Cases that changed me - managing mystery diagnoses (23 June 2025)

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Hello everyone and welcome to another episode of Clinical Conversations brought to you by the Royal College of Physicians of Edinburgh, Cheney and Members Committee. This episode is part of our mini-series called Cases That Changed Me. I am Dr. Marilena Gianudi and I am on the Training Members Committee. And today I'm delighted to be joined by Professor James Deere.

Who's a professor of clinical pharmacology and a consultant at Edinburgh Royal Infirmary? So, good afternoon, prof. Thank you for joining me today. Good afternoon. Pleasure to join you. Looking forward to having an interesting chat. Retail.

So uh this mini series has been launched so that we can talk with more senior or mature members within the hospitals of cases that have changed them, so that we as more junior colleagues can learn from them and maybe see how we should adapt our So I guess I first need to start by asking, is there a particular case that has stood out to you throughout your career which has really changed the way in which you tracked it?

Yeah, there's one case that jumps out at me, Marmelena, and it partly changed practice, but I think it also highlights some of the challenges that we all face in medicine. So I think it would be a good one for us to start with anyway. So it was a case when I was first a registrar back when dinosaurs ruled the earth and I remember the case very clearly. It's one of those cases where you remember which bed the patient was in.

It's one of those cases that's kind of burnt on your consciousness. So it was a man. I'm guessing he was middle aged. And he'd come in with left arm pain and had come through to medicine because there was a question about is this myocardial infarction? Um, so he'd come into the morning for me A and E, and they'd done troponins and ECGs, et cetera, and he'd come through to the medical unit.

So we saw him on the medical unit and he was clearly in pain. His arm hurt. There was no history of trauma, but he was clearly in pain. He was also tachycardic. And didn't look well is the honest answer. His ECG was normal, his troponin was normal, it didn't really sound like it was from his heart. And there was nothing really to find on examination. His arm were examined normally, his shoulder was normal, his skin was normal. So didn't really know what was happening.

I think already before coming through to the medical unit, he'd seen the orthopaedic surgeons who have said that they didn't think this was an orthopedic problem, and he came into the medical unit. So there was a degree of uncertainty in his presentation. The next day he'd become more unwell. He was tachycardic. I remember that very clearly. I think at this point he may have had a fever and in a lot of pain in his arm. But again, nothing really to find on examination apart from fever.

And again, it was not clear what was wrong with them. Blood tests from memory, I think there was probably some aged inflammatory markers, but not much else. And it was uncomfortable because we didn't have a diagnosis. And then I remember very clearly on I think it's probably the third day, I may be slightly long on that, he ended up going to theatre and have his arm amputated because he had mecotizing fasciitis. And that

sticks in my memory for a number of reasons that it's interesting to discuss. But I think they're around uncertainty. what you do when you don't know what to do, what you do when you feel that a patient who you're looking after as a junior I'm not saying he's getting bad care. But you as a junior feel uncomfortable because you feel like there maybe should be more done, let's put it like that. And also how you identify those patients who are in the wrong place.

because he'd come through a certain stream, i.e., is this a myocardial infarction? And once that was ruled out, he was in the wrong bed to take that forward. So maybe I I'll stop there for the moment, Marlene, and maybe we can sort of unpick bits of that as we go along.

Yes, please let's should we start with dealing with what happens when you know that the patient is in the wrong bed? I think that probably is maybe the best place to start and then we can talk about uncertainty. Yeah, sure. Absolutely. So this is something that's I think probably common to everybody.

So if we leave aside that case, although it's a nice highlight of it, I do general medical receiving still. I was doing it last week. And we all know that patients come into say a medical bed who should be under a different specialty. And that I'm sure happens to other specialties as well, that they get patients who should be under someone else. I think one of the most important things there is to recognise that there's a risk associated with that.

I'm now a consultant. I've been a consultant for gosh coming on fifteen years now. And I think the experience that I've gained is to realise that that is a patient who's at risk. Because you don't know what you don't know when you're managing a disease that you don't normally see. everyone's trying their best, there's a risk because you're not picking up the subtleties. I'm sure you yourself, as a cardiologist, are much better at managing heart problems than I am.

But unless you're doing it all the time, it's very difficult to appreciate the subtleties, so we say. Thank you. So I think the first thing to do is identify risk. I think the second thing to do is to advocate for the patient to get them into the right stream. I think the NHS is extremely good at managing patients who have a clear diagnosis from the start. You know, if you come into hospital with an ST elevation MI,

your pathway's really clear, you're straight in the calf lab and it's so exciting and you get great care and that's really good. And the same as stroke, if you come in and there's a clear stroke and you're relatively young and you can be fombolized, it's great care.

It becomes much more difficult when you come in and it's either not clear what's wrong with you or in some ways even worse, you go into the wrong pathway. And then you're not getting the optimal care, you're getting perhaps things missed. And I think it's very important for the doctors who are looking after that patient to really advocate for that patient to be moved to the right team so that they get the care they would have got.

if they've been identified immediately. And sometimes you can't identify people immediately and that's fine. But once it is, it's important that they go into that care stream. So for the case we started with I don't blame anyone for not recognising it was an nepotising fasciitis straight away. That's a rare diagnosis and it was just pain in the arm. But if he had been recognized as being a nepotising fasciitis immediately, then different things could have happened which

I'm only speculating, could have prevented him having his arm amputated, we'll never know. But because he went into a different pathway, those things certainly were delayed, let's say that. In terms of this advocation for patience, who do you think is best doing it? Because I think when you start working, you want to save everyone. And I'd like to think as you continue working, you still want to save everyone.

But the actual process of doing that becomes slightly trickier, I think, once you're actually in the thick of it. And as much as I think everyone within the healthcare team should be able to advocate for patients. it's not always that simple. And sometimes you do need someone more senior actually saying, no, this is what we're doing. So how do you think we advocate best for patients in these situations?

I think the best way in this specific situation is for senior doctors to speak to senior doctors. In my experience, consultants very rarely are difficult about, you know, doing what's best for the patient. I find that very unusual. I find it's more common that at more sort of junior levels there's barriers put up because people maybe perceive that

you know, they will get into trouble or it won't be looked favourably if they take somebody. So I think it's best done at a more senior level with a consultant talking to a consultant about a certain patient who's under a certain team's care that may be better placed in another place.

Now, it won't always be the case that it's obvious which team places you'd go to, and that's fine. People are complex. But I think those senior discussions are important so that we basically have clear communication between teams.

Yeah. Okay. So if we move on from patient advocation, what do you think is the other big thing that we need to take away from this case? Yeah, I mean I think another big thing from this case is around uncertainty. And I think uncertainty is something that's very common in medicine because often the diagnosis isn't clear, often the best treatment option isn't obvious. Obviously sometimes time reveals what the diagnosis says.

And I think it's about how we as doctors deal with uncertainty. And I think there's two levels to that. I think there's the level of me as I was at the time of that case and me as I am now. So perhaps if I start with me as I was then, relatively well, very junior registrar, you feel very uneasy. It's very easy for junior doctors I know that word's not used so much anymore, but you know what I mean. To feel that they're not

heard or that their concerns aren't being addressed or to worry and that can lead to burnout and people leaving the profession. And I think we can all recognise that does happen sometimes, rarely but sometimes. And I think with that kind of uncertainty and dealing with when you don't know what to do, it is very important, I think, to communicate that to your senior.

I think sometimes well maybe you give me your opinion on this, I think sometimes registrars, house officers, SHOs, I'm using the wrong language completely, but there we go, that's just age. feel that they shouldn't contact consultants as much.

Whereas I think most consultants actually would welcome to be called about someone who somebody's worried about, particularly if you don't know what the diagnosis is. So I think that communication of uncertainty and saying, I I don't know what's going on here, but this person's sick. is important. I think as a more senior as I am now, I think it's really important to express openly that you don't know what's wrong with this patient.

Two diagnoses that I think are really important to make, as well as obviously making the diagnosis, and that is when you don't know what's wrong with them. As I was saying earlier about someone being in the wrong flow, if somebody you don't know what's wrong with them, they're at higher risk.

And I think it's very important to identify that you, as the consultant, don't know what's wrong with this person. And then think about how we're going to find out and what we're going to do. But communicate that with the team, communicate that with the patient. that there's uncertainty about what's wrong. Because I think that highlights to everybody around that we don't really know what's going to happen.

Now lots of people, you know, they get better and that's good. But some people get worse and we don't really know what we're dealing with. So I think communicating the uncertainty is really important. And then it's about within your immediate team, say you wanna host it world round, it's about listening to what people are saying and basically making an environment where people can make suggestions.

'Cause very often somebody will come up with something that's a very good idea. And I think you've got to create an environment where people feel free to just speak up and say, What about this? Because I find often people are advanced. And they've had ideas that I haven't because I'm so time limited on a post state world round. So creating an environment where people can speak.

And finally with that uncertainty is going back to the patient and just taking the history again. Because usually or not usually, maybe often, there's something in the history that tells you much more information than you had and it's just that you didn't have the chance just to go back to the beginning and think about how it started. So I think my sort of take home from the management of uncertainty now is you have to acknowledge it in yourself.

This is someone who I don't know what's wrong with them. And also anyone who's done general medicine will know that you'll see patients where you're not entirely sure what's wrong with them, but they're well. And, you know, you perhaps ruled out a few big things that you're worried about and you discharge them.

But I think with that discharge you have to be clear to the patient that we don't know what's wrong with you, we don't think it's anything serious, but come back if there's a problem or if it changes, come back. Because Again, there's a degree of uncertainty because you haven't got the diagnosis and the treatment sorted. So that's my feelings on uncertainty. Just as an aside

I said there was two diagnoses I think it's good to make on a post-date round. One of them's uncertainty and the other one is if somebody's dying. And so this is completely on the side, but I think it's very important also because I think that defines a different objective to the team. But that's perhaps for another podcast. Yes. We'll get you back for one on that.

I just want to pick up on something that you said about how maybe more junior members of the team may be scared to call the consultant. And I think that's really interesting and I'd like to think it's not just me, but I think the more junior you are, the more you've been taught that, you know, when you ring somebody for help, you need to have your S bar ready.

To have your S bar ready, you know, to be able to ask for this help and to show that, you know, you've done everything you possibly can for this patient. I think there's this feeling that you need to have done everything, you need to have a working diagnosis and then you need to say, I'm up to here, but I just don't know how to get to the next step.

And I think it's really interesting hearing you say that it's okay to say that you don't know. I think the more senior I've gotten, and again I I'm not saying that I'm not senior, but you know, years are experience. I do feel more confident in saying I don't know, but I also know that I've done everything that I can to start ruling out diagnoses to get to that point of saying I don't know.

So I guess my question in a very long winded way of asking you is when you are the consultant on call, taking calls from more junior members of the team saying I don't know, what are the points in a history or in a case? that you really need to know at that time so that you can give advice over the phone when we are dealing in such and certain cases.

Yeah, I mean that's a great question. I think the key thing here is the doctor's probably got objective reasons why they are concerned about this person. So going back to the case we started with, certainly by let's call it day two, the patient was tachycardic. They looked ill, grey, they may well have had a fever.

So the question was it's not I don't know what's wrong with them, it's that they're physiologically disturbed, they're sick, but I haven't got a diagnosis here. And that's what's troubling me, because without that diagnosis I haven't got a management plan. And so I think to escalate that to probably the consultant, but whoever that is, is entirely appropriate. And I think the the point you're coming with is there's a patient here who is unwell as evidenced by X, Y, and Z.

However, we don't have a diagnosis. So the question you're asking the senior person is, what is the diagnosis? It's a diagnostic challenge. But it's also about the escalation there. Because it's kind of straightforward in a way to escalate somebody who you've got a clear diagnosis for and they are a candidate for critical care and their blood pressure's in their boots because of XYZ and I know what I'm doing.

It's quite a little tricky when you've got somebody who you really don't know what the diagnosis is. So you haven't got a view of what the trajectory is going to be, but you've got that feeling they're sick. So I think the escalation there when you're talking to the consultant is about, here's why I'm worried about this patient, but I don't have a diagnosis.

You can say that these are the things we've done, but we don't know what the diagnosis is. And what you're asking the consultant there is to essentially help make a diagnosis, because that will guide treatment. And if you can't meet the diagnosis, put together a sensible plan and a sensible plan in terms of whatever specialties perhaps would know the diagnosis, but also what imaging or whatever tests might help you. Yeah.

So the other question that's coming to my mind based on something that you said and you said, well, maybe if we got the diagnosis he wouldn't have had the amputation, but we don't know. And I guess how do you deal with the uncertainty of feeling that you may have missed something. And I'm not saying this personally towards you in this Kate. We've all been in situations where, you know, a patient has taken a turn for the worst or the diagnosis is unexpected based on what we were working towards.

And you're constantly racking your brain, did I do something wrong? Did I miss something? How do I not let history repeat itself? And I guess that fits in quite well with our topic of uncertainty. And I'm just wondering how you deal with that. Yeah. I mean it's very difficult, isn't it, Moline? I mean, we have to be honest, we're all human beings and everybody hates the idea of having made a mistake.

And so those cases and there's others that come into my mind now where things have gone wrong and it's been, you know, heart wrenching and there may have been complaints and those processes happen. I don't have a magical answer. I'll tell you what I do, but I mean, I think the first thing to do is you've got to try to be as objective as you can.

It's horrible, it feels awful, we all know that. But it's important that it goes through an appropriate process, a governance process where somebody else, colleague, not necessarily a friend, but there's some kind of governance process that looks at the case objectively. If you did make a mistake, then you have to learn from it and to an extent own it. And sometimes it's helpful to actually present the case and discuss it. These are hard things to do because it's not a nice thing to do.

But I think it is important to see it as an entity for which you're gonna learn from, rather than something that you're gonna feel shame about. Because, you know, most cases the reason the diagnosis wasn't made so is because it was hard. It wasn't obvious. And it's not usually the case that it's somebody's fault. It's usually the case that it was a tough case to make. There may have been a series of little mistakes.

a series of things came together that ended up in a result that wasn't as good as it could have been. So for instance, for the patient we started with, they went into the wrong pathway in the hospital, not through anybody's fault. But because the initial question was, is this heart attack? When, you know, you could speculate that they could have been seen and could have been done a different pathway, but it wasn't their fault. It was the first question that was asked.

And you know, probably reasonable, he had arm pain, he looked awful. That's not an unreasonable assumption. So I think for me in terms of where mistakes are made, it's not nice, but I think you have to try to take that mistake, have somebody else look at it and think about what you've learnt from it. Because it's very rarely that it's just one person's mistake. It's very much more common that different things came together.

Yeah, I think that's really important and it's so easy to think that you were that one doctor that only treated that patient and nobody else had any info whatsoever, but that's almost never going to be the case. No, exactly. It's almost never the case and it's usually that the system along different ways things didn't go as they should.

Because coming back to what I said earlier, you know, the NHS is fantastic when the diagnosis is single organ and very clear because that's the way we set up medicine. You're a cardiologist, you deal with problems of the heart. If someone's got a heart problem and they come to you, they get great care. But people in fact can be unclear, they can have multiple problems and that's when it becomes more tricky.

But I think patients under the care of the wrong team, patients where the diagnosis are uncertain are two examples of red flags where you as a doctor need to just take a little bit more care but you have to think a little bit more because I think the risk is higher in those settings.

From a clinical point of view, because we're talking about this case for how we deal with perhaps non-clinical aspects of care, but I think negrotizing fasciitis is one of those diagnosings that you may go years and years of your career never seeing and just reading the textbooks or hearing about from colleagues. Is there a piece of advice that you would give to anybody listening that if you see X, Y, or Z, then just have it as a potential differential in the back of your mind?

Yeah, absolutely. I mean, I think the clinical learning point from that and other cases I've seen subsequently is it's pain out keeping with what you see on the skin. So you may see somebody who's got an enormous cellitis. Very clear. And they can be hemodynamically quite compromised. They can have raised inflammatory markers. They can have AKI. They may also have some nectar infasciorites and often they're imaged for it.

But the more, if you like, tricky case that is not an uncommon presentation is pain, but because the infection's subcutaneous. Not a lot to see on the skin. So fever, tachycardia, again, may have AKI, raised inflammatory markers, but not a lot to see on the skin but pain. And that was classic of this case. He was in a lot of pain, but there really wasn't anything to see on the arm. And I think that's where we came unstuck.

and where experience teaches you know something to learn. Um so what I'd say to people is pain with fever, raised inflammatory markers, but not a lot to see on the skin. Thank you.

I guess my final question, I appreciate we've touched on it, is I think we've all had those cases where your stomach just clutches. Like you see a patient and you don't even need to take the history, you just know they look poorly and you know it's going to be a difficult case. Other than just saying get on with it and trying to give yourself a bit of a boost, how do you advise that we deal with those situations? Because I think it's very easy to talk yourself out of it.

It's very easy to say, you know, that I'm doing everything I can, but it's not enough. And I think that they're just they're that class of patient that you feel that whatever you do, just

isn't going to be good enough and you're just waiting for the bad outcome. And I appreciate that this is all very descriptive because I can't necessarily put my finger on it, but I'd like to think we've all had those patients where your gut is just clenched and you just don't know how to deal with the situation.

Yeah, absolutely. And I can think of those patients from recent takes. I mean the first thing to say is everyone has them. I still have them now, a hundred percent. So it's not a thing of being more junior. It's still there now. How I deal with that is firstly ask other people for their opinions. Usually you've got some kind of idea of roughly where the specialties are. So to ask.

And ask for advice from other specialties. You don't necessarily have to take it and you don't necessarily have to refer to them. But to ask for expertise from other people and take opinions, I think that's healthy. I think as you get more experience, experienced you get better at quite quickly determining whether this is somebody who's going to be escalated up to critical care very quickly or somebody who's going to potentially die very quickly.

And of course we make escalated decisions for patients, of course we do. But I think with experience you can develop that sense of this person's very sick, this is really quite bad, and I don't think that they're going to survive this. versus those patients who are very sick and there's something reversible that critical care can help with. So part of that feeling of worry and you're out of your depth and you can't cope is partly with time comes with saying, I think this person's dying.

And that's a nice segue back to what I was saying earlier, and that is I find that is quite a relieving diagnosis to make because it changes the goalpost. you say, Okay, look, I don't think this is a survivable illness. And then you can almost feel everyone around you sort of relax a little bit more and say, Okay, right, well, let's focus on yeah, this is the seat in the care, discuss with patients, discuss with the family.

focus on symptoms as well as active treatments and wind one down as it becomes more unwell, that kind of thing. So I think it's also helpful to early on in that situation have that decision making about is this somebody who's actually this is probably an end of life illness.

Or is it actually quite the opposite of somebody who needs to go to ITU, needs to go to theatre, where there's a reversible morphology that needs aggressive treatment? So I find that's helpful as well. But to answer your question, there's always those patients and they are difficult. And my advice to anyone listening really is ask for help from you know, if you're more junior, if you're seniors, but also I do from other specialties all the time. Yeah, what do you think to this?

I'm not referring you the patient, but I really don't know what's going on. And then also that decision around, which comes with experience, are they somebody who's got a pathology that is gonna go to you know escalate up to critical care because it's reversible, or is what you're looking at a potentially end of life episode? And again, I think that reframing of it can help in diffusing the stress.

Sorry, I appreciate that I keep getting one question after the other. How do you deal with talking to families that you think their loved one is dying when there is no diagnosis? Yeah, that that is a good question. I'll slightly rephrase it. Usually there is some diagnosis that you can put your finger on. It's unusual I think to get to that stage where there's no diagnosis, but it may be, you know, sepsis and you don't know where it's from or something like that. So that's difficult.

I think it's difficult as well because I find it's a challenge when you've got the active treatment sort of narrative still going. But it's become clear that the patient's deteriorating and you together with the family and the patient

have established that their ceiling of care is the bed in front of you is not going to be ITU. And I think that's difficult. So you'll often have these conversations where you say they've got a severe infection and that's what you think it is and you're treating for that, but they're not getting better.

As an example. In which case you've got that sort of Ivy fluids, Ivy antibiotics kind still going, but then you're also then going to add in sort of anticipatory care meds and focus on keeping them comfortable. I think that's difficult. What I think the key there is to not

see it as a one-off discussion with the family, but rather to see it as a moving situation and to see it as the start of a discussion that you can then, you know, revisit a few hours later as it's become clear that they're getting worse or better. And to see it as a ongoing process. Now that's difficult because you we've only all got as much time as we've got. But I think it's helpful to keep revisiting it with relatives. But it's a tricky one. It's a good question. It's a tricky one.

Because it's much clearer when they've got, say, you know, a known metastatic cancer and they've been getting weaker and weaker for weeks and this is clearly end of life. It's much harder when out of the blue they've come in with cardiovascular cloud. and you're not a hundred percent sure why.

I think, prof, if I can kind of summarize what I'm learning from talking to you, is that if we go back to the basics, we can't go wrong. And the basics are just to keep talking openly with one another and to say when we don't know, to ask for help and to just keep reassessing and the more we keep doing that, it doesn't necessarily make DRC mistakes easier, but I think it allows us some calm within ourselves that we did everything.

Yeah, I think that's very nicely put, Marlene. I can see you've got a great future in podcasting. And I think as well, to acknowledge uncertainty openly is helpful to highlight to yourself and others that we don't know everything that's going on here. And one thing that you just sort of reminded me of is also to start a treat.

To reassess has it worked is very important. So very often you see people prescribe fluids or prescribe antibiotics or whatever treatment it is, but then they don't go back and assess has it worked. And is it the right treatment? Because sometimes with that uncertainty, you try treatment and it doesn't work.

And it's because it was the wrong treatment with the best intentions. So then to switch to another treatment is the right thing to do. So that reassessment of the situation is important. But yeah, I think you summarised it absolutely wonderfully. Thank you. Thank you very much. So before I leave you, any final thoughts from yourself or our listeners? Final thoughts are that medicine is great, being a doctor is fantastic.

And as you get more experienced, it changes. I'm not sorry it necessarily gets easier, but it does change. You've got more experience. But I think you still face cases that are difficult. You still are going to make mistakes. And I think creating an environment around yourself, both in your own head and around you, where you can speak openly about things you don't know and look for problems, and then when the problems come, find solutions is a healthy place to be.

Thank you so much for your time. Thank you for sharing your thoughts. Thank you for encouraging us all to not necessarily make mistakes, but to own them and to keep talking to one another. And thank you to all of you for listening to us. You can listen to career conversations episodes or clinical conversations episodes. both on Spotify and Apple Music and any other podcasting site that you listen to us from. So thank you so much yet again. That is a pleasure, thank you.

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