Making Vestibular Visible Podcast
Vestibular Healthcare in the US vs the UK
Vestibular patients across the globe share many common experiences besides the physical symptoms of vestibular disorders. In this recorded live event, UK-based Peter Rea, MD and US-based Joel Goebel, MD join host Kathleen Stross, DPT to discuss the differences and similarities between the US and UK healthcare systems and how that impacts vestibular health. This event is sponsored by the LifeOnTheLevel support group, led by Kevin Higgs, vestibular patient.
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VeDA uses otter.ai to create machine-generated transcripts. This transcript may contain errors.
Dr. Kathleen Stoss, DPT
Hello and thank you for tuning in to another episode of making vestibular visible. This episode features the audio recording from one of feetoes video education series events. If you’d like to watch the video and see the visual materials, you can find it at vestibular dot o RG forward slash video dash education. Now on to the show Hello and welcome to the Vestibular Disorders associations making vestibular visible. I’m Dr. Kathleen Stross, a vestibular physical therapist and volunteer with Vita. Today we’re going to talk about the similarities and differences of vestibular healthcare in the United States and the United Kingdom. Today’s event is part of our Ask the Experts series engaging in roundtable discussions with renowned clinical experts who evaluate and treat people with vestibular disorders. I remind you that the views and opinions expressed here are those of the guests and myself and do not necessarily represent Vita or its board of directors. This presentation is going to be for both patients and clinicians. But we really want to focus on the information for our vestibular patients our vestibular warriors as we call them. This event is recorded both as a video event and an audio only podcast. So if you’re making if you’re interested in watching the podcast, and you can find that anywhere podcasts are streaming, if there’s something you want to see on video, you’ll be able to see that as well through all the streaming channels with vida en en vida YouTube channel. This educational event today is co sponsored by life on the level support group, based in Leicestershire, UK, led by Menieres patient Kevin Higgs, I’d like to welcome Kevin in this introductory introduction so he can share with you how he came up with the idea for this event. Welcome, Kevin. Hi, Hello, good morning. Good afternoon and good evening.
Kevin Higgs
Tell us how you came up with the idea to do this and what this this event means to you. Yeah, and for the last five years, we’ve been running a support group for anyone with bands conditions in the UK started very small numbers, we’ve now got over 275 members, which is fabulous. And a lot of the members obviously we’re based in the UK. So we’ve got we’ve got British members, but thanks to things such as zoom, and teams and video meetings like this, we’ve now got quite a few members joining us from the USA in other parts of the world. One of the things we’ve noticed is when we get talking about how to access care for balance patient’s diagnosis treatment, we often start talking about the National Health Service based in the UK. And this completely throws anyone who’s not living with and working through the NHS system. And likewise, when our American members talk about their their care system, we just don’t understand what what’s happening. And yet what five years of our support group has taught us, no matter what your diagnosis, no matter what your routine to balance condition has been, we’ve just got so much in common. And my belief is and I hope this comes through tonight, we’re going to find this so many similarities between us all, doesn’t matter where we live doesn’t even matter what language we talk if you’ve got a balanced condition, we have so much in common. I’m sure that we different terminology. I’m sure there’s different process and funding. But but we have this genuine commonality. And and what we strive to do in the UK with a group is is kind of speed up everyone’s recovery. So we can share our own experiences. Share that with people who are new to balance conditions. Get rid of that awful thing. I had many years 20 years ago. And I was classic. I thought it was the end of my world for young kids huge mortgage wife thought it was game over. I didn’t know then, but I do now now. Now know the fear I was going When through was so much bigger than the reality. But I had no one to tell me this. And the other difference 20 years ago, nobody was talking about depression, anxiety, the stress that invariably comes with living with this hidden disability is it’s just how every member who ever joins the store is so similar. No, nobody understands the the conditions are so much under the radar of everyone, everywhere, even family members struggle to understand we go through. And this is kind of what links us to vida. Vida, it must be the world’s biggest resource on balance conditions. And the approach is so positive, is it, it’s so gives people hope, when you read about other people’s stories, let’s read about how people overcome all these issues. And again, the one common thing we all have here, is reaching out in contact with each other. Just knowing we’re not alone. We’re not isolated. They and I’m sure a lot of people watching tonight will get this to when you finally meet others with a similar condition, you realize you’re not going crazy.
Dr. Kathleen Stoss, DPT
I think that’s the most important thing. And you know, a couple of years ago, when we started our life, rebalanced Chronicles, we used professional documentary filmmaker and created an inside view of the life of the vestibular patient. So if you haven’t seen those, I’d like to we’re going to provide a link for you to go see those because validating your experience is certainly one of the most important things almost before you can even handle hearing. What’s wrong with me and what are my options to for treatment is I hear you, you’re not making it up, and we understand you. So again, like rebalanced Chronicles shows people that they’re not alone, that there are people across the globe who have had similar experiences. And we’re going to focus on those today. But I thank you for bringing this opportunity to Vita that it’s useful in helping us expand our global reach. We certainly don’t have borders when it comes to experiences with vestibular problems. The borders only change the way you find your diagnosis and how your treatment might be delivered and the names of those people that are delivering the care but the patient experience is universal. And that’s that’s the important part.
Kevin Higgs
Absolutely. Lovely. I’m looking forward to this.
Dr. Kathleen Stoss, DPT
So thank you so much for joining us, Kevin. We’re going to move now to introducing our guest speakers who are professionals in their own right. Let’s get them on. First Dr. Goble and Dr. Peter ray. So beginning with Dr. Peter Reyes, a UK based neuro otologist in Leicester, UK and he runs one of the busiest balance clinics in the UK, where with his team, approximately 7000 balance patient appointments per year are managed. In addition, he’s an honorary professor of balanced medicine at DeMontfort University and honorary professor to the Department of Neuroscience at the University of Leicester. Welcome Professor Ray.
Dr. Peter Rea, MD
Thank you very much indeed. It’s great to be here this evening.
Dr. Kathleen Stoss, DPT
Great. We’re so happy to have you Dr. Joel Goble. You’ve seen before he has participated in on the expert. Welcome back, Dr. Goble. He’s the chairman of VITAS medical and scientific advisory board and professor emeritus in the Department of Otolaryngology Head and Neck Surgery at Washington University School of Medicine. He’s published over 120 peer reviewed publications, and is the past president of the American neurotology society and served as vice chairman and residency program director. Welcome Dr. Gopal. You’re muted Hold on. Let’s see.
Dr. Joel Goebel, MD
That will be Thank you.
Dr. Kathleen Stoss, DPT
Thank you. Thank you for being here. So welcome. We’re just so thrilled to have you here. And it’s such an honor and a privilege for you guys to work with us on scheduling across the time zones across the globe to get together today. We have a lot to cover. So I’m just going to jump in. And if you wanted to add anything to your introductions, feel free to do that. But Dr. Vogel and Professor Ray you two have worked together before. And that’s what makes this so nice. I’m watching your humor back and forth already. You already have a relationship. Tell me about how that developed and how you remain close colleagues, despite working in completely different healthcare systems. I’ll let you begin. Professor Ray.
Dr. Peter Rea, MD
Well, thank you. It’s mostly that my house was built in 1780 and that fessor Goebbels likes to go into the attic room which has got wonky ceilings and deep black beams. So Joel comes over and spends some time with us every year and has done so for 20 years. And it’s a wonderful relationship. And I’ve learned a huge amount from Joel, it’s been a symbiotic relationship always have been. And we learn how much we’ve got in common. But we also learn from each other because we’re doing things differently. And it all started. In fact, before I became a consultant, which was years ago, when my predecessor Jim cook went over procedure. And Joe was very much an entrepreneur setting up on first balance centers, dedicated balance centers, and all. My research with Joe brought this over the Leicester bang in the middle of England, I was hugely innovative at that time. And very sadly, my predecessor passed away very soon afterwards. And I, as a young consultant 20 years ago, was handed the reins. So it’s kind of big things take on. But over the 20 years, I’ve increased the size of the department from about two and a half 1000 appointments a year to, as you said, Kathleen, about 7000 appointments yet, and Joe comes over, not just once a year, to run the less balanced course with me, for professionals, but also to help teach with the Royal College of Surgeons in British society, otology and a lot of other organizations that we hold close to our heart, in spreading the word. And that’s the key thing here in this relationship, that Joel was the seed, we’ve grown plants, less the being one of them. And we’re scattered those seeds as well. So I now travel teaching and hopefully inspiring other people. And together we hope we’re setting up centers of excellence around the world. So I’ll let Joel give his spin on it now.
Dr. Kathleen Stoss, DPT
Well, that’s terrific. I think what I’m that our audiences that you all have been working together cooperatively, for a long time, and Vita helps to and I know plays a role in bringing the patient experience together. jolla let you add to to Professor raise comments about your relationship. Yeah,
Dr. Joel Goebel, MD
I mean, it’s started very, on assumingly, when Jim cook came over in 2000, and we were one of the centers he came to, he went to Toronto, he went out to the West Coast, he went a lot of places. And he also went to Australia. So um, he went, he looked to see how to set this up. Then he came back to Leicester, he held the first balanced course which I wasn’t at. And then he said, No, I’d like you to come on over. So I’ve been involved with it since 2001. And Peter and I have been doing it together since Jim passed since 2004. The key to doing this is education is teaching, the level of knowledge and balance medicine needs to be elevated. And the more you elevate the level of knowledge in all providers, then the patient care gets better. And that’s been my driving force to do whatever teaching I’ve done whether it’s at Washington University, around the world, and Leicester, wherever it is, did you have to try to improve the knowledge base, which then improves patient care. So that’s really what’s driven me to do this. Um, in addition to the nice room that Peter gives me up at the top of his house. I still think it’s haunted. I look out that window and I see I see the victory, I think it’s haunted.
Dr. Peter Rea, MD
So they say he can be seen some
Dr. Kathleen Stoss, DPT
professor Ray help our American audience know what it looks like for a vestibular patient to navigate their way through the UK healthcare system?
Dr. Peter Rea, MD
I think that’s a fantastic question. It’s a complex question. It’s a big question. So if you could just bear with me a few minutes, I’ll just give you an idea. So you can see the picture of what goes on over here. And some of that will resonate with others from outside the UK. So the first one, and now is most always asking family and friends and looking at the Internet. So for conditions like BPPV a lot of our patients are doing self help epi maneuvers and Brander of exercises from from the internet. And I’m sure there’s a worldwide on its own. I’m pretty nervous about because I’m nervous about people with positions isn’t as wrongly diagnosing themselves, I should say. Now, the next area that people are learning from is organizations like your fantastic organization, Kevin’s fantastic organization, and online help and support groups and online programs where the quality of material on the TV and on the radio is really improving and is a good example I did the BBC, which does have two parts to it. commissioned me to help them with a broadcast on dizziness a few months ago, and if anyone wants to listen, anyone wants to listen to it. You can just jot down and it’s BB if you Google BBC World Service, crowd science and vertigo. It’s a 35 minute program. I talk my team talk, patients talk psychologists talk. And it’s actually really kind of moving. So it’s five minutes, and it went out to a worldwide audience of 360 million people. So we’ve got global reach with this. And together, we’re trying to get the message out to everyone. So that’s the baseline of where people access code is no different here to America or anywhere else in the world. But the difference here is that your first port of call after that is your GP. And anyone listening in the UK will be saying, Yeah, but if you can see them, there is a problem at the moment, getting to see your family doctors. So the family doctors, we do teach, we do reach out to them, we try and teach them how to do it overs and so on many a small can. And I think it fair to say, struggle diagnostically. It is a challenge for them. Because it is a long consultation, you can’t do it quickly. And they in the UK traditionally have been where patients are trying to enter to other potential areas. And there’s a couple of really interesting thoughts. I’ve jotted down a few points just while we were thinking about this. And the majority of patients in the UK will then go to National Health Service, which is free at the point of care, nothing to pay whatsoever. And there are fabulous world leading centres in the UK as good as or I would claim better than a anywhere in the world where you can get access to superbly set up and resource investigation and treatment balance centers. The problem we have is there, enough of them. And in Leicester, for example. We built it up to 7000 consultants, several consultants, so it’s 7000 patients with several consultants. But we got utterly overwhelmed with referrals from all over the country that are management that we can’t do this or waiting times 18 months. So only Leicestershire patients are allowed to be seen. And this is a problem in the UK, in that it is a postcode lottery, it depends on zip codes, lottery, I suppose you call it
Dr. Kathleen Stoss, DPT
the lottery. Yeah.
Dr. Peter Rea, MD
What do you call it? Code lottery.
Dr. Kathleen Stoss, DPT
You’re saying a lottery not a necessity, not those who need it the most or wait the longest, you’re saying it’s a lottery. It’s random.
Dr. Peter Rea, MD
I ran a session at the Royal Society of medicine on this a few years ago, because some regions do not have adequate resources for this. And Sunday, Sunday. So there is an element of luck in the UK, because you can’t necessarily be referred in to other centers. And then some patients may go privately. So we have this very stark demarcation between national health service and then private. And a number of our patients will have insurance through work, which allows them to go and see whoever they want private while actually not necessarily whoever they want. Here’s another problem. If you take out private health insurance in the UK, the more expensive policies will let you come and see the person you want. But a lot of the policies now deeper and are directing you to a specific consultant who may not be an expert. So even private care isn’t ideal. So the majority of my patients I see privately now so fun, they can get access to everything pretty cheaply. So pretty quickly, actually not desperately expensively, either. So that’s a routine. But what we interested me when you raise this issue, before we spoke is I just jotted down where people might go, this is really interesting. And I’d be really interested to hear what you say caffeine and what Joel said as well, because I thought, Okay, I’m a patient now sitting in front of my GP, or in front of my computer saying, Okay, I need to see someone specialist, who I see. Now traditionally, in the UK end surgeons would see the bulk of dizzy patients and typically it will be near surgeon like me, which is one of my hairs all over the place, because I’ve just been in the operating theatre for 10 hours and just about got here on time, so great. But we’re pretty specialists and there’s only so many offers. In the UK, we have a second group called Audio vestibular physicians, if you have those in essentially, who are medical, they’re bit like antisocial if you don’t operate, so they’re very particular migraine, but it’s only a very small number 40 5060 in the UK. But then it gets interesting, because you might even see a neurologist, yes, or you might go to a syncope clinic because you’re feeling lightheaded and fainting, fainting, we might get a cardiologist or you might get a false clinic run by geriatricians because you’re a bit older and falling over. He may go to an audiologist because you don’t want to go to a doctor. You may go visit therapists who it’s easier to access for you can go to a specialist vestibular physiotherapist and on and on. It’s really confusing, isn’t it? So what we’ve set up I was part of a group who worked with the government saying We need balanced czars for each region. And we need greater, and we need a dedicated balanced clinic for every region. And this was 10 or 15 years ago and the government agreed and most things doesn’t happen.
Dr. Kathleen Stoss, DPT
You know, it’s interesting balance our because over here, we’ve had people say, don’t just talk about balance because I have vertigo, but my balance is fine. You know. So again, the you have these competing interests of some people don’t feel like the word balance addresses, they’re also opsi, or their visual difficulties that they have because of their problem. And so I guess, you know, once balanced is compensated patients still have visual issues or other vestibular symptoms that they feel like a balanced doesn’t, doesn’t describe me. That’s
Dr. Peter Rea, MD
interesting, isn’t it? The trouble then is, what do you call the center? Do you call it the vertigo, balance dizzy, or Synopsys? visual proof. I don’t know what you call it. It’s like a generic. Generic, granular
Dr. Kathleen Stoss, DPT
helps. But our goal at VITA is to make the word vestibular visible. That means making the word feeler which encompasses all of those things, all those variety of symptoms, and many diagnoses, make that Word or Word known as well, as other words, like
Dr. Peter Rea, MD
going to counseling. That’s it. But can I come in that because you make it really you make a really important comment. Because by defining a center as a vestibular center, you’re saying, we’ll only see you if you’ve got a problem with your ear, or your brain. That’s the problem. Great, my elderly patients, almost all of them will have a multi sensory balances. Stimulant may be part of it. But you know, we know from really fabulous researcher, that the white spots, you’ve got your on your MRI scan, cerebrovascular disease, the more unsteady you are, and that needs to be seen. But we also know that even vestibular physiotherapy for that will reduce your risk of falls, and then you have diabetes and your peripheral neuropathy. That ended up I think calling ourselves a vestibular center would be really easy for my life, because I only need to concentrate on that. But whenever I give a lecture on this, thank you for asking me to give a talk on balance. I’m gonna give you a talk on an entire text formats. I think anyone who offering expertise in the Dizzy patient needs to have that knowledge, because a lot of treatable diagnosis will be most of the time.
Dr. Kathleen Stoss, DPT
So I think that you know, the word vestibular encompasses both central and peripheral Vestibular Disorders and the word balance kind of brings in those multi sensory patients. So I’ve been comfortable using hear the word vestibular and balance. But I bet that that’s not even good enough still, but I think it’s something we’re working on. And I think we uniquely, we acknowledge the unique situation we’re in. This is a group of disorders that not only involve the vestibular system, but also other systems. And most of our elderly patients are multifactorial. So I think, I think that’s great. I’m gonna ask you to wrap that up about the UK. And let me get to what Dr. Goebel talk about the United States healthcare system in comparison and contrast. What else Dr. Ray besides that, I mean, triage, you talked about triage multiple people. Is there anything else you wanted to make sure you add it on your points?
Dr. Peter Rea, MD
No, no, I’m with that. I mean, I think that once you’re into the, if you’re in the right center in the UK, we have the most fabulous equipment we could have the whole range of treatments are available. And one of the great things about the UK in some real positive is that the NHS National Health Service is a huge, almost like an organism with a vast amount of data in it that we can share. And we also do share patients and we share ideas. So as specialists, we’re ever really closely and it’s a real community. So last week, I was in London at the British society of neuro otology meeting. And we had 150 specialists from the NT and neurology and what you’ve received in medicine and physiotherapy and science and audiology and so on, all coming together to share our research, but doing it in a really open manner. And I think that’s one of the great strengths of
Dr. Kathleen Stoss, DPT
Perfect. Okay, thank you for that. So Dr. Google, let’s give it over to you about how the US healthcare system differs from the UK and how this tubular patients are managed. Yeah,
Dr. Joel Goebel, MD
so I’m going to emphasize something Peter said, Good seen it not only in the UK, but around the world when I’ve taught the very, very best is the same no matter where you are. The top the top 1% of people who do any disease is the same in the US and UK. Same in Asia, same in Africa. I’ve seen the top. I’ve been with the top so it’s not the top we’re talking about. It’s the you know, calm But then average provider, there’s the rub. And there’s the rub. So and in my instance, here in the United States, my whole goal is to try to bring the average competent provider, neurologists otolaryngologist, including physical therapists, occupational bring their levels up. Okay, because we have no access problem here in the US. I mean, if you if you were going to wait more than one week to see a doctor, call another doctor. I mean, you know, I hate to say a dime a dozen, but we’re a dime a dozen. Okay, so maybe in certain parts goes through symptom big country, you might be in an area of the country where you don’t have as many of them telehealth is taken care of that telehealth is going to start easing that, but by and large, our patients, they can go they don’t need a referral, they just go straight in. And so they’re carrying insurance. And they’re unless they’re in what we used to call an HMO, or health maintenance organization, or what we now call Medicare Advantage, which is another name of a health maintenance organization. You can go anywhere. Okay, and if you don’t like the care there, you leave there. And you’re over here. So really in the United States, access is not the issue. Okay, the issue is once you’re in, okay, is what is the level of expertise of the person that you’re seeing. And I have been working on that for decades through the American Academy of Otolaryngology teaching at their national meetings, and all have a roomful of 200, EMTs. In teaching the exam and teaching laboratory and teaching differential diagnosis. So I think the big difference is in access, it’s not in quality at the top quality of the top is excellent, both countries, I mean, just stellar. Okay. But once you start peeling back the onion, you know, most of the people aren’t able to get in to see Peter, and you can see it now, you know, his, his his his area has a limit because you just can’t manage the volume. And so my my goal in teaching in the United States, is to try to have good providers become better providers and develop multidisciplinary clinics, not one of us can do this alone. Not one of us. Okay, we all bring something very special to the table. And you know very well Kathleen and I’ve been banging away at Vida diagnosis first, diagnosis first, no treatment before diagnosis. Okay, you can make a lot of people feel better, you can do a lot of things. But you delay diagnose that you delay the diagnosis. Unless you really don’t get at it first and say can we really do the best we can to find out what’s wrong with you. Then we refer within this multidisciplinary system. And that’s how in the United States this can be improved. I had a meeting just yesterday at the university to develop at Washington University, what’s called the neuro vestibular Institute. Okay, and VI, n n vi is going to have neuro ophthalmologists and neurologists and psychiatrists and the whole game the whole gamut. And what we do is we agree just like Peter has, in Leicester, we agree to internally use our referrals to meet together to talk together and actually work together as a team, instead of having isolated silos that have that help at work as a team. Okay. So I think the biggest difference is in how you get there. Now we do have a sort of a quote unquote, National Health Service service, it’s called Medicare and Medicare for those who are over 65 functions very much like the NHS, except with Medicare, that Medicare patient can still choose the provider. You know, they don’t have to go through GP there’s Yeah, well, Medicaid comes in if if you’re under a certain income level. So under certain income level 65 Or if you’re disabled, you don’t have to be 65. So there is no there is there is paid health care through the government in the United States, you just come in a different form. It isn’t universal. Okay. But it does cover a good deal. Who do providers? I don’t think the American patient has the money to walk into the doctor’s office and say, hey, I’ll I want you to see me and I’ll pay for it. That’s never happened in my practice. I mean, nobody.
Dr. Kathleen Stoss, DPT
The other group in the United States who have less access to the provider they want would be those military, active and retired military in their TRICARE system. They are pretty limited in their ability to access additional services. I think a lot of people that I engage with in my private practice, do elect like you said in the UK to self fund, their rehabilitation and even their trips to get diagnosed of CES elsewhere. So there are those people who do that. But then and then, you know, there were those charity or cases because of income level don’t have the same access, and they’re really using the internet as well, like you said, I wonder if our shared responsibility to improve triage is something that we can learn from and share across the pond. So we’ve worked on triage protocols for the emergency department and for primary care providers. Is that something that applies to both countries?
Dr. Joel Goebel, MD
Well, I would say yes, because as we’re talking about, you know, you get overwhelmed. And even my neurotology colleague, who took my practice at the University said, I can’t take I can’t take all the walk off the street, you know, my family doctor said, come in and see me, I can’t do it. I don’t have enough days of the week, I don’t have enough hours in a day to take the load. So somewhere in here, I think, and in our new neural vestibular Institute initiative, there’s got to be a system of triage that says, Okay, where do you start? Where do you start with meaning upon what we see in your medical record? What you see in your history, we at least have an idea, which provider might we start with first, and then we can go refer within the NBI. Okay, to take the load off of one person, getting all 7000 patients. The
Dr. Peter Rea, MD
most important point Katelyn, and this one, Joel and I are really very aware of Joel started with a lot with essentially a generic approach about it very simplistic, looking at what key questions are actually just really small number of questions like, Are you dizzy, rolling over in bed, etc, etc, can really help define the nature of the dizziness and Joe could expand on that. And it’s really helpful a to try out, we took it one step further here, and that we teamed up with IBM, and one of the founders of the Semantic Web. So big, big international name. And we we set up something called Balance aid, which is balanced, artificial intelligence diagnostic company. So we’re going to use AI powered diagnostics, we’re hardly unique in doing this. But this was actually quite a few years ago, we did this before much of AI boomed. And we tried very hard, and we raise funds for it, and we lots of information, lots of time into it, and we weren’t successful. But, you know, failure is success. I think it was Einstein, that that wasn’t it. And we still learn from that experience. And I think it’s important to know, for everyone listening, that we may not have the perfect, try our system. At the moment, Joel has produced a really useful guide for that we’ve tried very hard to get a much more sophisticated version. There are other Babylon healthcare may be a company that was quoted over in the stock market in the States, and how much hundreds of billions of dollars that’s essentially gone down the pan. Now that didn’t work. But people are working hard on this type of area. And surely, with the technology we’re developing, the must be a much clearer way it was developed, from a diagnostic perspective, a much better way of separating our patients out but like headed, maybe going to a physician on syncope clinic, it was spinning, that becomes me who’ve got palpitations go to college. And so that’s a very simplistic way of doing it, but also looking for red flags, and so on who really needs to be seeing the important area.
Dr. Kathleen Stoss, DPT
So let me ask you, Dr. Goebel, do you think that most people enter the health care system in the United States through the primary care physician or the emergency department? Do you have a feel for Oh, no
Dr. Joel Goebel, MD
primary care?
Dr. Kathleen Stoss, DPT
Okay, primary care what about in the UK is that primary care or emergency tend to one primary care. So, so I think that might be you know, where the emphasis lies because you’re saying there is a path to get the good care, but it’s getting those primary care doctors to feel confident triaging patients or trial version patients to see where the referral needs to go. I’ve found here that some primary care, doctors will choose the neurologist every time as opposed to an e and t every time. And I think that you both are communicating that there’s a little bit more thought and consideration. It’s not a there’s an algorithm that is out there and that is getting produced and shared so that we could thoughtfully make that referral.
Dr. Joel Goebel, MD
Let me let me get to that just a second. All right. Our family practices nurses and our interests have no interest in getting you know, way deep into triage. That’s, that’s just not what they’re going to do. Okay, what they’re going to do is they have a patient who’s have a balance problem, vertigo, dizziness, you know, they’re within within that realm. We need to be able to have them send and we triage, okay, because I’ve been at this for years to get them to triage. And just like you said, you know, they’ve got their favorite doctors, that’s their level of triage. The Dizzy patient is really to the to the internist to the family practitioner is really not a high level patient for them. That’s
Dr. Peter Rea, MD
I think we, as physicians or surgeons, we can help her hugely. And if there are conditions listening, one of the things that I found incredibly helpful here when I came was we spent set up a group called spin doctors, and I don’t know it’s been doctors, it’s got the same connotation in the States as it has this same same meaning. But we call ourselves a spin doctors anyway. And we had cardiology, and physiotherapy and audiology and EMT, and geriatrics and etc, etc. And we would meet up every two or three months, we’d give each other a lecture with Dr. Rick curry, we created this clinical work, we got to understand what each other needed. So if we wanted to refer on, but also, now our general practitioners, our primary care physicians have to fill in a form for every referral in our community. It’s called the prison form. And it’s up to us as individual departments to say, Have you done this, have you done long standing blood pressure, this is vertical to try and direct the patients in the right direction that drives the local doctors crazy, because it takes a lot of time. But there is a way that we can try and direct our patients to center and it works reasonably well.
Dr. Joel Goebel, MD
Why it works, Peter, because you put the pinch to them to do these things. And they’re not, didn’t do that, you know, they’re not doing that. And the spin doctors is a great idea. But you in the United States, we’re talking about 40 50,000 physicians,
Dr. Peter Rea, MD
I’m talking within I’m talking within a local community within a single hospital.
Dr. Joel Goebel, MD
And we talk about that strategy as a as a global strategy for United States health care. That’s, that would be a that would be that’d be a yeoman’s job
Dr. Kathleen Stoss, DPT
to do. And I agree, I think it’s important. Each time I talk to someone on an international level, and I’m sure you do, too, I’m reminded of the size of the and the size of the countries, and that UK is about the size of Oregon, you know, and that the United States just is so large that some of these solutions that work for smaller nations, we’re just not able to logistically do but I, but I understand. And I appreciate that, you know, getting people to the right practitioner as quickly as possible, is our shared goal. And
Dr. Peter Rea, MD
but just to look at it from a lesser, we’ve been very positive to that. And quite likely we should be positive. But if you look in our practice here during the COVID, the waiting times from referral to treatment in balanced clinic were two years. We’ve got it down to 62 weeks now.
Dr. Joel Goebel, MD
How many weeks Peter 62.
Dr. Kathleen Stoss, DPT
So in this case, I feel like there is certainly that the kind and reasonable and ethical thing to do is to see if a person can receive some relief, while they’re waiting for that referral. Do you all then in the UK with those wait times give access or give the patient permission to see a vestibular rehab physio in the event that there is some relief to be had before they have the diagnosis?
Dr. Peter Rea, MD
And could they were there the wrongs, the numbers, you know, of the random festival of videos out there to do that. And they’re hugely stretch even within the health service. It’s just there’s not enough people to do the amount of work. We’ve got to, you know, a rapidly expanding population, we’ve got a rapidly aging population, and fabulously with all the great advancements in medicine, we’re keeping people alive a lot longer. But when people get into their 80s and 90s, the brain is still really active, and they want to go and do lots of things and they can’t do it. They turned to the healthcare system, quite rightly, to try and improve the symptoms. And because so many more people when they’re in that situation who weren’t there previously, the system can’t cope. It’s just completely overwhelmed.
Dr. Joel Goebel, MD
Or here’s the here’s the Gordian knot, and there’s no knife yet. Okay, the Gordian knot is all the people who have dizziness and needed to be taken care of. And the knife would be we’ll just cut right through it and get them into you know, as soon as you can to get some get some help. I worried you know this Kathleen, I worry about delay in diagnosis. I worry about the patient sort of shunted sideways and said, Oh, I’m going to make you feel better. And that puts a stall on finding out what’s wrong. Do you have Intracranial Hypertension Do you have idiopathic you know, do you have a tumor? Do you have NPH normal pressure hydrocephalus? You know, are you are you Parkinsonian I mean You don’t get you don’t want to delay in diagnosis while you’re trying to make people feel better. So I get it, I really do. I appreciate that. So that’s where a sort of a watchful eye over who gets help here while they’re waiting to get this diagnosis.
Dr. Peter Rea, MD
On Jonah, I’ve got experience with that, because the balanced course it’s a three day balanced course we run in Leicester every year, and it’s actually intentionally a multidisciplinary course, those doctors, physiotherapist, builders, etc, on it. And in some regions, if it’s therapist audiologist have been told, like you can run the center supervisor, and the doctor that often just wasn’t engaged whatsoever. They felt very, very alone. And I don’t think it’s fair on with exactly that range of potential diagnosis that Phil talks about, in leaving people to manage patients who actually may have significant complexity underlying it. My experience, it has been, over time that the complexity is going up exponentially. And I think if we were going to have a division that isn’t all about, could we use age as a simple division? If I didn’t want to pluck a specific age out? Yeah, but if you’re 75, or 80, or above, should you be going to a clinic led by care of the elderly doctors to look at your osteoporosis, maybe your BPPV, your postural hypotension, your peripheral neuropathy. And if you’re younger, you come to a vestibular clinic, I don’t know, these are the sort of very difficult to see that conversations, we’re going to have to have we, we have them but we don’t feel brave enough to make a decision at the moment. And as a, as about carrying rounds. Doctor, I want to see everybody because I want to get everyone better. But they’re just not enough medical people available to offer the services. And just to put numbers on it, if you’re listening and you’re not aware, in the UK 30% population will say their family doctor before the age of 65, with dizziness. And it’s the commonest reason to see a family doctor over the age of 75. Just think, think of the numbers is huge,
Dr. Joel Goebel, MD
right? And that’s the same percentage Peter, so you just multiply it by 340 million people. And now you see the numbers now. Now you see the numbers. And so I think the only thing to my answer the only the only answer here I went way back to what I said in the beginning is education to all levels and the development of more multidisciplinary interdisciplinary centers. Do have these abilities to at least have access to these centers, not just one not just to, you know, around the nation, you’re not alone. Either you could you you could easily in the UK what use seven 810 each county, every
Dr. Peter Rea, MD
county, every county, every
Dr. Joel Goebel, MD
every county million. Yeah.
Dr. Peter Rea, MD
We have a population of a million we can we can’t cope. Because got a population of what 66 70 million. So we really need a jury centers in the UK, just to give you an example. And in the States because that’s 400 centers. I don’t know
Dr. Kathleen Stoss, DPT
what I what I think obviously the higher level of expertise being the higher level of education, the fewer there are. So if we looked at this health care, vestibular provider health care as a pyramid, you know, there are probably I’m guessing there are more physiotherapist who are interested in vestibular rehabilitation than there are neuro otologist. Right. So when we talked about educating primary care or the emergency departments, do you think it’s possible to educate like you said at all levels so that the medical doctors and professors of medicine would have more confidence in the audiologist and the physios seeing these red flags, and being able to assist to provide comfort to the patient while they await these formal diagnostic testing, because using their clinical evaluative skills, you know, they could be educated so that the medical providers feel comfortable letting them fill that gap, because a handful of them are going to have benign positional vertigo or peripheral neuropathy and knee balance therapy or not have NPH. And some of the other things that you suggested do really require MD intervention.
Dr. Joel Goebel, MD
I think that the key here and we’ve talked about this Kathlyn before is there’s low hanging fruit, there’s certainly low hanging fruit that can be managed at levels, certainly not at the neurotology neurology level. There’s a risk, there’s a medical legal risk in the United States. And that medical legal risk is that if there’s any delay in diagnosis of somebody who was held on I don’t know whether the The physical therapist who are the audiologist who is hanging on to that patient who has a blurring, a bludgeoning process going on that isn’t isn’t recognized, and physicians are going to have it too. Don’t get me wrong. Okay. But scope of practice when you look at scope of practice, and is diagnosis of medical disease in the scope of practice of Allied Health, that’s, that’s, that’s where it gets tricky. You know, because if you if you’re if you’re asked, Are you trained to make a medical diagnosis, not not a not a working diagnosis, or not, but a true medical diagnosis, then now it gets tricky. So I think that if physical therapists work really tightly with their medical colleagues, I have no problem with that. If there’s a tight relationship between the PT and the and the and the MD, no problem, I mean, you know, then that can be triaged that can be worked out as long as as long as they have that relationship. But if that relationship is disconnected, and the PT is over here, 200 miles away, and the MD is over here, and there’s really not that tight connection. I think that that could be that could be a challenge. It sounds good. Sounds great. Okay, so it really sounds great. Remember that, Peter? What 20 years ago when the National Health Service wanted to bring down the level of the initial provider for dizziness to non non medics.
Dr. Peter Rea, MD
It was a disaster. I mean, the the the concept is a really important one, Katelyn, and there are models where it works. So if we look at hearing loss, if it’s, you know, your certain age and you’ve got bilateral sensorineural hearing loss, you can refer them to the audiologist, that’s fine. If you’ve got tinnitus, and it’s a bilateral symmetrical tinnitus, you skip the doctors now that saves hundreds of appointments. We have directly clinics, so they are seeing a doctor first, but we don’t follow them up something lots and lots of things. So balance, patients don’t have to see the doctor. We do have an unfortunate lesson in the room next to some very, very highly trained therapists and audiologists. You know what our experiences even they are very uncomfortable making the diagnosis themselves. And what Joel was alluding to was a system that we tried, we thought we could put balance into the community and I can only share our experience. I’m not dictating what’s right or wrong. I’m just saying our experience in the UK is to try and we had this problem 20 years ago, the result. Let’s get a GP with a special interest. We call them hipsters GP with general practitioners. In each each general practice who can see the balances efficient, and they can then get treated in the community and they’ll take a very large number of them out of hospital care. It was just a disaster. It just didn’t work. The level of care from the doctors wasn’t high enough. Now, I think, Kathleen, you would have a very good argument to say that the level of care and diagnostic skill from a list of a physiotherapist will be significantly higher than from a generalist and I accept that. And again, for people listening, the crux of this argument, this is the nub of it is if you have a balanced disorder, do you want will die Johnson named Gnosis you have a vestibule policy, which is evolved into persistent construct perceptual dizziness, and you should try treated with vestibular physiotherapy, cognitive behavioral therapy and an SSRI, for example. Or do you want to come and be told you are dizzy, and we will treat your dizziness. That’s very crudely the argument we’re making. And it’s a difficult one, because if we you know, in older patients who are steady and at risk of falling, that better diagnosis is often the best way forward. So you are 90 years old, you’ve had a couple of falls, you’re quite fragile. Perhaps the best thing for you is to have rails or to have that loose bug taken away to have a walking frame to be given some vitamin D and some maybe calcium bone strengthening that’s a holistic approach is the right way. But our experience has been trying to do that in younger patients hasn’t been as successful as we hope, because most of our younger patients have wanted a name diagnosis. And, equally importantly, other things it’s good to know I’m sitting in my treatment room. And there is a chair over there where patients are sat for 20 years. And the common thing I hear from that chair, when I say you have abc is that mitosis. Patients look me in the eye. And they say, Thank God, I’m not going mad because everyone has a disease problem is terrified. And so would I be if I had those symptoms, that there’s something to say trouble going on within them, and having a diagnostic label and confirmation. Actually, this is a real, physical thing that’s wrong with you. You’re not weak, you’re crazy. Nothing like that. This is a physical thing that you’re suffering from, we will do our best to help you. I think actually, he’s very powerful.
Dr. Joel Goebel, MD
I mean, Peter, one, one quick point on that. The some of the best things you can tell a dizzy patient is what they don’t have. Don’t have Ms. You don’t have Parkinson’s, right? Don’t have these terrible diseases. All thank, thank you very much. So a lot of this. And the last is I was flying back from the UK on my last visit last year, I plugged in a TED talk. And the TED talk was talking about how you engage an audience and the three things they said to engage an audience, every talk has to have three things, you have to tell the audience what? So what? And now what? Think about that? What? So what now what? Well, that’s what your patients want, when they come in to see you. What’s wrong with me. You got to know the what, then the CIO, what okay, what what, you know, what, how important is that to you? Is it maybe a problem? And then the third one is now what? What are you going to do about it? Okay, so
Dr. Peter Rea, MD
let’s answer that job. Because that’s a that’s a brilliant question. What can our patients do? Who are really struggling to access, I can give the UK view on that. And, you know, if you are waiting, and you have positional prisoners, and so on, well, maybe you can try some home exercises, and start some vitamin D, it’s a good thing to do, because it’s been shown to be helpful and get some exercise and think about whether you might have migraine. Have you got headaches, because it’s so common? Katelyn,
Dr. Kathleen Stoss, DPT
let me interject right there. So right there, you’re saying there might be some things that could do while they wait. My question is who’s going to give them that information? If the audiologist has already done the hearing test, the audiologist is going to be asked that question, What can I do while I wait and the audiologist is going to feel compelled to not harm the patient and withhold information that might be helpful, like, Hey, you might go take some vitamin D, go online and get some exercises while you wait. Thereby, they’re in a position to sort of provide treatment or remedy while the patient awaits diagnosis. If they get going sent to you know, in every clinic in the, for the athlete while they wait for the brain MRI, or the other diagnostic testing, that therapist says, I don’t think you have BPPV. But why don’t you you know, what am I going to do while you wait? I think that the conversation is excellent, but that those people who see them first and see them for those preliminary evaluations are going to want to help. And if people across the globe have easier access to audiology or physiotherapy, they’re going to be asked those questions, what can I do? What should I do? And even while I wait with my patients for diagnosis, I’m still in a position to say more than nothing, we have to diagnose first. So just go home and wait, they won’t do that. We help them get on the internet and whatnot, too. I tell them not to do a somersault. I tell them not to stay away from self particle repositioning, you know, but they’re going to look to us anyway, what do I do in the meantime? And that’s where I want to focus the conversation now in our final remaining minutes is how do we empower people on both sides to really advocate for themselves to try to increase the efficiency and accuracy of their journey? Back to balance?
Dr. Peter Rea, MD
is a brilliant question is a really important question. And unfortunately, in the UK, we don’t have lots of Catholic things. You know, we don’t There aren’t a vast number of people out there, there are some physiotherapists where you can access a private very difficult to access a specialist, specifically physiotherapist or through the NHS. So I think that the ways are using groups like this using life on the level to know you’re not alone, to use the internet if you can to try and identify where you think your symptoms are. And there were very simple we have very simply the Balance Disorder spectrum, if you Google balances or the spectrum, we’ve done a very simple chart which you can look at to try and break down different types of causes of balance and that might guide you in the right direction to a cardiologist or an EMT or whatever it might be. And I’m afraid that in the UK is going to be a matter of battering your DP and not giving up to try and get your referral. If it comes unbearable, seeing whether you can afford To see a private consultant, but if you do that, please make sure they’ve got expertise in balance, do your research on it. Because you know, it’s not terribly efficiency and someone who, who just does a little bit of it, you’re gonna spend money do that properly. And in the UK is not so expensive. And the majority of our patients do so funds, a large number of patients are going down that route. But we are, we’ll do everything we humanly can to try and expand NHS provision. But you know, I’ve been banging my head against the wall for 20 years trying to make this happen. And we’ve definitely made good progress. Got lots more centers, there used to be a many, many, most regions have good access, but not everyone does.
Dr. Kathleen Stoss, DPT
Yeah, I think about in this country, we have physician’s assistants or nurse practitioners sort of carrying filling the space for triage and early diagnosis and treatment. Is that happening with you too, because my personal opinion is that in the realm of neuro vestibular medicine or vestibular treatment, that that paraprofessional or non MD professional, like a vestibular physiotherapist would fit in that position of a very skilled one in in helping triage those patients. I think that needs to be done so that the internet is not doing it. But then a real trained person is doing it, otherwise, they’ll go to the internet. Yeah, but
Dr. Peter Rea, MD
my experience has been quite the opposite. You know, our family, doctors find it very hard to try and find it very hard to diagnose. and physician assistants, who are by definition in general practice, generalist, the they just don’t have the background or training to do that. And we are getting referrals through from them. And they’re generally not of high quality referrals. So maybe it will be success in the future. A lot of people are being sent to see the nurse in the practice or the business associate in the practice, and not even seeing the doctor in your dental practice. He wasn’t giving a terribly good piece of advice. Anyway, in many cases.
Dr. Joel Goebel, MD
Yeah, I think I think this Kathleen, this works, the nurse practitioner, the PA and you know anybody on the team, as long as as long as there’s a relationship within a team. I think that would work. Okay, so it isn’t it. The therapists, physical therapists and the audiologist, they all can do wonderful work and to help with triage. Okay, but it works in a team. And all you got to do is Google the doctor’s name in the United States. And you’ll see exactly what kind of team they are, you’ll see exactly where they were trained as their where their fellowships, you’ll get a real good idea of who their practices are, you know, who would be good, as Peter says, you know, this, this person really focuses on skull base surgery, they don’t really see Dizzy patients versus some of my colleagues and neurotology. They really are. They’re really good. And some of the neurologists are really quite good. So our practices are very transparent. You know, you just Google us, you put our name and and bam, our whole life comes up.
Dr. Kathleen Stoss, DPT
Yeah, I think this is an amazing conversation, and one that really, really has a lot more legs, we could spend hours on it. So I would invite you back to continue the conversation. But at this point, I think we have really showed our passion and our commitment to the vestibular patient and their journey through diagnosis all the way through treatment. And having these conversations is an important next step. For people to know that we care. We’re, we’re coordinating across the globe, we’re connected and we’re working hard. There’s many, many places to fit in. I invite people who are watching who have an interest in this whether you are a patient or healthcare provider to connect with the Vestibular Disorders Association. We need and depend on volunteers. We thank Professor Ray and Dr. Goebel for volunteering their time to be here today. Because this is we are as good as those people who show up today. And we have done an excellent job. I think in starting this conversation, we invite more participation in from all of you in the UK. Click on to vestibular dot O R G, go to the website and find how you can participate and get involved. There are lots of places to plug in. We’d love to be able to continue this relationship with the UK and enhance our offerings to your specific UK patient population. And what I’d like to do finally is just close up we’ve taken the hour we’ve we’ve done it and I invite you all to come back and I appreciate you so much. Last Words. Wonderful.
Dr. Peter Rea, MD
Thank you, Kathleen. It’s it’s lovely to see Yeah, and it’s obviously Joel again. The relationship we’ve had been in the UK in the US over 20 years has been absolutely inspirational. And you know, there are so many good things that have happened, and lots of good things to have.
Dr. Kathleen Stoss, DPT
Sorry, sorry. Let’s take advantage of this momentum and do some more. And thank you again, Kevin, for making this happen and signing off for all of you. Thank you so much, and we’ll see you next time. Thank you for listening. Don’t forget to subscribe so that you never miss an episode to stay up to date on all things vestibular including this podcast and more join VITAS free monthly newsletter at vestibular dot o RG forward slash subscribe. If you are a vestibular patient who needs help on your journey back to balance VITA is here for you. You can get one on one support by emailing info at vestibular dot o RG or by calling 1-800-837-8428 That’s one 808 3784 to eight