00:03 Hello everyone and welcome to SRNA.

00:06 Ask the Expert podcast series today’s podcast is entitled How to get the most out of your appointments Physician and patient perspectives with Dr. Greenberg and Kristin Smith. My name is Krissy Dilger and I will be moderating this podcast.

00:23 SRNA is a nonprofit focused on support education and research of rare neuro immune disorders. You can learn more about us on our website at myelitis dot org. This podcast is being recorded and will be made available on SRNA website for download via iTunes. During the call if you have any additional questions you can send a message to the chat option available with GoToWebinar. We want to thank the sponsor of this month’s podcast Alexion. Alexion is a global biopharmaceutical company focused on serving patients with severe and rare disorders through the innovation, development and commercialization of life-transforming therapeutic products. Their goal to deliver medical breakthroughs where none currently exist is driven by the knowledge that people’s lives depend on their work.

01:10 For today’s podcast, we are pleased to be joined by Dr. Benjamin Greenberg and Kristin Smith. Dr. Benjamin Greenberg received his Bachelor of Arts degree from Johns Hopkins University and his master’s degree in molecular microbiology and immunology from the Johns Hopkins School of Public Health in Baltimore Maryland.

01:30 He completed his residency in neurology at the Johns Hopkins Hospital and then joined the faculty within the division of neuro neuroimmunology in January of 2009. He was recruited to the faculty at the University of Texas Southwestern Medical Center. He was named deputy director of the Multiple Sclerosis program and directed director of the new Transverse Myelitis and Neuromyelitis Optica program. Dr. Greenberg is recognized internationally as an expert in rare autoimmune disorders of the central nervous system. His research interests are in both the diagnosis and treatment of transverse myelitis, neuromyelitis optica, encephalitis, multiples sclerosis and infections of the nervous system. He currently serves as the Director of the Neurosciences Clinical Research Center and is a Cain Denius Foundation Scholar.

02:24 Kristin Smith began losing sensation in both legs on December 20th, 2012. And in a matter of a few hours she was paralyzed from the chest down. Three months after Kristin lost the ability to walk she was diagnosed with transverse myelitis. Still requiring the use of her wheelchair. She was determined not to give up her dreams. Kristin has since completed her master’s and Ph.D. in atmospheric science at the University of Maryland and now works at the National Aeronautics and Space Administration in Florida. Welcome and thank you both for joining us today.

02:59 I’m glad to be here. Yeah.

03:01 So you so I’m for this podcast if you two just wanted to go over some tips for success for an appointment and some kind of elaborate on that? Kristin, do you want to begin? give your thoughts.

03:23 Sure. I can just give a little bit based on my own experience more so in the last five years since I’ve had TM and my visits with doctors, various doctors’ appointments, some of those things that I’ve found to be extremely helpful for myself is just that try to be a little more organized and keep a list of any kind of medical things that are bothering me whether the pain I’m experiencing or maybe I’ve had to see a different physician for something unrelated to the transverse myelitis. And just to keep a list of those things so you don’t have to be thinking on the spot while visiting my neurologist talking about my transverse myelitis so I tend to keep a running list of things like that that are affecting me and I try to keep a list of any other kind of questions I might have for my physician whether my neurologist primary care, etc. things that are unrelated to the transverse myelitis whether it maybe some physical therapy that I’m getting or should be getting or any kind of amends or supplement anything along those lines that are questions that are bugging me in the back of my head that I’d really like to have answers on.

04:53 One of the other things I find extremely helpful for me when I visit my physician is to either bring a family member with me or to make sure that I bring paper and pen to write down a note because I often find that I’m so deep in conversation and focus on the discussion that you know five ten minutes later an hour later I don’t remember everything that we discussed. So, it’s helpful having either another person there with you or just to jot down some notes and then the other big thing I have to say was having a successful appointment is if you’re confused.

05:41 Don’t be shy about asking questions. And that’s something that I’ve had to learn slowly over time because they don’t necessarily want the physician to think that I didn’t understand what he was talking about and feel silly but in retrospect you know don’t be afraid to speak up. They’re there for you. So, feel free to ask them whatever help put your mind at ease and to clarify any question that you may have.

06:17 Now go ahead.

06:20 So I was going to say those are all spectacular points and I agree with all of them the being organized and having another set of ears in the room even beyond taking notes. It’s amazing how many times multiple people will hear the same conversation and come away with slightly different versions of the same conversation and that is usually a sign of on the presentation side maybe people weren’t being as clear and so having another set of ears in the room is incredibly helpful for the aftermath from the visit and really understanding. I would as a backdrop just put out a couple statements that are partly assumptions and partly fact that really set the stage for the challenges people have in the health care system today even when you’re just behind closed doors with a health care provider. So.

07:25 So the first assumption that I’m going to put out is that almost always the individuals who have gone into the profession of providing health care whether it be a medical doctor or a physician assistant or nurse practitioner nurse that in general we got here because we want to help people. We are they are rare individuals who you know we’re getting into a profession to build an empire or make money or start a business or all sorts of things. Sure. But far and away people chose these professions because we really want to be of service to our neighbors and to everybody in the community and people who need our help them.

08:15 And so from a starting point at some point to your clinician picked this profession for altruistic or good reasons. The second aspect which erodes our ability to do that perfectly is time far in a way it was in my experience the biggest predictor of actual success in a clinical encounter dealing with an issue and with perceived success how people will rate the quality of the encounter is very much driven by the amount of time that is spent in that encounter. If I have four hours to spend with one person I can delve into things that are very important and in-depth and not only leave with good feelings about what we accomplish but actually coming up with good plans that are well-executed well understood and all questions are answered. The challenge is in today’s health care world the amount of time we can spend per patient continues to go down.

09:39 So when I did my training in a academic neurology office we were allotted on our schedule. 90 minutes to spend with new patients 45 minutes to spent with a follow up. Fast forward to today things nationwide have moved to 60 minutes and 30 minutes in a lot of academic centers. In some it’s 40 minutes and 20 minutes and in others it’s even 30 minutes and 15 minutes. So, in a follow up visit with an individual whether it’s transverse myelitis or Neuromyelitis Optica or any condition Parkinson’s or stroke. Imagine trying to get everything that needs to get done in under 15 minutes and that is the reality of the health care system as it’s currently designed so that the challenge for us are the clinicians and patients and families is how do we get 30 to 60 minutes worth of meaningful conversation and exchange done in 15 minutes.

10:50 And just to some extent it’s like putting a round peg in a square hole. the deck is stacked against us when we walk into the room. So, this is where the notion of organization comes in and recognizing that the moment you enter the room there are forces at play that may interfere with your ability to get all the information you want out of that visit. And I’m happy for us to talk about and we will what those strategies are. But I thought it would be worthwhile just to set the stage of those are at a baseline even with the most well-intentioned intelligent well versed clinician in the world you are going to run up against the aspect of time and it’s something that I think most people have been perceiving over the last decade. But the amount of time being spent with you in clinics is noticeably declining.

11:55 Thanks. Thanks for that. Clarifying the depressing statement.

12:02 Yeah well, I think that that is a conversation right now that a lot of people are having because it’s a real problem. But thanks for clarifying. So, what. So, I guess that leads us into one of our questions what if you aren’t getting the feedback time care that you think you deserve from a physician like what would you recommend somebody do.

12:26 So there are lots of different versions and Kristin and I’m very curious to hear kind of what your experiences have been over the over the years but the part of analyzing the unfulfilling encounter is to try and understand why was it unfulfilling. And there are lots of reasons it could have been unfulfilling. It can be unfulfilling for time reasons. There just wasn’t enough time spent. It can be unfulfilling for personality reasons. Sometimes patients and their clinicians just don’t gel from an approach perspective. And it can be unfulfilling from a perceived knowledge gap situation that the clinician just doesn’t have the tools right to care. And then finally it can be unfulfilling at least in my estimation from a sense of a lack of true investment on the part of the healthcare provider either they’re not listening or they’re not interested or both in what’s going on and people will leave a room feeling as though they haven’t been heard.

13:30 And I hear that quite a bit from my side of the table Kristin and I don’t know if this rings true with either of any of your experiences or have you talked to other patients their experiences.

13:44 Yeah, I’ve personally I’ve seen both sides. The more negative side that I’ve seen in my experience with one physician was from the moment he came into the room until the time you left he was just buried in his laptop like taking notes didn’t really interact with me that much at all. And then asking the question here and there and I really didn’t feel like I was getting too much out of the appointment and was a little more discouraged and was wondering why I was even there and what the point was of even trying for a follow up visit and what I actually found over time is that if I came with my list of questions it suddenly drew him out of his computer and it became more of an interaction between the two of us. So, while it was upsetting that it took that long for me to see that change.

14:56 It was nice to see that. OK. You know there was something that maybe I could do to try to change the interaction a little so in the end this more negative experience turned into more of a positive one. Once I figured out what it was that I needed to kind of change to draw him away from the computer and to interact and look at me. So, that was one side and then the other side I found that in those instances where I don’t feel like I’m getting necessarily the care that I deserve from a particular physician is that I can lean back on my other physicians like a primary care or my neurologist or a little more familiar with what I’m going through with the transverse myelitis and understands maybe the urgency that I need to see somebody in specialized field.

16:01 And then they can give me a recommendation for somebody else that I might be able to see. So, you I I’ve seen both sides of the table and I see where I can kind of make the changes that I need to make sure that I’m getting the care that that I deserve.

16:25 And so you know the situation you describe in terms of a clinician buried in a computer screen is a pretty common one these days I’ll ask not to put you on the spot. Do you know or have a suspicion as to why clinicians are buried into the into the laptops? Has that ever been communicated. We haven’t all of a sudden recruited a lot of antisocial personalities to medicine. It’s not the way the phenotype. Again, it’s a systematic event. We are now required in order to bill insurance from a compliance perspective. There is a long list of things that have to be documented in an electronic system in a specific way in order for insurance to kick out that billing. And there’s no time to do it except in the room with you. And so, a lot of clinicians or at least the way most practices are set up so a lot of clinicians have been forced to bring the computer into the room.

17:35 Some people bring scribes into the room to do this but somehow in real time or the moment they leave the room with you. Certain things have to be recorded. And so, it creates and it’s again it’s all an aspect of time. If instead of seeing 20 patients in a day. We went down to 10 then there would be time in between each patient to document what we needed to do and we could sit across the table from you with no computer nothing and actually have a human interaction in any given conversation. But the infrastructure is being created to dramatically change the way that interaction occurs. And what you did drawing your clinician back to being humanistic and having that eye contact and an interaction and thoughtfulness is extremely important.

18:31 And your strategy of using a list is a very good one. I will even add to that and make some suggestions for everyone listening of different strategies that can be adopted to break that cycle of a lack of interaction. And so, the use of a list is a good one. And in addition to that prioritizing. So, if we go back to the notion that there’s a limited amount of time you may come in with issues related to work issues related to pain bladder function walking issues needs for documentation for FMLA. I mean the list can go on and on and on. And the clock is ticking. So to say as people get in so whenever going having that that thought process before you show up of what’s going on in your life what would you like to address and then rank ordering them and acknowledging at the outset of a visit I find it to be one of the most helpful things patients can do in this situation is when they sit down making a statement about the fact of I’m cognizant of the fact we have limited time.

19:59 It’s a very powerful statement because it does two things. Number one is it shows a recognition of an external force that’s going to dictate care. you are basically forgiving your practitioner ahead of time for the fact that they’re not going to spend two hours with you that you just you recognize the reality of things practitioners often will then take a step back and realize you know that’s not the important thing here. The important thing is to do care and most practitioners say listen we’re going to take the time we need and you can follow it saying well I came prepared with a list and I have my priorities.

20:38 Can I start with my top priority. Those two sentences the recognition of a lack of time and then the stating of what your priority is. To your point. Kristin the list I find to be very powerful ways to draw clinicians out of their bubble and back to what they meant to do what they what they originally intended when they put in their medical school application all those years ago, to do and that was to be of service. And those are some of the language strategies that can be used to engage clinicians and I’ll put one caveat in. And Kristin I don’t know if this has ever happened to you but all have some patients come with their list and they’ve set a priority.

21:26 I’ll give an example they mean them in that order. My priority is fatigue. I’m very tired and the number two on their list may be a bladder issue and the number three on their list maybe they are. They’re walking. And when they tell me they’re fatigued I may start to ask questions and discover that it’s actually getting up at night multiple times to go to the bathroom. And the fact that it takes ten times as much energy to take every step I may discover that the number two and three on their list is driving their fatigue. And I say listen I know your priorities are fatigue but I’m going to focus on your bladder because if I can get you sleeping through the night you’re going to be less fatigued. And so, as you come with your priority list you have to be prepared that after taking a history your clinician may focus somewhere else because there are intertwined and it becomes a give or take in a conversation as to why and Kristin and I don’t know if you’ve ever had the experience of coming with a list and your clinicians saying well listen we’re going to focus on number two or number three or whatever the case may be.

22:29 But usually there’s a rhyme and reason to it.

22:33 Yeah.

22:39 Kristin are having trouble hearing you. I don’t know if you can get into better cell reception.

22:49 Can you hear me. Yes. All right terrific. So yeah, I found that the list definitely helps to drive the conversation with my physicians.

23:02 And what we focus on and it’s just been very helpful at least for me in identifying with the main topic is that that we focus on and where we go from there. And then it helps beforehand to just deciding what topics are more relevant to say my neurologist versus the primary care physician. So, you’re not wasting more of that precious time that you have with one physician focusing on topics that you know could be addressed by somebody else. So, if I found to be helpful.

23:53 Yeah, I know that that is a very good strategy.

23:57 And when you are involved with multiple clinicians it is very important to define roles on the team. So technically you’re the quarterback. But if we take you out of the equation amongst your various physician somebody needs to be in the lead sometimes it’s a primary care physician.

24:23 Sometimes it’s a neurologist sometimes it’s a physiatrist Sometimes it’s an Obi Jinn it actually the credentials don’t matter but somebody has to be tasked with keeping track of all the different recommendations being made and the treatment plans to be on the lookout for things that don’t make sense when combined. And it’s important to articulate to your clinician and the best example is pain.

24:55 You see your fill in the blank. A primary care physician neurologist or physiatrist. And one of your issues is pain and they make a prescription. It is important to state. Are you going to be my primary for managing this as we make changes to this plan? Am I doing this with you. And assuming they say yes you do not want any other practitioner changing that regiment.

25:23 So you want to make sure that somebody has clearly committed has articulated the fact that they will be overseeing the management of whatever given issue we’re dealing with. Because often we will start a process with a patient where we assume we’re going to be making changes and if other clinicians start changing things we never get to follow through with our full plan. And so, it’s helpful to have the conversation of who’s going to be calling the ball relative to each issue.

26:00 OK. Now go ahead.

26:07 Well I was just going to say the other aspect Kristin of what you were describing was you were able to draw the clinician out of their computer screen. What would you have done if you couldn’t?

26:22 What if after your list, they were still very myopically just focused on the screen when you came in I think for me.

26:32 And I don’t know if this is a more drastic approach. But if it had been several follow up appointments were getting the same response or same behavior that I would probably investigate another physician in that area that I might be able to go see instead and to see if there was somebody else that I might be able to mesh with a little bit better. Other than that, I’m not really sure if I would be brave enough to actually say something to the physician about how I might be expecting more from the appointment but felt like I wasn’t getting it.

27:20 So yes.

27:24 Yes. So. So, let’s kind of go through you know every day. Lots of people are nervous about criticizing their physicians to their physician’s face. It’s a very intimidating thing to do. It’s an intimidating thing to criticize anybody to you know to walk up and say listen you know listen I think you’re doing a bad job.

27:52 Let me tell you why. That’s just a hard thing to do in general. I think for a variety of reasons it seems even harder when it’s your health care provider that you’re giving feedback to. And at its core is just human nature.

28:10 Nobody likes receiving criticism or feedback. None of us do.

28:16 You know we don’t like hearing it from parents or significant others or children or customers or colleagues. But there’s something even more intimate and personal in the healthcare setting.

28:32 So part of this is going through how can feedback be given in such a way that it does not invoke defensiveness or anger.

28:43 The goal of feedback is to get somebody to be introspective and not defensive. That’s the entire goal. And often individuals who want to get feedback whether it’s to their physician or to their mechanic it comes across with anger because often the situations that lead to a need for getting feedback are serious and personal and infuriating or upsetting.

29:20 And so people will emotionally give the feedback with a tinge of anger. And people don’t want to do that to their doctors.

29:29 So one of the things I encourage people to do when approaching physicians or health care providers that they want to get feedback too but are afraid too is to use one of a variety of techniques for dis arming the individual and making them not defensive. So, one of the classic ones that gets taught is the sandwich technique the you start you start off with a a sentence of positive reinforcement or appreciation for something done well. Dr. Greenberg I really appreciate you know the time you take when listening to my issues I know things aren’t easy.

30:16 I know there are a lot of pressures to get through but you know you don’t just come in and spend 30 second seconds you’re sitting here and listening I appreciate it. And then you transition to the criticism. I feel like either I’m not doing a great job of expressing what my concerns are or there are other reasons that are interfering with our communication. I’m not sure what they are but I don’t feel like it’s getting through. I think we’re on two different wavelengths and you end with something positive which is listen I’m really committed. I want us to work out. I value your opinion and the training you’ve had. Can you give me some advice on better ways to express it? which is very different than coming in and saying you’re not hearing me. I’m going to find another practice is finding the language to draw people in to take a breath and to be introspective and to say geez my patient feels as though they’re not being heard.

31:15 That is the last thing I ever want to happen. And let’s constructively go through ways to fix it. So, trying to find ways to give that feedback in such a way that it doesn’t make people defensive in general if you take physicians as a group of individuals in society there’s a fair amount of us that have egos and you know we can you know definitely have some diva type qualities.

31:53 How we go about things. And so, the sandwich technique tends to work because there is a little bit of ego padding that goes on as you’re giving the feedback and it’s. I think frankly again if it’s your physician or your significant other how you give feedback is critically important too is that feedback going to be internalized and successfully changed the situation. The analogy I use and Kristin and I don’t know if you think it’s a fair one but. But the algae I use for the doctor patient relationship is it’s like a baseball game where the physicians the batter and the patient is the pitcher. But in this baseball game you’re on the same team. You’re you are pitching to your teammate and so you want me to get a homerun and I want to get a homerun in. So how you serve things up if you’re giving the curveballs and fastballs or you’re yelling at me as you throw the ball the likelihood of me hitting a homerun is significantly lower.

32:57 So you want to be giving the positive reinforcement which is really it should be the other way around. But you want to be giving you the positive reinforcement and throwing nice slow straight balls so I can hit a homerun every time because then we both win. 33:14 And I agree that that technique hadn’t necessarily thought of it in that way.

33:21 But that is definitely a good idea and a good approach because that for me just in my experience mainly with the transverse myelitis It’s just intimidating because for me it feels like you have so much on your plate thinking about your health your future making sure you get the proper care and attention. But you know just having a good working relationship with the physician because the last thing you want to do is burn some kind of bridges with that physician. So, I definitely like that sandwich approach and I would use that in the future.

34:06 Yeah if everyone wants to practice you can always practice on you know a significant other or you know your children or something where your parents and see how it works. It’s amazing it before giving feedback in any situation. It’s always useful to remember what’s the goal of the feedback.

34:28 Sometimes you get your you’re already leaving and you’re giving feedback. So, they’ll be different with the next person that is sometimes rarely the sometimes effective at changing practice patterns.

34:43 If people are already gone and in their anger or frustration or saying well I’m leaving and let me tell you why you’re really not going to influence dramatic change. If, however your goal is to change the practice pattern relative to you and if you think about that before you give the feedback it really changes the feedback because you want to set people up for being for listening and for really hearing them.

35:07 A couple of other things to consider just strategically and Kristin and I don’t know if you’ve ever witnessed this but time of day of the appointment can sometimes make a difference. And Kristin have you ever experienced or can you think of that even subtle ways that it’s been different seeing somebody in the first appointment of the day the middle of the day the last appointment of the day.

35:30 Has that ever been a pattern you’ve witnessed? for me personally no. I mean for the most part I’ve had I’ve been fortunate to have really good relationships with my physicians. And at that time of day has varied for all of them and I haven’t seen really any difference for myself.

35:54 Yes. So, one of the things that comes up and it’s worth it if you’re ever in a situation if anyone’s ever in a situation where they feel like they’re not getting enough time for the complexity of issues it is fair to ask the clinician to say listen I you know I’m anxious about this. I feel like I’m not making the ground I want to get. I would like I and I know your time is valuable and I know there are a lot of people to see. I have been told in the past that sometimes it’s easier to spend a little more time on something if I were your first or last patient of the day and ask you about is there any would you advise. Next time maybe I pick your last spot of the day because I feel like there’s more to go through and some clinicians will probably say yes absolutely.

36:44 Next time you come be my last patient and we can sit here longer and have a more detailed conversation some other strategy in terms of time is to ask and you always preface it with I know there are a lot of people who need to see you. You’re very busy. I really appreciate your time. Based on what we were able to get through today I feel like I would benefit from at least one time booking a longer appointment. Is it OK the next time for me to book two spots on your appointment template versus one so we can have a little more time because I really want to hear more of your thoughts about a variety of things. Is that possible. That’s another strategy. And then a third strategy is to say listen I know we’re only able to get through

37:32 The number one on my priority list. Is it OK to book multiple follow ups over the next few months and then spaced them out versus not seeing you again for three to six months? So, those are multiple options to try and get more time with the clinicians. And one of the things imbedded in each of those and should be verbalized in each of those is the plain fact the reason you’re doing it is you want the help you want the insight and you want them to take. I wouldn’t say this but what you want is them to take a breath and think about you and to think about the challenges and to think about what they can offer to lessen some of those challenges. And if the clinicians have their mind on the computer that might go on billing or the fact that things are already an hour behind or whatever the case maybe it’s harder for them to do what they want to do and what they were trained to do which is to think I’m not a surgeon I’m not going in to surgically repair spinal cord.

38:38 I’m a medical doctor who the only way I’m of benefit to you is if I use my head. And that is directly related to the time we spent. And so, you definitely want to engage people and get them to use that time. And so, Kristen to your point you said you know if you weren’t able to enact the changes in behavior that were important to you you’d seek.

39:01 Care elsewhere. It’s a very legit. At some point that is what people have to do if they if they cannot effectively change behavior to a way that’s meaningful then they have to consider seeking generals or in for some of our listeners.

39:22 That becomes a challenge based on geography and limited access to specialists. And so one of the things that comes up is finding any practitioner locally who’s going to be your quarterback. And then if you have to travel to a specialty center but then do the follow up with your primary and enacts plans that that is an option. Fine. Finding the person who’s willing to invest time thinking and doing is more important than whether or not they were formally trained in transverse myelitis especially it and so Kristin if you had to rate what the quality was amongst all your practitioners that you think impacts your satisfaction with them the most what are the things that you’re looking for the most.

40:27 The quality of my attention.

40:29 Yeah. And just the yeah, the qualities whether it’s they successfully handle my problems accessibility.

40:42 Time what is it that would be your priority.

40:47 The artificial way this was asked in movies all the time is would you rather have a insightful listening engaged clinician who is only marginally successful at alleviating issues or a cold completely uninterested clinician.

41:09 But they have the answer to your issues.

41:12 That’s the artificial scenario that gets set up. But it gives you a sense of kind of what is it that we’re all looking for.

41:21 Yes. For me it’s my ability to get a hold of the physician.

41:28 It’s so the accessibility I guess and I think we’re having a little trouble hearing.

41:41 You know I don’t know if you can I don’t know.

41:55 Now if we can talk about some other questions we’ve gotten we’ve gotten. Yeah absolutely yeah. So, one of the questions we just got is about having a new care provider.

42:15 So if you have your old history how would you go about presenting I guess your history to a new care provider.

42:24 Yeah that’s a great question.

42:26 So in a in a new patient visit especially if you’ve had a long history run the diagnosis and subsequent management it can be difficult to efficiently go through things bringing a written history can be helpful.

42:49 The trick is knowing what to put in that up front and so that the way I encourage people to think about it is you want to have the written history and the Cliff’s Notes version. Some clinicians prefer the full version some prefer the Cliff Notes and having it written out is extremely helpful. Now in the cliff notes version part of it is trying to read your clinicians mind in terms of what they’re looking for which is very hard to do but in general what they’re looking for is when a diagnosis occurred what testing was done what treatments were given. Even back at the beginning and then milestones over time if we’re talking about years of recovery or issues. So, we’re talking about walking it would say when I was hospitalized I was unable to walk by such a point in time I was using a walker or a cane and then I was walking with an orthotic whatever the case may be.

43:50 And putting it out in that context can be very helpful for efficiently going through things in terms of the symptomatic side anything you are seeking ongoing care for. It is useful to just have a list of what’s been tried. Did it work or not and if not why was it discontinued? Well it was. So, for example if we use pain again as an example if neuropathic pain has been an ongoing issue and you’re transitioning to a new clinician it is extremely helpful to list what medicines or interventions have been try to treat the pain when they were tried the maximum dose used and why the medicine was discontinued. Did it not work or were there side effects or were is your insurance not going to pay for it anymore?

44:48 So just the table that summarizes those things is an extremely efficient way and your clinician will love you to be able to go. OK so you try these three and they didn’t work but this when you stop for side effects. And this one you only got up to half dose we can we can very efficiently move through and you can use that pain you can use that for bladder, any of those ongoing issues that summary of the diagnosis and that summary of ongoing care is if that’s written down is extremely helpful. And when you first sit down with the clinician the new clinician you can say I’m happy to walk you through my history my concerns I have it written down in case in case you want it is very helpful. And then when you go to that visit having in reserve.

45:37 Tucked away in your bag any documents that may be needed. So, in general one of the top things that comes up in our clinic is we want to see actual MRIs not just reports. So, I encourage everybody to keep copies of their MRI on CD for any new clinicians who may want them just in case it comes up a list of all of your current clinicians with fax numbers and addresses in case they want to send notes for communication. So, come prepared to hand all of that. But start by asking. I’m happy to walk you through my history I have it written tell me what’s best for you. I’m going through it.

46:21 But you also need to come with that priority list and in a new patient appointment. It can take time to go through both of those things. So, you definitely want to know of any active issues what’s your top priority to get addressed in that visit.

46:43 Thank you so much that really helpful. Kristin, can you can you hear us okay.

46:49 Yeah. Can you now great.

46:54 Did you have anything to add.

46:56 The question was about providing like a history to a new care provider one if you if you switch to Dr. Greenberg covered a lot but I wasn’t sure if you want to add anything.

47:11 No I don’t think Dr. Greenberg covered everything. I would have had in mind again just going back to having your list of things in your pocket to hand off to new physician if you needed it.

47:34 That’s great. Thank you. So, we have another question from the community. If you would like to share your thoughts.

47:42 So the question was if there was any clinical or current information regarding transverse myelitis that practitioners can access or the patient can obtain. And how would you go about sharing this information with your doctor. And just as something from the Transverse Myelitis Association we do have a resource library on our website myelitis dot org that has a lot of medical and clinical information that we recommend sharing with doctors but I’d like to hear your thoughts on that?

47:42 I can jump in on that question Yes.

48:29 Typically what I found in my appointments that are not with my neurologist if they’re not familiar with transverse myelitis is I give them a little background and then I get one of two reactions from them. One is they want to know more and they ask more probing questions about it and where they can learn more about this particular disease. And normally I just direct them to SRNA web site and to any of SRNA podcast and 101 podcast that was done. A few years back.

49:09 That might give them more information. And then I have other doctors that you may already know some about it and they either will or won’t ask for information.

49:27 But for me personally as a patient I just direct the physicians to SRNA website I’m not sure what else there is out there that you Dr. Greenberg might suggest to pass along looks like Dr. Greenberg my work might be having some.

49:57 I’m sorry. I didn’t unmute myself sorry. I didn’t want to be background noise so I was saying that SRNA Web site is actually a great place both for patients and clinicians to go to because it’s synthesized and reviewed material. CHRIS And have you ever had a situation where you either are attempting to or providing information to a clinician and it’s a awkward exchange for lack of a better term meaning either they have a look or a comment and it feels as though they’re not appreciating getting educational materials from their patient because I’ve heard this scenario described to me by some families that I’ve only had this experience once where I was trying to give a little more background on TM because it’s so hard as the patient to know how much the physician that you’re talking with that isn’t your neurologist doesn’t know because it’s so rare.

51:03 So I kind of thought are tentative with giving like a little overview about TM and then I kind of see their reaction on OK I can delve in a little more always being a little skeptical about whether or not they say know as much as they might be leaning on. So, in one experience that I did have even though at the end of the appointment I wasn’t convinced that that physician truly understood how TM affects me personally. I make sure to follow up. You had mentioned Dr. Greenberg before having that one physician that kind of is the overseer for your kind of go to or primary. I mean sure that I got in contact with that particular physician who for me tends to be my neurologist to fill them in on that particular medical appointment was about. And what that doctor was recommending.

52:14 And they didn’t want it to any outcomes from that appointment and with that physician was directing me to do. I just felt it was more important for my neurologist to be involved in that so it’s kind of a tricky situation that I found kind of more so for some of your newer physicians. The first time you see them figuring out how much they know when and how much to provide them without, I don’t want to say making them upset but, without stepping on their toes, I guess.

52:55 Yeah and I think what you’re picking up on Kristen is that it goes back to ego and I don’t mean this in a harsh way either. I mean it in a very human way whether it’s admitted or not. When it when it comes to the medical side of things physicians like to feel as though they are in command of situations some of the hardest words for physicians to say are the words I don’t know. And in theory what we’re supposed to say is I don’t know but I will find out. That’s what our job technically is. But that isn’t always the case. And so, I think if you’re trying to lead your clinician to access resources.

53:40 There are lots of ways to do it.

53:43 So one is exactly how you did Chris and in terms of directly having that conversation at some point using a quarterback as well. The other way is to leverage SRNA as an asset. And the way I do it is SRNA keeps up with things and a map of clinicians that are interested in the care of patients with these rare autoimmune disorders. And sometimes I use as the caveat of saying listen I’m a member of this patient advocacy organization the Transverse Myelitis Association. They’ve got this really great web site. It’s got a patient portal it’s got stuff for clinicians and they’re asking us about clinicians we have in the community who we like who we’re engaged with. And you’ve been great and I’ve always valued our relationship and I appreciate you taking time to talk to me. I’m not sure if you’d ever be interested in being listed on their site but you should check it out.

54:48 Get getting them get clinicians to the site in a variety of ways. The other option is to say hey I’ve been listening to these podcasts around rare diseases. And there are several clinicians in the country who make themselves available to other doctors with questions. We’ve been trying to do with my specificity and I appreciate everything you’ve done. We’re talking about possibly some different approaches. And they’ve said if you reach out through SRNA or whatever they are they’re happy to help out.

55:23 Would you mind getting them to see if there are any approaches that you think would be useful. And so, you notice the twist to the language I’m putting in. You’re not asking them to get a console from Dr. Greenberg. You’re asking them to be your agent to decide. Dr. Greenberg’s full of crap or hey I like that idea. Let’s give it a try.

55:48 And that is again a disarming way to get your clinicians to engage because you’re putting your trust and your faith in them. They’re the ones that know you.

55:59 It’s not that you’re putting your trust or faith in me but you’re trying to get them to pair up with me or Carlos Pardo or Allen DeSena or any of the specialists around the country you do this. And it’s about how do you get him to take that first leap. So, the more I find that people can put it into the context of valuing that relationship the more often clinicians will follow through with accessing the information.

56:34 And I will I will say that for SRNA we ask clinicians their permission before posting them. So. So, you can you can tell your clinicians they would never post without your permission. I’d love for you to reach out because whenever a clinician reaches out we also besides making sure that we make sure they’re equipped with all of our resources OK.

57:03 I will thank you both so much. We’re just about out of time.

57:08 I just wanted to give a reminder to all of our listeners that this podcast was recorded and will be posted on SRNA website. So, thank you both so much. I think this is really great and gave us a lot of information.

57:23 Thanks so much thank you very much.

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