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Welcome everybody to another of our sessions with lone with nurses. This is one of our in conversation sessions, which means there's no slides. It's just gonna be me and Sarah having a bit of a chat about things. Now, before I tell you a bit more, could I ask Sarah a little bit more about herself? Um The usual stuff that that's been with us before, for anybody that's new. Then at the end of our session, you'll get the opportunity to do some feedback as well as collect a certificate for anybody who's watching goes on demand, which means it's been recorded. We're running this live and it means it's going to be recorded. Um You can also do an evaluation at the end and get your certificates. Now, for anyone who's listening to us on podcast, maybe you have a Spotify, then you're not going to get the chance to do a certificate unless you want to come and find us on medal. So that's all the background stuff that's there. Those on demand, you will not be able to see the chat function. So if we do have conversations, um if you do have questions that are coming through the chat. We will make sure we read those out. Ok. So my name is Michaela Nuttall, as I said, and I'm a cardiovascular nurse and the founder of learn with nurses. And tonight I'm joined and I say tonight because it's tonight for me, it's tonight for Sarah because we're based in the UK. And, um, Sarah, well, Sarah Brown, she is a patient advocate and a co-founder of the International S Alliance also. Now I'm not gonna tell you anything more about Sarah. So um I'm gonna invite Sarah herself to explain a bit more about um about her lived experience um of what we, what we've got going on for you tonight and then start to talk a bit more about um International Heart Spas Alliance. But er Sarah, if I can just er get you to say a little bit about yourself and maybe give us a bit of a history of how, how you got here. How do I get here? Well, thank you Michaela for inviting me and giving me this opportunity to tell my story again. And I hope that I will be able to help people understand my condition and about pain and other things. It's not just about the heart condition that I live with. And my, I will tell you about my background because I was a midwife for 30 years and then I had to retire because of uh my, my um vaso spastic angina and we talk, you will talk and hear the phrased expert by experience, somebody having a lived experience. And as a midwife, I have that because I've got three Children. And it did profoundly affect my practice when I went back. And I have done a lot of reflecting over this getting on to 11 years, I've lived with this condition that um the vulnerability of being a patient in a bed not knowing what the hell was going on being looked after by people who weren't really sure either. And we were all in the sea of not knowing and also how the cardiologists and some of the health care professionals expressed their not knowing which was to deny that I had a heart condition and Tony that I was in pain and people walked, I would ask for pain relief and people would walk away from me and things like that. So it's been quite a difficult experience and being a midwife probably made it even more difficult because I thought I'm one of the gang, I'm a professional and I was a practicing midwife and I'm articulate, I know how the rules of engagement in this, how to talk to people, how to and I was lost. And I thought, blame me if I'm lost. What's it like for other patients? So it did affect the way I thought and what's why I went into patient advocacy to help communicate with other people. I don't think anybody purposely comes to work to do harm or, or hurt their patients. It's probably through lack of knowledge or overwork or something like that. So I have to keep them benevolent and I have to look, see people and I do get that. I would have to do it because otherwise it could destroy you. And I have, I have learned the art of forgiveness if that makes sense, I've had to because that's the only way you can cope when you have a long term condition and people don't know. So my journey started is nearly 11 years ago and I have a background of Raynaud's syndrome. So, you know, I'd get cold and I did the typical, my fingers would go white and all of that sort of thing. So I had to be very, and I was really quite cold. Oh, I was no lover of the cold. And um and then, and I was very, very fit. I used to get my bicycle and I used to cycle eight miles to work. I used to and the birth center which I worked at was on the third floor and I literally ran up the stairs to the third floor. Get to come in, get my scrubs on and I go right then and that's how I was. And the bit of London that I live in when I came home, I had to cycle up the steepest Tiger hill around there is the steepest hill in London and I would do it and that's what I did. So, it was a bit of a shock one. Very, very, very cold. It was very, very cold and I can, I know where it is exactly where it is in Hampstead where I was going up the hill, cold weather. My hands were hurting because of my runny nose and I started getting chest pain and I went, oh, what's that? What did I do? I ignored it. Yes. Well, a lot of women do. A lot of people do, but particularly a lot of women do. Um, unfortunately with chest pains. Yeah, because I was low risk. I knew I was low risk. There was no reason why at that, you know, I was in my late forties, um, late fifties that I could possibly, I thought I could possibly have angina. I can't, you know, this is just, you know, it's just, and it kept happening and, um, my husband has angina but he's got obstructive disease and he ended up having angina and I had to get in there and he had his stent in and all this sort of thing. And he looked at me and he just said, you've got angina and I went, no, I can't have angina but he said, yes, you have. So I went to the doctor and she did actually take it seriously and she said I've just called the ambulance. I went. You what? Here's your GT and you're off to the hospital. So I orthoped off to hospital, they put me on to do a stress test and as I stood there it was cold. They wouldn't let me do the stress test because I got abnormalities on my, I got ECG changes. So there's a, and sent me off for my angiogram and of course, what did my angiogram show? Yeah. Yeah. Did you get normal coronary arteries? I bet you got that. But while I was having my angiogram, I kept telling them I've got chest pain and the person doing it looked at me and said you cannot have chest pain. Your coronary arteries are clear. So it was a missed opportunity and I've probably had ECG changes but they ignored them because my coronary arteries were clear. So they ignored my symptoms. So I got sent home on, they sort of scratched their heads a bit and went well, you know, you probably a bit anxious. Have these beta blockers. Now, beta blockers are, there's a story behind beta blockers how they can be very helpful if you've got microvascular angina. Um but not for vaso spastic angina. So um I came back in and that was a blue light trip. I scared the hell out of my family because I just had enormous episodes of chest pain. And I think I have to describe you that when I have a really, really bad spasm, it feels like being in labor. Wow. And that's because it's a, it's a spasm. It's a, your arteries going into spasm and they'll go into spasm and then they'll relax a bit. So the pain doesn't go completely. And then there's a little bit more of a twist, relax a bit, a little bit more of a twist, relax a bit. And they do this over time and that process of crescendo pain can take an hour and then it stops and then I'll have a rest for an hour or so and it'll kick off again and I can have these in a 34 sessions of really bad pain like that. Um So my husband just looked at me and they just dialed 999 into hospital and my husband's eyes was big as sources because they, I just went in and they just did stuff to me. Somebody just, they gave me morphine without, without my permission. They just gave me morphine. They did an arterial stab without telling me which is so painful. My ts were abnormal and they thought I was having a heart attack. So everybody and, and then of course, then somebody, um so I got it was a Sunday night. So I got sent to the cardiac ward and I was still having these episodic crece episodes of chest pain. And I met somebody, the junior doctor who came, who was covering, looked at me and said, you're in a lot of pain. He said, I think you've got unstable Angina. Let me give you IV GTM the infusion of, of GTN and that was actually a very good guess because he came that started and my chest pain stopped. So that's another classic sign of bass spastic angina, the cold, the emotional, the emotional my other triggers, emotional and mental um exertion. And at the time of that big episode and of course, beta blockers are counter indicated because they make spasms worse. Didn't know at the time I do now. Um And it's written all over my notes. Don't give me beta blockers. My emotional stress was that it was the anniversary of my father's death. So a big trigger there too trigger there. I'd had my three Children were teenagers at the time and um I remember one being a teenager and kicking off. So that was, you can see, I now know, but together and classically IGTN if you respond to it is another sign that was fine. I had no chest pain. I was feeling happy. I was half asleep and somebody walked into my room. I didn't know they were doing this and they just turned off my IVGTN and then stood at the end of my bed and said Mrs Brown, you cannot possibly have cardiac chest pain. Your coronary arteries are clear. And then he watched me have the enormous episodes of chest pain. Wow, it just, and I have this, this I have a really bad rebound pain in fact, my rebound pain could be worse than my, I'm having memories of my epidural wearing off. But it's like the epidural wearing off and the pain came back and my heart rate went through the roof. Um, my blood, you know, everything went good. You must have looked awful as well and I looked awful and I remember just getting going on the bed on all fours. Yeah, because I was in so much pain and he just looked at me and he ran out of the room. He didn't turn it back on then. Oh, no. The, my husband went out and found a nurse who came in, turned it back on. I think she, I think she gave this doctor a little word in his ear and then he came back with the consultant and the consultant actually was the person who looked after my husband who picked up my husband's angina. So that, that felt quite reassuring. And he had looked, my ECG came back and he sat in my bed and he looked at me and he went, I think you've got coronary vascular dysfunction, which I think wasn't quite right. But it was a good guess. Um, because this is, you know, 11 years ago and he wasn't an interventional cardiologist who was actually a heart failure specialist. Um, but he's pretty savvy and he, he guessed right. So, problem was, he gave sort of, it was a presumed diagnosis, but of course, none of his colleagues agreed. So I would come in and they would sometimes start my IV GTN and I'd say you need to write up a big supply because I'll go up to 10 and things like that. No, you don't need that amount of GTN. No, you don't need morphine. And people would turn my morphine off. They would not give me morphine and, and I can imagine of somebody just turning the back on me, a nurse and just walking away from me saying you don't look as though you're in pain. Yeah. And that's a one you don't look because you know, that is a, a horrific statement to say to somebody in pain. Um So that, that, that was wounding as well. Um And then there would be breaks in my IVGT and they wouldn't change the syringes in time. So that took me back in and it, it, it just did like it just took me longer. So eventually, um and in the end, you know, I've been I/O and in the end it realized I had to retire because they said, look, you cannot continue with the midwife. And I knew that. So I took ill health retirement. And that was quite interesting because when I got it, I got the higher tier permanent incapacity. And my manager, I mean, they were, they were not that great. They weren't supportive. I'm sorry, but they, they tried and they pushed me into a situation of practice to try and get me out the door. Basically because once your midwife can be broken, I couldn't work on labor ward anymore. I couldn't work in, I couldn't be a midwife as far as I'm concerned anymore. And it was, the stress was getting to me. Um, so in came the, they said, my manager said, oh, you've got tier two permanent incapacity. How did you get lectured? This heart condition of yours must be quite serious then? Mustn't it? And I went, yes, funny that, oh, occupational health has recognized it. And I applied for my personal independence payment and I got it without, and so many people have so much hassle because that's a challenge for anybody. My daughter has personal payment and that is a challenge. I got that. And when I reapplied for the reassessment, I got it indefinitely enhanced for both. So the government recognize this is really funny. D I department and work and pension recognizes it. Occupational health, recognized it. But I go into hospital but the cardiologist recognize it. Or the cardiac nurses. No. And is that partly because we just don't know enough about it? So, if I have something, my daughter has cardia syndrome of which in, I ignore, but she ignores our own chest pain. Now, you know, you learn to live with it because it's, it's, it's, it's, it's just one of those, it's another pain that's there. But, um, but most people, well, it's a lot better now since, since COVID, because a lot of people are getting pots as part of COVID. But, um but yeah, that, that recognition and, and that classic bit of what you were saying, but you don't look in pain. I had a healthcare professional and change what the, the pain team came round to see her and she manages her own pain brilliantly, you know, absolutely brilliantly. Um But she just POSTOP, she just needs an extra day or two of morphine or extra day or two, which is absolutely fine after that. Um And she said that this, this, this, I won't name anybody but um said, oh, no, no, you don't need that. You don't need that. We'll give you codeine. Well, she can't take codeine. It was just really bad. So anyway, I'm jumping in. But um so tell me more about, tell me more about the, the, the, the how the patient advocacy side. There's one little final bit I will say, which is that? Um I thought, well, right. OK. And I looked on the BHF website and there wasn't very much information and then I found myself a cardiologist who knew about the condition and I had a very specialized angiogram. Makes a big difference. Yeah. And I got my definitive as my cardiologist says, now, objective diagnosis, it's written in black and white that I've got when they did it, I had spontaneous and, and uh the induced um ST elevations, depressions, lots of chest pain. They gave me morphine and they said, yes, you and, and I am badly affected. Um, so yes, I've learned to live with a lot of pain. I go in when it just gets too much. Yeah. So my advocacy approached the BHF and at the time they had written about cardiac syndrome X, which was the old term that was used to describe chest pain, ongoing chest pain with clear coronary arteries. I remember that they would send women out with it. Oh, it's syndrome X. You got um you've got an abnormal pain perception. You've got a sensitive heart. Uh It's not ischemia, you know, it's not going to kill you. It's benign. And I was thinking, oh, no, you know, this pain that I have, that's not in my head. It's like, you know, I didn't imagine my labors. I'm certainly not imagining it. So, um yes, getting the diagnosis was important. So I approached the BHF and I applied and I became, they introduced um lay members to the clinical studies committee and I was one of the first lay members. So that was in 1916. And I said, oh, can you update some of the information on the website? Oh, right, Sarah. So there's some more information about microvascular angina. And then I said, can you do some for vaso spastic angina too, please. So that's on there. And I was involved with that. And then the terminology. Um, there's too many names for the same. Then they can't make their minds up. So you'll hear non obstructive coronary artery disease, you'll hear ischemia or angina, non obstructive coronary arteries, Inoa and oca microvascular dysfunction, coronary, microvascular dysfunction, premen angina, vasospasm, angina or coronary artery spasms. You know, and you know what? They all hurt. That will be the big, what you call it. They all hurt. That's the, but the people with microvascular angina, the treatment options are slightly different because it's a different process going on. Yeah, it's a small vessel's inability to dilate or stay dilated when you exercise, I can exercise, but I will get hit by chest pain later. So I did my stress test and I warned them, I said, and when I had my cardiac MRI after the adenosine went in, I said, give it about 5, 10 minutes and then my chest pain will kick in and they did exactly that. So my mind just go into spasm, they just don't behave properly. So, and again, people not understanding that if my IV GTN was a break, just how painful it was for me and it's still painful for me. And that has resulted I have a formal diagnosis of post traumatic stress disorder because because of the inappropriate management of my pain and my condition and you know, and, and as a healthcare professional, you like to think that actually when you're because it makes us reflect back to when to, when we've been with people with pain or going to be with people with pain and just how important pain is and how, actually, maybe sometimes we don't think about pain as much as what we should do. We think about all the other practical things that we can see and do and measure and things like that, but when it comes to pain, um, and that, but you don't look like you're in pain, you look like you're fine. It's a real big challenge. I think that comes through. Um And so you'll get your GTN now, is it, it's much better, it's much more better because what I, what I, once I got my care plan, um, I, then they decided that I was a bit of a too hot potato for my specialist. I mean, he, he went so far and then, you know, he was just pull his hair out and I got referred to my, you know, the tertiary as somebody who's a world leading expert. And then, but he, he, he's sort of in the periphery now. And then I have a fantastic cardiologist who's an interventional cardiologist at the hospital I'm at. And, um, so I have three sections to my care plan. I have the painting now, I'm very unusual. I have a patient controlled analgesia of morphine. Yes. Yes. Yes. And I've had to fight very hard for that. The painting back me up. Um, and then because someone went, when there was a change over, there was a new ward manager and she got very said, oh, no, you can't have that. I, I went, it's been agreed by the form of Atri. No, you're not taking it. And I just had a, I, I just almost had a, a breakdown when she, she, she was about to tell me I couldn't have my morphine. Yeah, because my PT and her lack of appreciation of is part of the process to help me manage my pain. The only time I have morphine in the hospital and then the GT N they know now that they have to change it very quickly, they pre prepare the syringe. So there's a whole section. So there's the pain management side. So it's written down if um before the PCA arrives, they can give me morphine every two hours and I do need it. And then um then the cardiology bit which my cardiologist has written the instructions about my ECG S and my troponins and big letters. You know, if there's any break, it will cause me a lot of pain because the rebound vasospasm, there's a nursing bit. I wrote it actually. But, and then there's that and then I, they, I had to wait to see this person because of COVID and things like that. I had a diagnosis of post traumatic stress disorder, but no treatment because nobody could treat me because all the psychologists were busy with the staff, which is understandable because of what they are going through. So I saw her and we did a section about understanding Sarah's base spastic Angina and PTSD and how that interlinked and about my pain. And the first line and literally the first line I say is that uh my pain belongs to me. If I say I'm in pain is mine. I may not look as and I say when I'm in a lot of pain, I'm actually very, very quiet. I go completely quiet and in, in on myself. So you will not recognize that I'm in pain. So it's, and I, and I showed him, I also got a visual of trying to express pain. And again, them, again, getting them to realize if there is a break because it does happen, they get busy that they must sort of scoot me up afterwards and it did happen last time I was in um but they were very, they won. They apologized to me and they scooped me up and they gave, made me me a cup of tea and they were, they just gave me the gentleness, the care that I needed because in the past, they did just walked off and left me so that there's that appreciation. Um And my cardiologist comment when he saw it, he said, I, he said, and he does listen and that is the most amazing thing about him. He said, um I understand what you're trying to communicate, which is that your pain belongs to you. And he said that hadn't really got through to the staff. Yeah. Wow. And that's something I think, and that's where I want people because we're going to be opening this up to any comments or questions or thoughts, particularly around pain. And I'm not asking everybody to sort of start thinking about all the times when we may have not been as kind as we can do. But it takes those experiences, I think that we experience. But like you said, for being in labor made you realize what it was like. I mean, I just have, I have those memories of that, of, of my epidural running out and it's been horrific. I mean, I've just lost all control. I was a particularly horrible person. Um, I mean, really hor, um, but then I see it with my daughter who often she lives with chronic pain all the time with, between that and the s and, and, and most, you know, most of the time she doesn't take any pain relief, chronic pain. That's it. That's all she does. But it's only when she gets to a point that's when it's bad. And I'm loving that. I'm loving that thought of my pain as mine. You know, that, that, that's a great thing. And it's how do we then help and how do we get others, particularly, as you say, you know, no one goes into this world to being a healthcare professional to, to be horrible. Um Your situations may make you not respond in the way that you they want to respond. Say, but I wonder how we can get healthcare professionals to be more, be more accepting of that. And I take these experiences and that we all have to have it to have it. So um so, so the last sort of five minutes before we have that and we already got saying, I remember that from Aio too. That was the syndrome X I was having those and Ingrid's just written it and very powerful presentation. It is it really and, and it's really made me think about, I was talking to somebody the other day who was, who was gonna say we're gonna have more um um particularly from health care professional with lived experience or, or, or, or what, you know, just to get in this space for us to talk about it. So tell me more about international heart spasms. And so, you know, my reflection was that, you know, I can talk the talk, I understand the research. II, I can look at a cardiologist in the eye. I've learned to do it and be very politely. I mean, somebody tried to turn my IVGTN off said you tried to tell me I didn't need it. And I looked him in the eye and said last because you've done it before. I said the last time you made that decision. I ended up in a, a lot of pain, severe amount of pain. I just looked at him and he just looked back at me and I kept looking and I said it again. I said it three times to him and then he looked at me and then, right, OK. I'll go and talk to your tertiary um pro because he was trying to tell me this is a couple of years ago that I got cardiac syndrome. X and I said that's not my diagnosis. I need this IVGTN. Um So he poodles off, goes and talks to my tertiary and then he comes back a couple of days later and I look in the eye and I said, what's my diagnosis? Then he went, those are supposed to come China and I said, right, fine. And then this is the thing he said to me, you've got my absolute sympathy about what you live with. I thought my God, what did that other cardiologist say to him? And the part of me sort of said, but it shouldn't be that he has to go off to a pro as a specialist to tell him that actually Sarah's pain really is real. She's got it really, you know, she's extreme presentation. She's the unlock, you know, the in form. It should be that somebody should look at you and realize that you're in pain. And my, my cardiologist now has seen me twice and he says I go completely white. He knows when I'm having a big doo. He doesn't, he doesn't need to ask me. He knows. So, why doesn't everybody else see that? My husband knows. Um, so yes, I deal with the pain. Most of the time I use a Tens machine like we do in labor, hot water bottles, um, breathing in and relaxation, put the music on and I will go in when I've just had enough and I run out of resilience and coping mechanism and I just need a break from the pain. So that's, and when it, when it escalates. So, as well as approaching the BHF uh I don't know how because I'm also part of the cardiovascular care partnership. And I, somebody said, so would you apply to the Royal College of Physicians, these special speciality Advisory Cardiology Committee? They redoing the curriculum. They need a patience, you understand all this stuff. You're a midwife, you understand the lingo. So I went, it was pretty tough actually. So, guess what's now in the curriculum? Yes, it is now in the curriculum for training of cardiologists. So, um Coronary vass spastic angina, coronary, vasospasm and microvascular dysfunction is in there. And being a midwife, I also popped in about, please safeguard the breastfeeding relationship about just giving them the pills and forgetting that, you know, if you've had a spontaneous coronary artery dissection, which are now treating conservatively. But I saw lots of people just had to give up breastfeeding because they were given inappropriate medication. Um So that's in there too. So I'm very proud of that. I'll die a happy woman because I've achieved that. But for me, we, I, I, I wanted to be able to put in one place in accessible language that um patients and clinicians and carers could read and understand in plain English, which is what I saw at the BHF. And so I joined up, I knew I could do it by myself. I'm not well enough. I, you know, I just, I need, we need, we have to time today, didn't we ready? Because we knew that winter's hot. Yeah, but that, sorry to jump in. But yeah, we just conditions you have to plan when things are going to happen. Yeah. Yeah. Um So, so there's Cindy who's based in Australia and then there's Terry and um Annette and they're in America. So we've joined up and we scooter around and we were supported by 30 cardiologists all over the place. So we worked with uh Roxanna Moran who and BJK, you know, the women and how it affects and the position of women, heart patients, which does, I think also have an influence on why we don't necessarily get care or we're not believed or, you know, I've been told I've had a, having a panic attack which I think is quite common for women when they do have angina or a heart attack. Um So, yeah, got involved with the uh um the Lancet Commission Women in cardiovascular Disease. So there's a little bit of me talking on the website about what Vasa spasm feels like to me. And again, it's just trying to, I don't think, how do you describe the indescribable? So, we're doing some research. I've done just done some stuff with the British Association of Cardiovascular Prevention Rehabilitation. And it was an in depth interview with 20 patients, their experience of cardiac rehab, which is usually we don't get it because we're not patients. You haven't got an a and I can put a, I'm having awful flashbacks now of awful things I must have done over years ago. But you can't, if you don't have the knowledge, how can you blame yourself? So the other. So we did and we sort of poling along and just trying to get and we were putting together some research with John who's a professor in, in um in Australia. So we're working at things and again, it's about communication. I think for me, the next part is getting the care. I mean, I have my care plan, everybody with this condition who's I/O needs their care plan because we are individuals and we almost have our own individual expression of the disease that most people with chronic conditions need a care because because it's also individual, it's exactly that, you know, this is, I would really advocate that and, and most of the care plans that we can get, you know, the ones, the patient passport are geared towards maybe learning disabilities or, or different issues. But I use that I adapt it but when my daughter has to go and so I take that with you, you know, you'll be fine. But I am one of those in my care plan. I carry a hard copy but it's actually on the electronic record system of the hospital. Wow. Wow. Yeah, I fought very hard for this. So when I go in, I don't get, I don't get messed about the way I used to. It's, and now I was in last time, they got very excited and they brought the medical students came and talked to me and I wasn't allowed to tell them what was wrong with me and they talked through and they went through or asked about my and their symptoms and I described everything and then one of them looked at me, if you got spasms, it sounds like spasms. And I went, yes. And, and I said to when the um the lecturer came, I said, I said, it's very interesting. I said, these innocent who haven't been corrupted almost by the system by the results. They were treating me and my symptoms and guess what was wrong with me? As, as he said, rather than looking at the numbers, seeing clear coronary arteries, you can't possibly have angina or heart attack. So it's going back to that basic listening to your patients with open ears and open hearts, no assumptions, no prejudice. Um And I talked to you about the initiative at the hospital. I work is about what matters to you initiative where they want to try and change the conversation. So that at the start of the shift, the nurse would come to you and say what matters to you. So I will say please read up follow my care plan. So it's a, it's a different way of thinking and it also allows that equal respect for the caregiver and the person you're caring for. I actually have written in my care plan that I'm an expert by experience and please, you know, they to follow me, follow me. But in a way, I think it shouldn't have to be written down. That's what good nursing is. I know. I know, but if I'm just having flashbacks now, we've got about five minutes left. So, and I just want to look at some of the stuff that's in the chat, but it's reminding me a bit and we did a session with Dawn and then conversation session with Dawn who's a parish nurse. And she talked about being kind and doing nice things and just little, you know, just these little things. It's not about amazing big stuff is it, it's that and I think there is a chance particularly more than ever. But, you know, um, well, we have people from all who access this, from all over. But, you know, being a healthcare professional, the moment is probably as tough as it's ever been. And it is just, and we know, I mean, I just saw something the other day saying that they really trying to take their own lives more than they've ever done now. So there is that it's really hard, isn't it to get that balance of somehow that we know that? Yeah. So let's talk about maybe on the, let's round it up with some, some update stuff maybe. And I think that I will also say is, did you ever get, you're very interesting because that I always think is a bit of a, are you very interesting? Which is not be very interesting? Oh, just let me be ordinary and you can, I get one time I was in, um, and they, the cardiology reg turns up pretty promptly. I don't have to go through all the. And, um, he turned up and, um, and he said to me, he said, oh, you might not recognize me. But I saw you last time and he went and I had a chat with your pro. He says, oh, you're so complex. He said you. So, and then the other time was that somebody came and said, oh, golly, you're so interested. He says, I'm going to be an interventional cardiologist and I really want to know how to do the testing now. So, I, I can diagnose other patients like you, which I thought was actually quite good. But I thought, you know, but, but that's a change before it was, it's in your head. You're not a proper cardiac, you're not a heart patient. I mean, I was told that I had a pain problem. Not a heart problem. No, you don't need all those drugs. And now it's, I hear actually you're a group of patients that we haven't cared for. Well, I think there is a big interest but my concern is as the cardiologists run away with it, they'll forget that they need to ask us the patients how, how the future of the care should be planned and the guidelines because we live it. I live this seven days, you know, the whole thing. But also as a former health care professional who's put together my care package that I want to share that experience to, I want to smooth the pathway of the people behind me. I don't want anybody to go through my experience again. And I think that's what motivates the International Heart Spasms Alliance. And I'll tell you why we're heart spasms because that is the word that people use to describe whether they've got microvascular angina or vaso spastic angina. They'll say I'm having heart spasm. Yeah, they're not going to say I've got an ochre or AA, you're right. It, it will change. I've got spasm in my heart and that is our word and we want to take ownership of our condition rather than having somebody from outside naming it. So I'm just gonna read out some of the comments that are here and then I'll think we'll just wrap up and I'm gonna get you to maybe think about. So, whilst I'm talking through these, just think about a couple of key messages that people can take away. Although I think I know what you might be going to say for those couple of key messages. Sarah, I'm listening for people who are on demand or listening on the podcast. Then you won't be able to see. So I'm gonna read it out to you because they've had some really great comment. So Sarah said, not you, Sarah. Sarah, why has said about Sarah Brown? Thank you Sarah for sharing your experiences. I work in Gastro and I think there are many conditions across understood misdiagnosed and mismanaged leading to patients being labeled and not believe like you trauma time left in pain or with other difficult symptoms until a clinician believes in them or specializes in the condition. Um which, which is just absolutely capsulated it all that way, hasn't it? Ingrid is written and our carer was told she was having pseudo seizures. And years later down the line, she was told she had a brain tumor, um which is quite shocking. She said, I think it's not uncommon for a doctor to give a diagnosis and nurses may not always question this. And Zoe says, thank you very much, Sarah, much to reflect on and inform my future practice. And I think that's what we want, isn't it? Is for people to listen to your story and then take something away and think of how, how that is so thinking of that, take away what are your key messages there? Do you think that you would like people to think about? Um later on? Well, I think somebody has reflected it already that, um, listen to your patients and listen, I say with that open open ears and, and try no prejudices and um, people aren't going to make up their pain, their symptoms. Very few. I mean, there will be before but very, very few. And when I had my angiogram and it was demonstrated what was wrong with me, I felt validated and vindicated. And I remember saying so I'm right then it is my heart. Yes. Yeah. And that was, and, and that was so so powerful because I thought I was going mad because people kept telling me no, it's in your heads. You're having a panic attack. I was actually told by a really prominent person, cardiologist that I'd probably more, I wouldn't die from this. I'd probably more likely die from breast cancer, which is just so untrue. There's so just keep an open mind. Listen with intent and care and those small acts of kindness make the bearable, unbearable, bearable which may be, as I said, you know that I had that break. It was them, take me back to my bed. It was sitting me on my bed, the two of them, somebody making me a cup of tea, somebody just sitting with me and holding my hand and giving me a hug, my pain. I think we're in there because that's quite a, that's quite well. I just remember my old days now being on wards, but I gave lots of people hooks and I, in fact, I still do math, I think hugging the power of a hug. I know I must for COVID, but the power of a hug is, it goes a long way. So thank you, Sarah. Um Thank you. I've just had your just, just popped in the chat. Very interesting and definitely something we'll keep a note of in future practice. And I think, although we're talking about Sarah's experience now, this is not unusual what happens and we've just, you know, the other Sarah's talking about it in gastro. Um And so wherever we are, if you get people that follow a very, you know, you have called traditional path and that's what we look for. And when you deviate, when you're not part of that path and become interesting, that's when it's more challenging. So I a wrap us up. So for anybody that's already on now, I'll be sending you that feedback form. You can pop in and do that and this will be available on demand as well. You can watch this on catch up and that will come out but sort us all out. Although she's off watching, um, she's off to a concert today. So, so tonight, so it won't be for a little while. She'd love to watch Elton Johns and some very sparky boots on. So, um, which will be very good. Um, yeah, so a huge thank you, Sarah and thank you to everybody who is watching now and who will be watching er, in the future for us. So Sarah, if I can get you to stay on, I will stop the broadcasting. Um, and that what that means is we will stay chatting but everyone will go. So bye everyone.