. And I think if they're not listening, like you said, you can ask for a second opinion, but you can also refer to Jess's role. And so it's an initiative by the NHS England to encourage doctors to review your results and your symptoms if they're not clearing after a certain amount of time. And so you can have that in your back pocket and say, Hey, listen, I have, this has been happening for X amount of time. Nothing has changed. We need to review things. It's not you saying that it's really actually the government has put that together and you're just sharing that information. So I think those are some of the most important things to use. speaker-0 (29:54.9) knowing your rights and preparing to articulate that. think one of the things that I highlight to people as well is when we prepare our notes for appointments, that's super important. But it's a different thing sometimes, isn't it, when you get into that appointment and there's just that natural power inequality that you implicitly can feel. And at that point, like physiologically, we can be muted. I give the example of I will not sing in public. So like if somebody put me in a karaoke booth and told me to sing, I physically could not do it because my body's like, that's just not safe. I'm not doing it. And it's a similar sort of process or it can be when you're with your GP or professional and the voice just goes or you've got your pages, but actually you feel like if I look at that, it's wrong or it's bad or you know, so. One of the things I suppose that can be helpful for that also is preparing it beforehand, in like saying it out loud. Have you done that sort of thing? speaker-1 (31:00.494) I would have had a conversation with my husband beforehand to say what are the things that I could say or what are the questions that we both want answered. that's, I've done that. But I would also recommend having a couple of sentences on standby that you practice. So if a GP says this and you're not happy with it, this is how you'd respond. So you don't have to think in the moment. You've already got it planned out for yourself. speaker-0 (31:24.492) Yes, that your brain's familiar with having said out loud. speaker-2 (31:28.078) I agree and I love patients with it written down. It's great if it can be bullet pointed, if it can be clear. I know it helps organize my patient and it helps organize me. The biggest time pressure for a GP or practice nurse, I've gone and said it there, the biggest pressure on them is time. They've got a clock running and if you're a GP like me, you're running late already. You might have a case that you're going to have to refer in. as an emergency to the hospital and that's gonna suck up half an hour. So you're running even later. So you do have to go with speed and you've just got to be organized and having a list. And it's even worse if you've got a patient who's very anxious and you feel for them and you're having to try and make them feel at ease. So sometimes when I have a patient come in and they've written it down and I can see that they're anxious and they're emotional, it's quite difficult for them to try and explain. how they feel and they may be feeling very ill. I will say to them, brilliant, you've written a list. I love your list. Is it all right if we read it together? speaker-1 (32:34.094) That is so simple, just to have like a positive reinforcement and say, hey, well done. Oh yeah, that's a great idea. Thank you for taking the time to do that. It's really been helpful. really, it doesn't cost too much, does it? speaker-2 (32:46.658) So absolutely, and I would say to the patients as well, if you smile and you're polite when you challenge things, it's very difficult. I my patients are all lovely. I don't have a problem. But it's very difficult for a GP to be negative and put people down and disbelieve if you smile and you're friendly with it. And it is perfectly OK when the doctor says, well, there's no evidence of infection to say. No evidence of infection is the same though as evidence of no infection, is it? And can I just share with you the laboratory report? When it says no significant growth, does that mean there's no growth at all? Because from what I've read, that means there could be growth, but actually it's just not reaching the threshold. And it's probably the threshold of the CAS criterion, which is based on a rather poor study on 88 pregnant women with kidney infections in 1957. which was repeated by Stammertal in 1980-81 and it's shown to be actually quite irrelevant for people with recurrent UTI. And a call to improve things, unfortunately, was ignored right across the rest of Western world. And we don't know why, but maybe it was cost economics. But hey-ho, we need to improve things for this cohort. speaker-0 (34:06.188) I think we need to clip that and just play it for people. We'll put that as a resource if you can play that over and over again. speaker-1 (34:14.857) all fails you can take someone with you. They can come and help defend you as well. But you've already got it. You've probably defended yourself so many times, asked for things so many times in different areas of your life. Remember that and just apply it to this as well. speaker-0 (34:31.084) Yeah, and it's interesting as well, Cap, what you were saying there about it's hard to get a bad reaction when you're smiling. I know it can be hard to muster a smile when you're feeling so defeated, but I think I would add to that or extend that as if you can practice staying calm and regulated in that communication, that actually feels very empowering and that will... help you in the subsequent appointments that are challenging because it is hard for somebody to deny you something or to continue being fractious or unpleasant if you're maintaining that level of calm. And that is kind of easier to access, I think, even when you're depleted and ill because you've got nothing left. it's a level and a frequency maybe that's easier to access. And to give a bit of an example, I went to an appointment and right off the bat, This was recently-ish. The doctor issued me into the consultant room from the waiting room, which was a bit of a way down the corridor, ran off before I'd even got around the corner, was barely waiting for me at the door, got in. What are you here for? This is secondary care. I was like, has my doctor not put it on the notes? I don't have any notes. just have, I can't remember what they said anyway, just have whatever. And it was that level of... irritation, frustration, they were obviously running late. And I was so depleted with health issues and what have you that I was just like, couldn't even get frustrated, which served me in this instance. And I was like, I'm confused because I'm here for support from you. And I thought my GP would have sent you all of the relevant information. All I've got here is a separate system. All I've got here is this, that and the other, and it just says this. And I was like, okay. Well, and then I started to explain what had happened. And then, you know, there was some interruptions, but as I just kept on at that kind of tone, she started to calm down. And at some point her tone changed and then she started participating a little bit more collaborating. And I think it's very hard, especially it does make you angry. It does make you frustrated or sad or scared, you know, whatever the difficult emotions. But if you can train yourself to maintain a level, do. speaker-0 (36:49.843) you could treat it as an experiment to see what... speaker-2 (36:52.59) That's so interesting hearing that. And as you were saying that, I'm seeing a doctor who's got her problems and she was putting her problems on you. And I can see, and I sympathize that her software system's probably gone down and she's probably got wholly frustrated that the, you know, the patient she'd seen before you, exactly the same thing's happened, that she should have the GP letters uploaded so she has got. a summary of what she's gonna see ahead of her, but obviously something's happened and it's not come through. And she's the one that's up cold face and has to deal with it all. And all her frustrations with the system have come out on you. speaker-0 (37:37.08) Yeah. speaker-1 (37:38.328) But we can't absorb that as patients, Because we're struggling ourselves to keep up. We try and access a service to help us and now the system is down and we have to then make sure you're okay. It's a funny cycle, isn't it? speaker-2 (37:52.586) It is. it's hard. And speaking as a GP, mean, this week, yeah. I mean, you go in and you've got 11 hours straight, not a weaver of a break. It's difficult, to be honest, in 11 hours to find the time to go for a pee once. You bring your food with you, you've got it in the drawer next to you, because if you're office space like I am, you actually grab a bite of your sandwich in between patients as you're writing up notes and it's just... bang, bang, bang, bang, bang, bang, bang. You just, you're rushing constantly to actually get through the workload, which is where it's so much easier if you're in the private sector. it's very difficult, but you've got to, got to, got to think about your patient in front of you. You know, they have probably been preparing for this consultation with you and they've just got 10 minutes and they've got to get over some important information and you've got to get out of them what you need to try and help them. And so it's so important that you've got to actually put any of your issues, running late, software playing up, printer not working to one side, and give them the time that they deserve. But from advising the patient point of view, bear in mind that 90 % of diagnosis is made on history, so on the story that's coming over. And examination and investigations only adds another 10%. So it's so important. And GPs have to cover so much stuff. Everything that can happen to a person can come into them. So many areas. And there are guidelines around all of it. The NICE guidelines in the UK cover all of it. And there's constant updates coming out on NICE guidelines. And to try and keep abreast of it when you're working these 11 hour days outside of those hours is really, really hard. And also, urinary tract infections, it's not sexy medicine, is it? No. Hearts and cancer is a sexy medicine. UTIs is embarrassing medicine. know, peeing yourself and burning when you pee and having to go to the toilet all the time isn't something that people want to shout about. And so, and unfortunately, it's also seen as a more minor problem by healthcare professionals. They think of UTIs in terms of acute UTI rather than recurrent and chronic. So it gets sidelined. speaker-2 (40:14.656) And my experience when I'm teaching GPs and practice nurses is most of them haven't even read the NICE guidelines. Now we last updated the NICE guidelines. I was actually on the NICE panel that did this. And it was published on the 12th of December, 2024. Yet everybody, including the very doctors and nurses that I work with in my clinic, quite often haven't even read the update that their colleague that they work with was involved. in putting together and publishing. And I find that kind of disappointing because if you read that guideline, it will tell you that you should base giving treatment on what your patient says to you and their symptoms. And it has within those guidelines that if a patient has experienced a UTI in the past, you can rely on them that they know when it's happening again and you don't have to use the dipstick and the culture. You can go ahead and treat them. And also I will say to the patient, If you know you don't respond to three days of antibiotics, ask for longer. Because although it's a guideline, the clue is in the name, it's a guide, it's not a rule. And they can choose to give you a longer course of antibiotics. And they can choose to give you a seven-day course if that is what you respond to. And some people with persistently recurrent UTI need even longer than that. And you can ask. You won't necessarily get, but you might do. speaker-0 (41:42.296) Yeah. speaker-1 (41:43.246) think there's this image or view that UTIs is just something that women get. So that's why it's embarrassing and it's just something that women get. And that's why also partly why it might be minimised. speaker-2 (41:55.34) Yes, absolutely, absolutely. do think there is a degree of that. I do think there is an expectation amongst everybody, the public and healthcare. Women are the creaky gates. They do suffer with quite a lot of stuff and almost they are expected to suffer with quite a lot of stuff. I hate to have to say it, there is misogyny in medicine as in the rest of society. speaker-0 (42:21.046) And you also make in that point of the conflation of acute UTI and chronic UTI. Acute UTI, if it's just something that's going to clear up with an antibiotic within a day, you can see how it might get minimized. Whereas chronic UTI, it's not going to clear up. There's complications, symptoms, cysts, cetera. So we have talked on this podcast a bit about the difference, but you've... put together a star team of people to try and update the guidance. Can you tell us a bit about that? speaker-2 (42:51.402) Okay, so we recognised a while ago, in fact, I remember having the conversation with an esteemed colleague of mine, Asad Ali, we sat in Pizza Express in Holborn after we'd run a specialist UTI clinic that day. And we talked about how we could possibly improve things for the patients and how actually we need a proper medical definition for chronic UTI that actually We have a definition for recurrent UTI, which is mainly used as three episodes within 12 months, but can be two episodes within six months. But most people go for three episodes within 12 months because the other one could just be a relapse of the same infection. And so we've got a short sentence that defines it. But actually, I've got to say that even with recurrent UTI, I see so many patients who've been seen by colleagues. and they have actually been diagnosed acute UTI, acute UTI, acute UTI, over and over and over. And I look, I'm like, you've had six episodes within 12 months, you should have been diagnosed with a current UTI six months ago. And it hasn't been done because people aren't looking at the past history, they're not joining the dots, which needs to be joined. But actually in terms of what we can do better for this worst of the worst cohort, this persistently recurrent or chronic, no gaps in between episodes patients, is we need an encompassing medical definition that can delineate this cohort of patients so they can be flagged up and be directed towards better testing, more detailed testing and different treatment plans in a similar way to the fact that if a man has a set of symptoms, we can say, that sounds like it's chronic prostatitis rather than a urine attract infection. And straight away, bing, as soon as that diagnosis is on that patient, look across what are the antibiotic guidelines? six weeks of these antibiotics. And I do know of colleagues that will deliberately diagnose a man that they know has got a UTI that has been rumbling for a little while and say, if I diagnose this as chronic prostatitis, I can get away with giving them the six weeks of antibiotics, which I know will deliver them out of this. It's probably actually. speaker-2 (45:14.956) a urine retract infection. But we can't do that and women actually only get the three days. Adult women, non-pregnant women. Whereas men will get seven days worth. speaker-0 (45:25.794) Yeah, that medical misogyny is really real, isn't it? speaker-2 (45:29.086) It's said to be based on anatomical differences and the presence of the prostate and they've got a lot more piping. But back in the day, we used to give five or seven days. And it feels like there's a lot more recurrent and chronic QTI about since the more recent guidance around three day courses. But when you look back to the data that that recommendation is based upon, you will see that that data supported the fact that five days of antibiotics gave better clearance of bacteria out of the urine. But on balance, they thought that there's an lot of women with acute UTI who are symptomatically very much improved at three days. And thinking about things like antimicrobial resistance and side effects, it would be better. But you know what? The studies, the meta-analysis was based on not high quality evidence. And if it's rubbish out of evidence, you can do a huge meta-analysis, but a meta-analysis of rubbish still ends up being rubbish. speaker-0 (46:34.062) Yes, it's true. And I do also remember, I listened to Professor Jennifer Roane talk about a lot of the studies on the impact of antibiotics in the bladder have been done on mice. Yes. And mice don't get UTIs. You have to really force them to get UTIs. And so, you know, that really, to me, was shocking and undermines a lot of things. But she was also sharing about how there seems to be quite compelling evidence that it was much better to kind of flush it out with more at the beginning to reduce the likelihood that you'll get it later. speaker-2 (47:10.988) Yeah, and also the studies that we have got that provide the data that serve us to the guidelines. They weren't real life situations. They were situations where we knew we were studying UTI and the patients had antibiotics on standby and were given very quickly. And that's not the real life situation. We know the real life situation. Patients sometimes don't actually come in until they've had the symptoms for a week or two. Patients may want to get in the same day that the peeing broken glass occurs, but they might not be able to get an appointment. Yes, there's pharmacy first scheme now, whether you can go to the pharmacy, but you know, if you don't fit the criteria, you know, if you are X, Y or Z, you might be refused your antibiotic and it might be 72 hours before you get your antibiotics, albeit three days of antibiotics. And by then it might be long enough that those bacteria got their anchors in and are going to be much more difficult to usurp. speaker-0 (48:12.6) This is such important information, isn't it, in terms of that advocacy piece. When you know what the evidence is based on, how bacteria acts, it's easier for you to stand up for yourself in the healthcare system and ask based on knowledge. I guess just to finish off, two questions, one for you each. So if someone is feeling uncertain about their next steps in their healthcare journey, you have navigated so many different, difficult... parts of the journey, what would you want them to know? What would you want them to leave this podcast episode with? speaker-1 (48:47.16) Just have hope. There is hope and know that things will improve. You just have to have that belief sometimes. You just need to find your own formula that works for you and you're not starting from a blank slate. You've talked a lot about treatment options. There's lots of lifestyle factors that can help influence and improve your outcomes and it's all about layering it together and you will get there. So that's the one thing I just want people to leave with is that there's hope. speaker-0 (49:16.142) Yeah, thank you. It's so important to have that and I love that multi-dimensionality because sometimes we're not getting somewhere in one strand but there are other things which do count. Cat, if somebody is feeling like there are limited options, what's the point? What words of wisdom would you have for them? speaker-2 (49:38.664) say that we live in an age where information is more freely available now than it ever has been before. Get into your condition, research it for yourself online, look at all the different things that can impact it. There's so many different moving parts here. Yes, hormones and getting older can impact things. As you touched upon, you can look at so many aspects of your well-being. Lifestyle, hormones, infection. Listen to your body. Don't be sidelined. If you feel that you have got an infection, you probably have an infection. Get it diagnosed. Access the tests that are going to find it and try and get the help. If at first you don't succeed, try, try again. Move healthcare professional. If need be, move practice. speaker-1 (50:31.49) Yes, I agree. speaker-0 (50:33.024) Yeah, thank you so much. Thank you both. This has been such a brilliant conversation. I wish you could chat longer. Thank you. speaker-1 (50:40.238) Thank speaker-2 (50:40.654) Thank you.