Ep. 195: Functional Neurological Disorder Across Europe: Bridging Gaps in Neurology Training and Clinical Practice

00:00:00: Welcome to EANcast, your weekly source for education research and updates from the European Academy of Neurology.

00:00:14: Hello everyone!

00:00:15: And welcome to the EAN Cast Weekly neurologic podcast.

00:00:19: my name is Veronica Cabrera.

00:00:20: I'm a consultant neurologist and clinical researcher at San Juan University Hospital in Porto Portugal.

00:00:26: This month on the ANcast, we are focusing on functional neurological disorders.

00:00:31: And particularly in today's episode will be discussing education and training at FND across Europe where we are with gaps remain.

00:00:38: how might move forward?

00:00:40: I'm delighted to join by two internationally recognized experts.

00:00:44: show you know them.

00:00:45: Professor Mark Edwards is a professor of neurology and interface disorders, and a consultant neurologist at King's College Hospital in London.

00:00:54: And also Professor Stone who he is a consultant neurologist an honorary professor of Neurology in Edinburgh Scotland.

00:01:00: welcome and thank you for joining us today.

00:01:04: Thank You very much.

00:01:04: pleasure to be here!

00:01:08: So maybe we could start by, I would like our listeners to kind of understand why we decided to do a podcast on this topic.

00:01:16: And i'll start by setting the scene for our listeners By looking at where are currently in terms FND education across Europe and the heterogeneities training And particularly this episode was inspired by a study published by Dr.

00:01:35: Teresa Seranova from Prague, Theresa led the study that tried to look at regional differences in FND education and training across Europe... ...and the study gathered data from twenty-five countries!

00:01:47: It's impressed that only five of these countries included FND as part their neurology curriculum.

00:01:54: So, John you were actually both the senior authors of this paper.

00:01:58: but I'll start by asking John would you like to comment on these papers?

00:02:02: John and this finding briefly summarized what do you found in his study.

00:02:08: Yeah so i guess we were inspired by the apparent disparity between how common FND is an all-of-all practices as neurologists... But how rarely it seemed to appear in training.

00:02:24: I was excited a few years ago to see that FND is actually part of the EAN recommended curriculum for neurology trainees.

00:02:33: But talking with colleagues around Europe, it didn't seem like they're necessarily translated into what's happening on the ground.

00:02:39: so we wanted to see as best we could what is happening in the ground and as you said... We managed get some kind information from twenty five countries And only in five of those was FND, a mandatory part of neurological training.

00:02:58: We contrasted that with MS which is uniformly in all training programs.

00:03:08: so it only appeared three final neurology examinations we could see information about and We could only, and only seventeen of those countries had any neurologists with an interest in FND.

00:03:25: But when we try to get some idea if the relative frequency of FND neurologist versus MS neurologist The ratio that we came out too was one-in-twenty so there's twenty times as many MS neurologists And it is not because MS is twenty times more common than FND.

00:03:44: So Those were some other headlines from the study.

00:03:49: And it was really just to try and get people think about their training, can we get a bit more equity in training and representation for this disorder?

00:03:58: Striking

00:04:00: isn't it!

00:04:01: I was interested particularly on that aspect you mentioned.

00:04:04: would like explain further why you selected MS as comparator because its interesting right if look at the prevalence of both conditions.

00:04:14: So but incidents of MS is is certainly supposed to be less than that of FND.

00:04:21: The prevalence may be more similar, people with MS have quite a similar condition there multiple symptoms over long-term conditions many of them.

00:04:31: so we thought it would've been an interesting comparison.

00:04:36: Yeah and what about you Mark?

00:04:39: Did any of these findings of the study surprise you at all or were already extracting this kind systematic gaps that we identify in our clinical practice as well.

00:04:50: Yeah, unfortunately it wasn't particularly surprising but I think is important to put out there and lots of us know including people who are maybe not particularly interested in FND but recognise the FND really quite common.

00:05:06: It's something which often people describe challenging or difficult And so it's recognized as a thing and a difficult, challenging thing in neurological practice.

00:05:17: So is a bit irrational that there such lack of training or preparation for people who are going to be seeing with this condition very frequently their working lives.

00:05:30: they don't get preparation.

00:05:31: support do you have?

00:05:33: I think its part on-going issue about whether this thing functioned on your disorder, the people that have it.

00:05:44: Are they really the business of a neurologist?

00:05:47: And there's I think still an ongoing tension about that and I think that underlies some of the negative attitudes and feelings that people have towards people with F&D.

00:05:57: if you've got lots of other people who should be treating why am i having to treat these people in this condition which is not my responsibility?

00:06:06: but the past number of years, there has been I think a successful and correct in my opinion push towards saying well neurologists do have really important role to play.

00:06:20: Not just in the diagnostic labelling over condition but also in terms of involvement management advocacy training as one would for any other conditions that causes neurological symptoms.

00:06:35: Yeah, so really if we try to summarize this We're really talking about one of the most common conditions that we see in neurology clinics and also when other settings emergency department And then even in the war.

00:06:49: So it's everywhere as well.

00:06:51: And John obviously led and you as well let some of the more important studies in terms of FND prevalence.

00:06:58: But despite that we still see that FND is totally underrepresented in the training programs.

00:07:06: And it's not just a thing of one or two countries, is actually very systematic.

00:07:11: so I would like us to kind do step back and try think...I know you already introduced some issues Mark but i'd also like have any thoughts about possible underlying reasons why this has persisted for so long because we've both tried push for these last twenty years.

00:07:33: So why do you think that FND is still so underrepresented in comparison to other conditions?

00:07:42: Well, shall I kick off there.

00:07:43: We've got lots of things going on here and one of the key thing's history with disorder.

00:07:51: really for over a hundred years it was considered purely psychiatric condition and responsibility of psychiatrists.

00:08:00: And almost a feeling, certainly I had this when I was training that these patients were in the wrong place and although they have neurological symptoms.

00:08:09: They're the psychiatric disorder and it's really not the business of a neurologist to be looking after them.

00:08:16: on some of us It comes back two interesting history Really?

00:08:21: Of when neurology and psychiatry diverged particularly with absent.

00:08:26: with the advent of neuro pathology i think many neurologists were tying their profession if you like to pathology.

00:08:37: so the business of a neurologist is to look for neurological pathology and there isn't one, well then that's not what we do.

00:08:45: So I think those sort ideas have been very much in play but still are i think from any people.

00:08:53: whereas what Mark was saying which obviously agree with who've got neurological symptoms, work out what they are.

00:09:04: And there might be a structural pathology but it may not be so.

00:09:07: some of I think when you put that way becomes clear about why people uncomfortable in this area and then added business to the fact because has been still is coded as psychiatric disorder creates all sorts difficulties for training access to payments for conditions, the benefits.

00:09:32: So these patients will sit in a sort of no man's land between two or at least have done historically.

00:09:41: From speaking with other neurologists as well and particularly trainees I also feel that there is sense.

00:09:47: perhaps we need better diagnostic signs and also treatments.

00:09:53: this kind of sense of diagnostic uncertainty and unclear diagnosis contributes to the lack of more formal and established training.

00:10:04: Do you think that this could be part why it has continued for so long?

00:10:12: Mark wants a comment, I'm sure but i don't know what's going on here because we look at other conditions like migraine or many forms of movement disorder are clinical diagnoses, which have similar levels of unreliability.

00:10:34: And we have to make a clinical diet.

00:10:35: so I think there's been an issue with this not being in part training and people not knowing how to diagnose it on.

00:10:42: the information hasn't been out then was when he did.

00:10:45: you better get at that.

00:10:47: but the ways we've got making diagnosis fairly well established.

00:10:52: many of them were Well known hundred years ago.

00:10:55: they kind of got forgotten.

00:10:58: But I don't think the argument that it's harder to diagnose really washes.

00:11:03: So I don't think

00:11:24: that's so much the issue.

00:11:31: The thing you were talking about before, somehow there is still this very strong... Neurology is neuropathology and thats our core business.

00:11:42: But when we think of it as wrong for most people because most are with neurological conditions might be underpinned by pathology, have significant psychological and psychiatric comorbidities.

00:11:59: And risk factors and maintaining factors.

00:12:02: so in fact the I've felt over time that the training that i've had from seeing lots of people with functional neurological disorder and interacting with other professionals like psychiatrists and psychologists and physios and so on... That's been fantastic training for managing.

00:12:19: So, with neurological conditions generally outside of functional neurology disorder.

00:12:26: I think actually this provides a really important rebalancing of that old sort of pathological approach to what neurology is so something which is more in line for all neurological condition.

00:12:43: you know near of MRI and whole gene sequences.

00:12:51: Anybody can order a scan, anybody can request few blood tests.

00:12:54: just ask check GPT give me if your blood test for this patient.

00:13:00: that bit of neurology is still fascinating great but it's.

00:13:06: there are aspects of neurologic.

00:13:08: we're talking about the stuff much harder to do

00:13:14: Absolutely, and perhaps we could now move to other findings of this study that I also found particularly interesting.

00:13:22: One of them is regional differences in terms of access to specialist services for example We haven't touched on yet reimbursement.

00:13:30: even issues like historical divide between neurology and psychiatry And all the cultural aspects that we know diverge between countries.

00:13:39: So starting with you Mark You have been in contact with three knees from all over the world.

00:13:45: You have influenced a field worldwide, I would say and you regularly contact with these people.

00:13:51: so what do you see are the major gaps in terms of training exposure?

00:13:57: And particularly for those that seek further training from

00:14:00: U.K.?

00:14:02: So i think starting it with positive things both in the UK outside...I've seen massive change as John has in general interest in functional neurotic disorder with training neurologists and other trainees being much more kind of willing to think about what this could be an important part.

00:14:23: my job or maybe even I want a kind of subspecializing.

00:14:26: So there's a lot of interest, i think that one of the things which is really chilling influence like it really keeps everything so stuck.

00:14:42: managing people with functional neurological disorder, really quite difficult.

00:14:47: And those are present in most countries to a greater or lesser extent.

00:14:52: and lots of that has to do with a lack of integration of different services around particularly neurological and psychiatric services but then also rehabilitative services both in a specialist context for us so at the community level So and also the sort of ongoing kind of fragmentation of medicine in general, so when you've got a condition which almost by its nature has symptoms across multiple systems.

00:15:23: And is usually associated with psychiatric comorbidity often associated or can be associated with psychosocial stress and difficulty then these this are the system that we work within health care really kind of show their problems and show how inadequate they are.

00:15:43: And so once you've dipped your toe into that, try to do the right thing and realize how difficult it can be... It's not surprising.

00:15:52: many people say I'm just going to do this or even worse they really tried to do it!

00:15:59: They get burned out by trying because its very hard fight against a system.

00:16:06: So i think thats something which is there across countries, you know.

00:16:13: I think the more that medical leadership can kind of promote this condition and promote its importance.

00:16:25: That's why it is so important.

00:16:27: for example the fact that EAN has a scientific committee about functional neurological disorder –the fact European guidelines for functional neurological disorder, the talks of conferences supporting local things in every country.

00:16:44: All that builds this sort-of power... This is a thing we should be doing something about and will feed through eventually it to changes in policy.

00:16:53: after.

00:16:54: Yeah, I think this is a good moment actually to pause and invite our listeners to join the panel.

00:17:00: So as Mark was saying there's new coordinating panel of DAN focused on functional neurological disorders And all of our listeners are invited to join in getting involved.

00:17:11: There're lots of activities coming out including guidelines which obviously will hopefully help guide clinical practice, not only in Europe but worldwide.

00:17:23: But John again if we step back for a little while you have been doing some work on stigma and I know that are very passionate about it.

00:17:32: We were describing how lack of education access to training might shape the interaction between clinicians and patients.

00:17:41: so In short would like talk with us that education might play a role in reducing stigma for the future?

00:17:53: Yeah, well I think it's interesting because a lot of work on stigma has focused on health professionals and how we do have historically really stigmatized this problem.

00:18:04: But the stigma is out there in society as Queever McLaughlin did from our group showed actually what one of the most stigmatizing places for people is actually work more than when they come to hospital.

00:18:24: So it's.

00:18:26: and then there are also issues that patients self-stigmatize so often will say I think this all me, i'm doing myself even if not.

00:18:36: So a lot of self blame going on.

00:18:40: These are difficult problems to overcome.

00:18:43: I don't think there's quick solutions to them, um...I think cultures- the culture of neurological practice is sort of handed down from supervisor to trainee often over a very long period.

00:18:59: if i think about my supervisor when i was training in the nineties he was at medical school in the sixties gaining attitudes for people who trained in the nineteen thirties.

00:19:10: So it doesn't take long to go right back.

00:19:14: And I don't think we can expect this change anytime soon, but what does change?

00:19:22: is leadership seeing that its okay for an FND and neurologists who do this having...I was really pleased.

00:19:40: Five National Neurological Societies had special interest groups for FND.

00:19:45: There were more specialist service than I thought there was going to be, and they are more patient organisations out here.

00:19:51: The overall picture might look grim but it would have looked much better if we'd done this ten or fifteen years ago.

00:20:00: so you can change can occur.

00:20:04: You only have to look at a condition like autism, which when I was training it was kind of horrendous thing that you would never mention and any effected in the thought of children with severe learning disability.

00:20:16: To see how that pendulum can swing unexpectedly.

00:20:20: In fact we'll be careful about this as well.

00:20:23: So i think leadership research is really important for neurologists seeing there's scientific basis treatment, diagnosis or we can support that with the laboratory.

00:20:37: There's a neuroscience and pathophysiology.

00:20:39: all of these things help to overcome that stigma I think make people interested in something which is inherently interesting as well.

00:20:49: And looking ahead, perhaps Mark.

00:20:52: Do you see any role for novel educational tools like using digital methods or AI?

00:21:02: Are you using any of those?

00:21:06: Not particularly but that might be my increasing age.

00:21:12: I think there's... That may have an even greater role in just trying to get a different message out there, not just the trains but society and general because I agree with John that yes.

00:21:28: There's problems with stigma within health professionals for sure But there is this General Societal Stigma That Is Just To Say We Don't Physical Things Or The Real Thing That Stuff You Can See On A Scan Anything You Can't See Is A Little Bit Suspect or Very Suspect And Can't Be Real.

00:21:46: And Just Try To Change That That view.

00:21:50: and that may be where, you know greater use of digital media social media would be important to get a different message out there because that messages very rife on Social Media as well.

00:22:02: And gives them really negative View with these sorts of problems too.

00:22:08: patients who might be looking up about their condition And I would extend that beyond functional neurological disorder to more broadly chronic symptoms, functional chronic symptoms persistent physical symptoms.

00:22:19: But there's a different narrative that could get out of it which is this is the real condition.

00:22:24: but actually these are things people can also recover from and can improve on.

00:22:29: some messages almost never gets out.

00:22:33: so i think maybe theres room for that kind message from a more general social media point of view.

00:22:42: Perfect, and perhaps before we finish I would like us to finish on a very practical note.

00:22:47: So iIwould invite you both first John To just provide maybe two practical steps for any department across Europe Steps that could be taken to improve education for the three needs Perhaps things you have done in the past And it can range from integrated care pathways seeking funding organizing courses.

00:23:08: What do you think are too?

00:23:10: steps that could be taken for someone looking forward to start this locally.

00:23:17: Well, thinking broader than a department if there's any trainees listening to this who want to do something practical I would go to your national society and say can we have an FND special interest group?

00:23:29: And collecting others with the same interests?

00:23:32: because very simple things like... Can you make sure there is section in the poster session of FND conditions?

00:23:45: Can you make material for patients in your language because I think that also helps clinicians feel more positive about the condition.

00:23:57: Does your local curriculum have FND, is there a training day or session on it?

00:24:03: if not can you contact your regional training director and say So those are some things I might encourage people to do.

00:24:19: As well as that, which i'll definitely agree with... ...I think another thing you could think about doing is collecting some data Some local data.

00:24:27: That's something usually possible.

00:24:29: so just do an audit.

00:24:30: How many people with functional neurotic disorder turning up in outpatient clinic or the emergency department being admitted into hospital?

00:24:37: how many patients on ITU how functional seizures have been intubated incorrectly.

00:24:43: So these sorts of things, so first or on the hypercute stroke unit to that matter as well... These are ways showing locally.

00:24:53: look it's a problem for us too.

00:24:56: there is really common and one step beyond that can be to look at their costs as well!

00:25:02: There obviously cost to individuals but they're cost-to-the-hell system And in previous studies, those costs have been demonstrated to be really high and lots of them are associated with acute care.

00:25:13: So multiple attendances, admissions, ITU stays and so on.

00:25:18: Even just looking at the last twenty people with F&D how much did that cost a system?

00:25:26: What could we've done

00:25:27: differently?".

00:25:29: I think forces maybe people higher up in the organization take notice.

00:25:35: This is really common.

00:25:36: It's very costly, we could be doing something different.

00:25:40: Yes and perhaps an important note as well it not restricting this special interest groups to neurologists only And actually join forces with a lot of health care professionals such as physiotherapist OT occupational therapy speech on language therapy.

00:25:55: So when I think its real important because without accessible treatment Its really difficult.

00:26:00: Okay, so I think we have reached our time and unfortunately this episode has come to an end.

00:26:05: Uh i would like to thank our listeners for joining our discussion.

00:26:10: uh This is been really interesting.

00:26:11: um And it's clear I hope for everyone that education in FND It's not just An academic issue or a boring topic?

00:26:20: Really has a real impact For patients and I hope we have inspired clinicians Especially those in training across Europe.

00:26:29: join FND and our panel again, to reflect more broadly on these issues.

00:26:35: And now we can really improve lives of patients with functional neurological disorders.

00:26:40: so thank you for joining us!

00:26:53: This has been EANcast Weekly Neurology.

00:26:56: Thank You For Listening.

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