#59 - MEN1, Medicine & Mistrust: Why Patients & Doctors Misunderstand Each Other (Top Consultant)

Ever left an MEN1 appointment feeling more anxious than when you went in? – Season 2, Episode 9

Professor Maralyn Druce, leading London Consultant Endocrinologist, joins me for an honest conversation about where tension, mistrust, and misunderstanding can quietly grow between patients and clinicians — particularly in rare disease care.

We explore:

• Why MEN1 so often exists in a grey zone of uncertainty rather than clear answers
 • How “watch and wait” can feel profoundly different for patients versus doctors
 • The anxiety many patients carry between appointments, tests, and scans
 • Why feeling unheard doesn’t always mean someone isn’t listening
 • How better outcomes depend on partnership, trust, and shared responsibility

About our guest:
Professor Maralyn Druce is a Consultant Endocrinologist specialising in both general and complex endocrine conditions, including thyroid, adrenal and pituitary disorders, neuroendocrine tumours, and inherited syndromes such as MEN1. She is known for her holistic, patient-centred approach and her commitment to ensuring patients fully understand their management options. Professor Druce is also a senior medical educator, serving as Deputy Dean for Education and Head of Governance for undergraduate MBBS and dental programmes at Barts and the London, Associate Dean for Undergraduates at St Bartholomew’s Hospital, and Founder and Director of the Postgraduate Diploma and MSc programmes in Endocrinology at Queen Mary University of London. She trained at the University of Cambridge and University College London, completed specialist training at Hammersmith and Barts Hospitals, held a Wellcome Trust Clinical Research Fellowship, and was awarded a PhD in physiology at Imperial College London focusing on gut hormones and energy regulation. Find out more about Professor Druce here.

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Disclaimer
I share my personal experience as a MEN1 patient. Nothing in this episode, including the opinions of my guests, is intended as medical or holistic advice. Please consult a qualified professional before making changes to your care.

Transcript

Some people feel unhappy with their care because what they're unhappy with is having the condition. Living with uncertainty is one of the hardest things. Explaining uncertainty is one of the hardest things as a clinician. People come with a need to be heard, and that's part of our job as well. That's why we are clinicians. Otherwise you get AI to do this. The most important thing is the most important thing to you, but often the most important thing to you doesn't turn out to be the thing that's the most serious for your life. I have to know that I've thought about all of those things in my half an hour with you, what we need to do about them, how severe they are, do they need intervention? I think there has to be something of trust in the system. If the NHS was perfect, none of us would moan about it. But I think people can feel reassured that there are safeguards. We have to work in partnership here, I think, where we can.

Today I sit down with Professor Maralyn Druce, Consultant Endocrinologist at St. Bart's Hospital in London. We talk about the science and art of managing a rare condition, the role of trust in patient doctor relationships, and why the watch and wait approach doesn't always feel so passive when it's your body on the line. Stay tuned to hear how clinicians handle uncertainty in MEN1, the challenge of personalized care versus protocol care and why being well means more than just blood test results. Let's dive back in.

Maralyn, welcome. When a patient walks into a consultation room, what is it that a consultant might be feeling at that point?

 I think the first thing probably to say, and I can only speak for my center, is that as a clinician, I understand that as a patient with MEN1, it's a complex condition. There are lots of parts. There are lots of moving parts through your life, and some of the things that we've tried to do before the consultation is try and address some of that. For example, by trying to have our MEN patients come to a dedicated MEN clinic, which means that your clinician is already in the MEN headspace when you come in. They're not busy thinking about other kinds of clinical problems, that we're already meeting you with what we think we need to be addressing. And we've also made some structural changes in those clinics in that patients with MEN syndromes have a longer appointment slot than an ordinary follow up. And also we take pains to ensure that our specialist nurses who are linked to the patients with the conditions are around and about in the clinic, that our nurses who are responsible for things like blood testing are available if you have to go off from the clinic and have something done. And where we can, with great thanks to her help and support, we've worked with Jo Grey at AMEND to try and have an AMEND presence in the clinic as well. So part of the going through has been in the prep, I would say. The second thing I suppose that is always in our minds is there's the sort of the immediate and then the strategic and the immediate, there's always two things that we know we need to meet you with straight away. One is, is there a current big burning worry or concern or new thing that has happened? And often there is, and sometimes it's MEN related and sometimes it isn't. But it'll be the thing that you are most keen to address, and we have to know what it is upfront. And the other thing that's often urgent and as annoying for, well, it's, I was gonna say, it's as annoying for us as it is for you. It's probably less annoying for us than for you. But I feel your pain is that we know that often we've tried to organize it, that people have had all investigations before they come so that we can talk about those investigations in the room. And those may be to address an an active problem, but it may be as part of the surveillance that I'm sure we'll talk about in a minute. And I know that this term scanxiety, that you may have heard of, it's a very real phenomenon from the minute you get into the scanner, you are worried. There's no reason to worry really once you're in the scanner compared to five minutes before, you're still the same person and there's no reason to worry straight after. But it's a natural phenomenon because now, whatever was invisible might be visible and you're coming to the clinic expecting to see those results and expecting either to be reassured or to be given next steps. And we know that the NHS is not necessarily working as efficiently as it could, and it is not inconceivable that even if we've pre looked, and I do try to pre look, but even if we've pre looked and we know you are coming and we know you've had a scan, we may not yet have the specialist report from the radiologist. We may not have yet had the opportunity to talk about it in an MDT, and I recognize that is going to be a source of frustration and stress and often I know I need to meet that head on before I meet anything else. And I guess those are my two top things. But they're not for me, the things that I hope I'm gonna be most focused on, but I recognize that for the person coming into the room, they may be addressed very quickly, but actually they may carry over into a lot of the consultation.

I suppose an MEN1 patient or any patient has never really been shown the rubric of what an appointment looks like from say, your side of the desk. So we come in, I guess, with an agenda in a manner of speaking and you have yours as well. And it's about trying to get those to meet somewhere in the middle. One of the things that I talk to my community about is how to show up, prepared, open ready, but also, no one wants or necessarily expects to hear difficult news. I think that's one of the things that is sometimes hard to prepare for. So it is really interesting to hear definitely how it happens from the practitioner side. 

That's not even the agenda yet. That's just the kind of preamble. 

Tell me the rest. 

So when you're in the room, obviously my agenda is to listen to you. I've got some stuff I want to get through because I know as you do that MEN1 particularly, but MEN2 as well, is a complex health condition and lots of things might happen and I have to know that I've thought about all of those things in my half an hour with you, even if they're not live for you. I have to have checked that they're not live for you. And it might not just not be from symptoms, it might be from a physical exam, it might be from the surveillance investigations that we've had. It might be from something else, but I've got to have thought of all of the things that you are at risk of and mentally addressed, whether they're there. If they are there, 

what we need to do about them, how severe they are, do they need intervention? 

If they're not there, when do we need to look again for them? If they are there, how do we go forward with them? So I'll be thinking all the way through about, first of all, your parathyroid glands. Do you have hyperparathyroidism, what is your current calcium? Have you had any treatment for it? Do you need any treatment for it or you want any medicines for it? Do you have any symptoms from it? Do I need to be worrying about the impact on your kidneys or your bones? Have I thought about that? When did I last look? Have I ever done a 24 hour urine collection for calcium. Have I ever done a scan of your kidneys? When was the last time I thought about a DEXA scan for your bones? Then I'll think about your pituitary gland. Have you ever had a problem with the pituitary gland? Do you have any symptoms? Do you have any new symptoms compared to old symptoms? When did I last look with a set of blood tests and what did they look like? When did I last look with a scan? Was it normal? When do I next need to do a scan? Same for the pancreas. Do you have an active problem with the pancreas? When did we last look? When did we last do blood tests? When did we last do a scan? What did it show? What does that mean for you? Do I need to go and take any of your scans over to our, one of our MDT meetings, to chat to some surgeons or to think about medical therapy? Do I need to look again sooner? Do you need extra special sort of scans to characterize anything? Are there any other things? Have I thought about your adrenal glands? Do you have any skin problems? Is there a lipoma that's annoying you or upsetting you? Have I remembered to check your lungs for any new lesions, and of course, you, whoever you are in front of me is my patient. But as a person, you're part of a family. Do I know about your family? Are there other people who are affected not just for the purposes of and am I following them up and have new things happened to them, but also are there new family members with new things we need to think about or indeed, are there any things happening in the family that don't necessarily predict disease in you, but are weighing on your mind in terms of what might happen to you and will your illness look the same as their illness? And what about your own future family and your family plans? Are you currently thinking about a pregnancy? Do we need to think about genetic screening or fertility counseling or the impact of risk, or have you got some children and have we thought about when they're going to need screening and who they ought to see and when their surveillance ought to start? So we've got a big sort of mental list of things that I mustn't forget. I've got to be reactive to you in terms of which is the most concerning for you that we might need to address first. But I haven't done my job if I haven't thought about all of the others. So, what could be mistaken as being rushed through a consultation, it may not be mistaken, maybe I'm doing it and you need to stop me, but, what could be perceived maybe as rushing through a consultation might be your clinician just making sure they've taken this half hour opportunity to think about you holistically, because that's their chance to do so. So that might be my agenda. That might also be your agenda, but you might have come with some completely different agenda. I know people often do because I've been on an AMEND fundraising three peaks walk once with 20 people who were all speaking to each other about what their real life concerns were and very few of their real life concerns were, I wonder if my pancreatic lesion has grown by three millimeters. I must remember to ask that at the appointment. It was usually other things that we don't even think about like, can I get insurance for my holiday? What will happen to me if I become unwell? How should I talk about this illness to my children? All kinds of things that haven't been top of my agenda, but maybe you need to bring them to my agenda. 

It was news to me when you said at the beginning that MEN1 patients and MEN2 patients, because they're more complex conditions, are given a longer consultation. I had no idea that that was the case and I think actually will be a relief to a lot of people listening back to hear that there is extra time given to the complexity of the condition. Also I have a new found respect for the mental list that you have to keep in your head of what to go through. It really is fascinating to me that there is so much to take into account and I could be coming in with a completely different agenda and somehow we've gotta make it work. 

There's a lot and of course 

the most important thing is the most important thing to you, but often the most important thing to you doesn't turn out to be the thing that's the most serious for your life. 

So 

we have to work in partnership here, I think, where we can. 

Do you ever feel as though some patients turn up and it becomes a sort of emotional baggage drop where people just wanna be heard about what's going on in their life. You've got a job to do because you're the medical professional and there's certain kind of boxes to tick. Do you have to balance the emotional side of things with obviously the job that you have to do, which is very logical and very kind of rational driven, I guess. 

I hear what you're saying. I think it's okay. I think that it is correct that sometimes 

people come with a need to be heard, and that's part of our job as well. That's why we are clinicians. Otherwise you get AI to do this. 

AI can do a lot of this. If we were really just working to a checklist. When we were growing up, it was all about is medicine and art or a science? Going through, have you had all your surveillance, is not you could actually automate it. We don't, but you could. The way I get round the automating is I tend to try and prep for my clinics if I can. So at least shortly before I'll have a look at the bit I just said and try and work out for myself, which things I can be less worried about, as long as I know what my plan is for them. Because that gives us a bit more time to do the stuff you've just talked about, which is, this is probably the person's only appointment with their specialist team for a year, and all kinds of key things need to come out in that conversation from their perspective. So it's not my job to close that down so that I can tick what their calcium is. I just have to be sure that at some point within that interaction, I've had the thought.

You mentioned the walk you did with AMEND. Obviously to whatever degree you are able to share, I wondered how that helped you grow space as a clinician for, let's say, the more emotional side of things, for maybe those questions which patients have, which most clinicians just don't have any idea that that's what's crossing their mind from day to day.

Whenever I was a trainee, when you do endocrinology and diabetes, diabetes is half, endocrinology is half. One of the rules that one of the things you had to tick in your training was you had to go along to a diabetes children's camp so that you could see how diabetes was as a lived experience. And in a way this was not dissimilar. You don't have to do it, but, you go into clinician [] specialties 'cause you like people, right? You want to listen to people, you want to speak to people. So, it was great fun to, to do this three peaks challenge and it was 32 degrees and we were all kind of expiring with the heat. And so some of the things that came up in conversation were very clinically driven. Like, I'm on steroids and I dunno how much water to drink and should I take an extra? But the bit that was real learning for me was all the other conversations, most of which weren't about MEN. I mean, normal people are, normal. People are living a life. What's my son gonna do? Is he actually going to ever leave university? Is he ever gonna get a job? Like obvious stuff. But in amongst it, the day-to-day concerns around fitting in scans, the hassle of doing a 24 hour urine collection, the annoyance of driving a long way to an appointment, the concerns about family planning, the medicines management. Where will I get my prescription? What about when I go on holiday? How can I work out whether I need to keep this thing in the fridge or not? It was very useful. I'm not sure that I've necessarily been a good girl about applying it all in the real moment, but it was very useful to hear where the concerns were in conversation. They weren't the ones I'd assumed. They weren't the existential ones. They were the really day-to-day ones. I think the other thing that was useful, and I I often say to patients, it's not just MEN, you have to be really quite clever and you have to be really quite biologically minded. By the time you've done medicine for 20, 30 years, it's easy to forget that not everybody is biologically minded. People are interested in other stuff and therefore. What you as a patient will bring to the table in terms of your level of interest about how things are explained to you or what they mean is really variable. So some people will, of course know a lot, will understand a lot about genetics, will come with very specific questions and very clear questions, and some people really won't and won't necessarily want the nuts and bolts and won't necessarily remember some of the key stuff. And actually their much bigger concern is managing their family and might miss a lot of appointments and we're saying it's really important, it's really important for your health. And they may not actually be that engaged. It's not their top priority. It's about trying to find the right way through about keeping people on board for what? For what they need in terms of health prevention while not overloading them with stuff that they don't want and giving people who do want a lot of information, the kind of information that they don't feel patronizes them.

I can't remember where I heard this and I don't want to misquote whomever it was. Apparently one of the reasons why so few doctors suffer with ill health, and I'm gonna say few doctors in comparison to say the rest of the population, is because they don't fear disease. They don't fear illness in the same way that the rest of us do. Now, you're welcome to disagree with that if you want to. 

I disagree with it, but I think doctors are quite polarized in that regard. I think that there's a sort of, yes, they don't fear illness, they know what it means. It all feels very familiar. There's definitely a sub cohort of utterly paranoid, like medical, you know, every medical student goes through a phase where they've all got Cushings and then they've all got MS. Everyone has everything because they find it alarming. Although I equally saw a good joke the other day, it was a cartoon of a child, of two doctors, and it was their tombstone. And the tombstone said. I did wait and it didn't get better. So, we are also good at ignoring symptoms. That's probably a fairly true caricature as well, but I'm not sure we don't get ill, and I'm not sure, we don't fear illness. I think sometimes seeing it if you're of a certain personality makes you fear it more. 

That makes me laugh a lot, the tombstone. I think maybe where this person was going was this idea that obviously you are so, maybe the word is familiar. You are so much more familiar with the medical side of a condition because you study it in and out and you see it in patients and you write papers on it and all that sort of thing. So perhaps your understanding of worst case scenarios, best case scenarios, very likely scenarios is going to differ very much from a patient who doesn't necessarily understand the diagnosis. My question is, do you feel it's helpful for patients to do a load of research into their condition to better understand it in the terms that you understand it? Or does that sometimes have a negative effect? 

I think it's horses for courses. I think everybody deserves access to good information. I think everybody deserves access to reliable information, and I think everybody deserves access to non terrifying information. But people are different about how much they want to know. I'm very reliant on being able to signpost people to resources that other people have thought about. I'm very grateful, for example, for all the AMEND leaflets that are available, for patients with neuroendocrine tumors. I often also signpost them to neuroendocrine cancer uk. We have to be quite careful about signposting them to the bits that are relevant to them, not the bits that aren't relevant to them, which can sometimes provoke the whole unnecessary range of terror because it's your bit that you need to be interested in. So everyone deserves access to good information but not everybody wants it, and that is okay. And it's the reason why if you go, for example, to the Macmillan website as a patient, and you've got a cancer, any cancer, doesn't matter, you've got lymphoma, nothing to do with MEN. And you look up lymphoma and you, you go to the Macmillan page and it'll say all the things about lymphoma, and then there's a little green button at the bottom, which sort of says, if you'd like to know about prognosis information and the different stages for this cancer, click here. Otherwise just please continue reading the page. I dunno how people don't click once they've seen the button, but it invites you to explore or not explore depending on what you are ready for. And I think that's important as well. So people ask, of course they do, but often they ask in ways that help you understand the limits of how much they want to know right now. 

So this is perfect to land me into my next question. I always love asking this to different clinicians 'cause the opinions are varying and sometimes quite controversial. How do you feel about the patient portal? How do you feel about patients receiving their results immediately, perhaps even before you've had a chance to look at them? 

I think the idea is good. The execution is terrible. I think that it's your data. There is no reason for you not to have your data. It's your body, it's your medicine, it's your data. I think it is unfortunate that firstly, it arrives unfiltered. It arrives un annotated. So in other words, if you do not know whether a calcium of 2.7 is significant or not, if you're not a panicker, you'll ignore it. If you're a panicker, it'll generate 12 unnecessary phone calls to a hospital, to a switchboard that's not answering. Similarly, when we do blood tests, we do a range of things that aren't material that are more kind of general health related, and there might be minor things outside the range there that we know are of no significance or part of a normal population. I don't like that it comes unfiltered and un annotated. I don't like that. I mean they are working on it. But radiology reports historically, right? A clinician requests a report of another clinician to inform the clinician. So they are written those reports with the clinician's eyes in mind. They're not necessarily written in non-technical language. They don't make it clear what is and is not a finding of significance. They don't make it clear what is and is not something to worry about. And that again, comes through unfiltered and un annotated. And although there is supposed to be a sort of moratorium, a one month moratorium where the report is available, the clinician may have seen it, the patient hasn't, to give the clinician a bit of time to get some stuff in there, it doesn't happen like that because we don't know that the report has come. So how it is being rolled out and the way in which the information is presented, I think is deeply unhelpful. I don't have anything to hide in terms of patient care. I will never keep something from a patient that I know that they want to know. I would never do that, but I want to be able to do it alongside real time explanations and Patient Knows Best does not enable me to do that, and only sends certain kinds of data through and not others. And there might be other things that would be more helpful than what you get. It's not where I would personally choose it to be. 

Do you think there's any solution to it? Do you think there's a way, if the idea is helpful, of solving that execution problem?  

I think we've just kind of let the cart go before the horse a bit here. For very well-founded, good, intentional reasons. I just think things have happened that maybe the consequences weren't as thought through. And of course, once you've said everyone can have their radiology report, then you're looking for solutions to fix the problems that you found as opposed to looking for good ways to make it happen.

So let's say in an instance, I have some blood tests or I have a scan and I get the results through immediately 'cause they pretty much come through immediately and something freaks me out because I didn't know it was there. Or I don't know if my clinician knows it's there and my impulse reaction is like, oh my goodness me, what do I do? What would be your suggestion in that situation? 

There are various ways of getting at this. All of them then cause problems at the other end. You don't get the quick answer that you want because one is you can ask your GP, but of course they're incredibly busy and can't make an appointment and it's not straightforward. Two, you have probably got a specialist nurse allocated to you who you could ask. You've probably got their phone number, but equally it's not duly helpful to them to have 50 patients calling every day about a minor glitch in their white blood cell count because they're not, there's one person and they actually, they're supposed to be sorting out the people with the progressive cancers, so it's, they're a person you can ask, but it doesn't help the system. It's important for you. You mustn't not ask, but you can see how then you'll end up with a slower answer. Similarly, for us, we've got a one one portal through to endocrinology. There's an email that you can email for non-urgent questions, but everything comes through there from my appointment's not right to, I've made a complaint to, I need to change something to, oh my gosh, look at my radiology report. And of course, what that means is that as soon as the floodgates open in terms of that email, the people who respond to the email fall behind, which means that at the moment there's a lag of about four weeks, at least on our email for answering those emails, which were always supposed to be non-urgent, but in your mind, if you've got something, as you say in your own words, has freaked you out, you weren't hoping for a four week turnaround. So we've got ways of you addressing what your questions are, but we've not built structures capacious enough to deal with the range of questions that will come out of. The not so relevant bits of the results that have hit your inbox.

You just hit the nail on the head there. You've described exactly what my experience has been. I am fortunate, personally that my clinician gave me his personal email address, which is really kind and very generous thing to do, and I'm very respectful of his boundaries. Not every clinician, understandably, wants to do that or can do that. Is it something that patients can get away with asking without feeling guilty? Or do you think it's generally as a rule of thumb, it's better not to go down that route? 

Historically we've often done it and practically it's the wrong thing to do for governance because if you email an individual clinician and they email you back, it doesn't form any part of your notes. It's a whole separate conversation that goes on and in terms of the governance of your care and where that correspondence then gets put. And if another clinician sees you do they know the conversation has happened. And what if I drop dead tomorrow and all your questions are sitting in my inbox? Or I just decide, I can't answer anymore. It's a governance problem to the direct line in and out. There is a separate workforce planning issue, which is that, I'm sorry to get terribly political about this, but the NHS for many years has relied on a huge bank of goodwill in terms of people's time. And make no mistake, clinicians are there for their patients and want to be there for their patients, but if answering patient's questions is taking four hours of unpaid time in their week, either they'll get to burnout quicker or four hours of something else isn't gonna get done. That's an NHS problem. We need to know that that hidden work is work that needs to be done rather than sort of just burying it under people doing their best all the time. And of course people want to do their best all the time, but politically we have to know what the needs are. 

That makes complete sense and all big systems have to be able to function. I think a lot of patients might not necessarily know, or this might be the first time they're hearing that, emails going back and forth is not paid time. That that's a clinician staying on at the end of their day or using their weekends.

I wouldn't want anybody to feel that their clinician resents it. If their clinician has made the offer, it will have been made with an open heart. I just think we have to be mindful of what need to be caveats around governance and everything else. 

So that we can give listeners here something really tangible, let's go back to the instance where I've got my results back and I freaked out and let's say, I've given it a couple of days. The initial panic has worn off a bit, but I still don't feel quite right. Having to wait for that consultation, that next follow up, that could be six months down the line. What are my options at that point in terms of trying to get in contact with someone in the know?

I think it's the same options. I wouldn't for a minute suggest that you must not use those options. You've been given the options for a reason. It's just that none of them will give you an overnight response. And I think there has to be a bit of some something of trust in the system. So if there is something awful, there are certain things that are supposed to happen internally. So for example, if a patient has a blood test result and the glucose is 2 unexpectedly, or the sodium is 120, and the lower limit of the reference range is 135, or there's a new cancer on a scan that wasn't there before, it's supposed to trigger some urgent things happening to inform the clinician who requests the tests. So if we trust the system, if I get an internal urgent notification that you've got an enormous new lump on your pancreas, then I should be doing something about it at my end. Whereas if you've got a minor perturbation in your white blood cell count, that doesn't matter. It's not gonna trigger anything internally. So by all means, use the roots we've just said, by all means, but they're not designed for immediate responses. 

I think it's really reassuring to hear that when something like that gets flagged, that if it's very important, or even if it's not very important, you will hear about it and then it's up to your discernment to decide whether or not you follow it up. I think sometimes there's this fear based mis illusion maybe on a patient's behalf that because we're in a massive system and you do hear horror stories about people slipping through the net, that maybe this thing's been flagged and the hospital or the consultant or whomever has absolutely no idea, I think that's what then creates that panic of like, oh my goodness me. And then as you say, you get trapped in this thing of, my email's not being answered and it's not 'cause no one cares. It's not because you're not important, it's because there's just a way of doing things. And I, for me anyway, that's been quite helpful to hear.

I'm not saying it never goes wrong. Of course it could. There are gaps where things have not yet been reported. So, for example, there may be a thing on a scan. It may be taking four weeks, six weeks for the radiologist to report. So nothing's gonna be flagged until the report is written. So I'm not saying it's perfect. 

If the NHS was perfect, none of us would moan about it. But I think people can feel reassured that there are safeguards. 

And I think people can also feel reassured that every hospital does also have a PAL service, a patient advocacy and liaison service. Their voice is very strong, so you don't have to be making a formal complaint to be raising a flag with PALS. If you really think that there's something wrong and you've not heard, and you should have heard, and you're not sure why you're getting no responses, then there will be a phone number and an email for PALS for your hospital or your service that you can feel empowered to use.

I wanted to go back in the process a bit to the diagnosis stage because there are many patients tuning in who've maybe just been diagnosed or they're suspected MEN1 and haven't had a kind of clear result back. A lot of the time there's frustration because they're dealing not with a specialist center quite yet, they're still dealing with the GP or maybe it could actually be an endocrinologist but doesn't necessarily know MEN1 very well. Obviously you are an absolute specialist in MEN1, so you might not be able to speak from experience here, but what could you tell patients in that situation that might help them understand why things are slow or why things are very difficult to get moving? Because there's just a lack of knowledge around the condition at that stage.

Sometimes it's not a lack of knowledge, it's that the condition presents stepwise. So sometimes it's very obvious. Someone walks into the door, they've got low blood sugar because of an insulinoma and someone measures the calcium. You can see the calcium is high and they say, by the way, my mother's already been diagnosed with something. Well, then it's a very obvious, but, of course someone has to be the first case in their family. Someone has to be the first presentation of the first case in their family, and they may present with only one thing. So you might, for example, present with hyperparathyroidism and we are getting better now at guidelines around if you're very young and you've got high parathyroidism, even if you don't have anything else, you get a genetic test, for example. That's new. Genetic tests still take a couple of months, three, four months sometimes to come back. And even when they come back, there's a definite gene, there's definitely no gene, or there's a variant of uncertain significance, and no one's quite sure what to do with it until a second bit of the presentation turns up. So sometimes it's just the natural history of the condition. That means you're not sure and you feel like maybe you're in a holding pattern and you're having one thing treated, but you've got an anxiety or a suspicion about something else. Similarly, sometimes, conditions in MEN1, they're, they're rare, but they're not like mad rare. So people can have two conditions that would sometimes come in MEN1. But it's chance, and the older you are, the more likely that is. You might be 75 years old in a clinic where you've got hyperparathyroidism and in your past you've had a pretty common type of pituitary tumor, and you're suddenly anxious that no one's thought about MEN1. And yes, maybe they can send off a genetic test, but they kind of know that the likelihood remains pretty low. So there's something about the evolution of the condition, most centers are linked in with other centers and there isn't a sort of formal accreditation for being an MEN1 center. It's just some places are better placed to run specialist services. We are very fortunate. It's easy for us to admit patients, and we've got a day ward investigation unit set up. So that's why we have the MEN clinic here. But, the clinicians at our sister hospitals could just as easily do it. It's just that our structures are a bit better here. But equally some patients might choose to be looked after somewhere else because it's more convenient. You can always ask of your clinician if you think you've got something and you are not in a specialist center and you want to be seen in a specialist center, you can ask for a referral, you can ask for a certain opinion, you can ask for your GP to refer you to a different center. And indeed even patients who are in specialist centers often say, I'd rather have the opinion of a different specialist center. So it might be the evolution. It might be that you wish to ask. It might be that you're very happy where you are. 

I think a lot of patients get stuck in healthcare with a certain team and it's not working and they might not have any idea that they can change center or there's a bit of resistance because that's difficult and could be awkward. How would you encourage patients to get their best care? Also, understanding that sometimes we're gonna hear things that we don't necessarily like, and that doesn't make the clinician a bad clinician. It doesn't mean that they're not necessarily practicing their job well. It's just that it is a very complex situation to be in. Is there a sort of deciding factor as to, right I'm gonna move 'cause this isn't working for me, versus I'm gonna stick it out because actually maybe something can be done differently. 

I think it depends a lot what the problem is. I think exactly as you say, 

some people feel unhappy with their care because what they're unhappy with is having the condition. 

That is heartbreaking but true because the disease is what it is, particularly for MEN1, it's also very unpredictable in terms of what will affect you and you can't look at your family members and use that as a guide. And people find that very difficult and 

living with uncertainty is one of the hardest things. Explaining uncertainty is one of the hardest things as a clinician, 

and that's nowhere near as hard as living with it. So some of the unhappiness of course, comes around that. That's I think probably, when they look at it dispassionately, most people as patients can differentiate that from, I don't like my doctor, or I don't like my hospital. Certainly the way we operate it, it's as they say, you can't always get what you want, but you can get what you need. I can't remember if that was the Rolling Stones or but for example, we won't do internal referrals from one clinician to another within our service just because the patient didn't like us. But we are very happy to do a referral to another center and that's fine. Not everybody has the same approach to stuff. I would like to think as clinicians, we are flexible and we are thinking, and we are listening people and we're adaptable, but some people feel they need a particular thing, and maybe we can't give it. I think in general it is the same rules as suppliers everywhere else, which is you tend to find that it's not always the people with the greatest need who get what they want. It's the people with the loudest voice and the people who are the most vocal about their dissatisfaction effect change quicker. And I'm not for a moment suggesting that, I think that's a brilliant way forward. But it does seem to be the case. So I suppose what my message is if you are diffident and quiet, but in some way dissatisfied, maybe the right thing to do is to explore the dissatisfaction with your clinician in the consultation first. Maybe we can help with what's upsetting you. Maybe we can't, but we can understand it. If the things are, I can't get an appointment and when I get an appointment it gets changed 20 times. We need to know that even if it's out of our control.

You've shared something so valuable there. It's one thing having the dissatisfaction and voicing it in a appropriate way. It's another thing being the loudest person, and we've all been in the waiting room when someone's made a scene, and I think no one really wants to be that person. It can be hard, and I think you've given some real reassurance there on the openness of clinicians to actually make it work and Okay not everyone's gonna be as open as lovely as you, but I really believe that there is actually scope for bettering the connection between practitioner and patient in so many instances, and definitely in mine.

And maybe my patients don't all think I'm open and lovely, because different people need different things maybe. Anyone, if you are listening and you don't think I'm open and lovely. That's okay. That's okay. You can tell me. 

Well, Marilyn, I certainly think you are and you are so kind for having come on and very generously shared your wisdom with us. I know that you don't have a huge amount of free time by any means, so that means a lot that you've come on and definitely I've taken away a great deal. And I really hope that anyone who's listening back is able to glean some fantastic information from this as well. So thank you. 

No, pleasure.  Let me know if you get any feedback that I need to know, Lizzie. 

Of course I will.

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