In our first episode we explore what makes neurology one and discuss the commonalities between disorders as well as the common challenges.
We’ll be hearing how these can be addressed with an integrated response, as well as how neurology should be positioned within broader discussions on brain health.
Plus we’ll have messages from the neurology community and hear from a person living with MS.
For more information visit www.oneneurology.net
In our first episode we explore what makes neurology one and discuss the commonalities between disorders as well as the common challenges.
We’ll be hearing how these can be addressed with an integrated response, as well as how neurology should be positioned within broader discussions on brain health.
Plus we’ll have messages from the neurology community and hear from a person living with MS.
For more information visit www.oneneurology.net
Welcome to the One Voice for Neurology podcast, a series of seven podcasts, exploring why it's time to make neurology a priority, how that c an be achieved with a global and a uniform response and what that could mean for the future of neurology and those living with a neurological disorder. I'm Sam Pauly, and you're listening to episode one, entitled OneNeurology.
Vladimir Hachinski:Well, thank you for joining us on this special series of podcasts for the next seven days we'll be bringing together voices from the world of neurology, from doctors, scientists, and policymakers, to people living with neurological disorders, their carers and those fighting for better conditions for those affected today and in the future.
:Now, at least one in three people of all ages will have a neurological disorder in their lifetime, a sobering figure and relevant to us all. Across this series we'll be examining how neurological disorders are being treated across the world. Discussing why neurology has traditionally been under-recognized and looking at what people living with disorders truly need today and tomorrow. And throughout, we'll be talking about the new OneNeurology Initiative, what it aims to achieve and why it's needed. In just a moment. I'll be joined by three eminent guests. Joke Jaarsma president of EFNA, the European Federation of Neurological Associations which brings together associations of patient advocates from all over Europe. Professor Claudio Bassetti, president of the EAN, the European Academy of Neurology. The EAN r epr esents the voice of neuro logists in E urope and Professor Bassetti leads the neurology department of the university hospital in Bern. And bringing in a perspective from the other side of the Atlantic Professor Vladimir Hachinski, Professor of neurology at Western University in London, Canada. But first, what is the OneNeurology Initiative? Why do we need it? And why now? Well, to introduce the initiative, here's Donna Walsh Executive Director of EFNA
Donna Walsh :Neurological disorders are conditions of the central and peripheral nervous system, all connected to our body's most complex organ, the brain. There are more than 400 recognized neurological disorders. This includes degenerative diseases like Alzheimer's and Parkinson's, cerebrovascular diseases like stroke and w ell-known conditions such as migraine, epilepsy and multiple sclerosis. Neurology also encompasses many rare neglected and even contested diseases. Collectively these disorders have the highest prevalence biggest disability and greatest costs among n on-c ommunicable diseases worldwide, but decision-makers have traditionally been looking away. This is in part due to diversity, amongst neurological disorders. They are often not considered as one disease family. And so whilst individual diseases may find their way onto the public health agenda. Neurology as a whole is often left behind. The clinical presentation of these diseases can vary enormously and the needs of each patient can be diverse. Some of these disorders are treatable. Many have no cure. Others need long-term chronic management while some are rapidly progressive and ultimately terminal. So although these disorders are so common, the level of awareness amongst the general public, our policymakers, and even the health and social care community remains relatively low. This is why the one neurology initiative was conceived. We want to demonstrate what makes all neurological conditions one, and what's in it for the community if they are addressed together. However, this is not just about raising awareness. We also want to come together and advocate for neurology at all levels, giving policy and decision makers, the information they need to prioritize neurology and to drive positive change. The time for action is now with thoughts turning to our world after COVID-19, we need to ensure that neurology is prioritized. As we look to future-proof and build resiliency in our healthcare systems. This can and should be done. Despite the differences. There are many common challenges and solutions that can be addressed with an integrated response. Focusing on prevention, ensuring timely diagnosis, enabling equitable access to care, fighting stigma, or strengthening the neurological workforce together. We can bring hope and solutions to people with neurological disorders across the world. It's time to make neurology, a global public health priority
Vladimir Hachinski:Executive director of EFNA, Donna Walsh there acquainting us with the one neurology initiative. Professor Hachinksi will be joining us shortly. But first listening into that introduction, was Joke Jaarsma, the President of the European Federation of Neurological Associations and Professor Claudio Bassetti, President of the European Academy of Neurology, a very warm welcome to you both. Claudio, on the face of it there se em t o be so many differences between disorders. What actually makes neurology one?
Claudio Bassetti :This is an easy question and the answer is a little bit more complicated. We obviously need a highly specialized research and care for specific diseases. We cannot expect anybody to be able to treat everything today, diagnose and treat everything, but still the brain is is one. And the patient is one. And if you look at the frequency of a neurological disorder, it can happen quite frequently that one person has more than one disorder in his lifetime may have first sleep disorder. Then he may develop Parkinson's. We can have stroke, and then he develops cognitive changes. So we need to guarantee a holistic comprehensive view on the brain in terms of diagnosing it. And in terms of treating it, you know, when you look for instance at chronic neurological disorders, let's say after stroke or a patient with Parkinson's for years. Or a patient with chronic epilepsy or a patient with chronic multiple sclerosis, eventually, despite the difference in the origin of the, of the problem, the problem that these patients face are similar, it is about cognitive changes. It's about being handicapped, being disabled in the movement. It's about bad sleep. It's about emotional changes. It's about lack of independence, problems with bladder control. So we need to keep the field together because things are sometimes so connected. I would like to add also education is very important. We need to educate also future neurologists. And I should say GPS to have a view on the entire disease spectrum. We know that we have an insufficient workforce. We need to keep things together in the interest of patients, in the interest of care.
Vladimir Hachinski:Well Joke, let me pick up from your perspective, the perspective of those people that are living with neurological disorders. Would you agree with that? What, what makes neurology one, where are the commonalities?
Joke Jaarsma :I agree with Claudio during the years that I have been working for EFNA I have seen many, many patients suffering from diseases that I have never even heard about. And among all these, there is a oneness. If you like in the diversity as Claudio said, what is striking as well in the whole range of neurological disorders is that the overlap is between the various disorders that the overlap of unmet needs in these patients. And of course the issues such as quality of life and stigma and access. These are very, very much a commonality in neurological disorders.
Claudio Bassetti :And if I may add the brain is very much connected. The different areas of the brain are connected. Sometimes the connection between one disease and the other between one treatment and the other is unsuspected. And we are discovering all the time, new connections, that link one area of neurology with another one, there is for instance, a recent discovery showing that seizures, epilepsy, may also be a driving force of neurodegeneration. And we did not know this in a way that connections are so complex and sometimes so new that we need to keep a cross talk. I usually say one brain, one human being. So we need to keep together, uh, even if sometimes we have them to go to the super specialist for that specific issue, that specific problem.
Vladimir Hachinski:Joke, as I said, the one neurology initiatives being led by EFNA and the EAN, perhaps you could tell us how it came about.
Joke Jaarsma :I want to say, first of all, that, although the campaign was initiated by EFNA and EAN, it is essentially a global initiative. The major reason of course, is that we strongly felt, we at EFNA, that neurology as a distinct discipline was not getting the attention it deserves in spite of the fact that the brain is our most important and most vital organ. So over time we h ad r ealized that the public health space was increasingly influenced by global developments in particular. This happened, u m, when brain diseases were added as a fifth priority area. And w hen in addition, we saw that the WHO was paying much more attention to neurology. And when then last year, the world health assembly adopted this resolution on epilepsy and your neurological synergies. That was the moment that we decided it was time to start this and work on it in 2021. And so the overall idea of the one neurology campaign is to bring all stakeholders together in the coming year.
Vladimir Hachinski:Claudio do you want to add anything about how it came about the initiative?
Claudio Bassetti :For neurologists and for for the European Academy of neurology, the Alliance and the crosstalk and the, um, work with the EFNA is of paramount importance. U h, we need on one side to c ontinue t o support, u h, the super specialization in care and research. And then there is on one hand, the need to go into details. On the other side, we need as an act of will to put together again, everything in the interest of our patients, in the interest of neurologists. I think this collaboration is of great importance, and this is why we joined with great enthusiasm t his initiative.
Vladimir Hachinski:Joke, what's so important about the initiative?
Joke Jaarsma :In the patient community as a whole, we see that there is still more, much more need for information. There is a level of knowledge among for example, family doctors that results in wrong treatments and wrong diagnosis. And of course there's always in the patient community, u m, the, u h, the point o f, of enormous stigma a nd, and these are really items points that should be addressed immediately.
Vladimir Hachinski:Why do you both think it hasn't been done before?
Claudio Bassetti :Knowledge around neurological disorders, diseases and possibilities to treat them have made in the last thirty years incredible advances. So, uh, I should say that our discipline, uh, used to be seen as a diagnostic. This has been good in making diagnosis, not so good in making treatment in recent years, the progress has been incredible. So now we should care about early diagnosis and overall precise diagnosis because we have an amazing increasing in possibilities of treating neurological disorders. And this has led to the studies about the frequency, the impact that has shown us that there is an incredible amount of neurological patients out there. And we see also that the workforce is insufficient, and this is why we are here to ask for more support for more awareness.
Joke Jaarsma :Yeah. Um, as Claudio says, there was a lack of knowledge and the people suffering from these diseases were often told that there is nothing we can do. You will have to live with this. That was the message. And this has carried on for a really, really long time. And yes, yes. A lot of has been achieved as Claudio says in the past decades. And therefore, um, this is an added reason why it is now time to capitalize on that. If we want to start somewhere, I think we have to make sure that the political will is there. This is exactly why the resolution by the world health assembly is so very, very important. It will influence the whole campaign and hopefully all of neurology. And after that funding is going to be a crucial thing, funding after policy. It's the second, most important aspect funding, research.
Claudio Bassetti :I stressed before the progress that we've made, but everybody knows that we still have big challenges and we need to have more support for more research to improve diagnosis and eventually treatment care and also chronic care
Vladimir Hachinski:Joke, in Donna's introduction, she explained that although these disorders are so common, the level of awareness remains really rather l ow. Why do you think that is?
Joke Jaarsma :I think here a major point is that the general public do not realize that these well-known, diseases such as epilepsy, M S you name them, that they all stem from the brain. And in addition to that, I also think that many people, the general public or the policy makers, that's a very important one, that there is a strong belief that nothing can be done about many of these illnesses. So the result of all that is that people suffer in silence.
Claudio Bassetti :You know it's much easier for the general public, for the nonspecialist, even for stakeholders to understand what is heart attack, what is a cardiac problem? Everybody has maybe a different picture, but it kind of converge into an idea that is not present if you say"I have a brain disorder" then people start wondering, what does it mean? And if you say I have Parkinson's, I have multiple sclerosis. I mean, Joke said we have hundreds of diseases. T his makes it more difficult to, to understand, and also to convey as a message. This is one of the reasons why we have this neglect. When you do not have treatment, you may not care so much. I t does not change the life. And the big revolution is that we can diagnose and treat more and more neurological d isorders. And this is the great n ovelty. This is what we really should tell people, and this is why we need support. And we need awareness
Vladimir Hachinski:In a moment, I'd like to talk about the direct benefits that the initiative could have for people directly affected and living with the disorder. But before I do, let's hear from someone who has first hand experience in the first of our series of audio diaries from people living with neurological disorders.
Bettina Hausmann :My name is Bettina. And I'm speaking to you right now from the Belgian coast. I've been living in Belgium for the past 20 years, 15 of which with MS, I guess, for all of us who are diagnosed with a condition like that it does leave traces of course. I am one of those very lucky ones who have not been a ffected in their mobility. However, MS has changed many, many things in my life. For instance, u h, prior to being diagnosed, I worked as a senior manager in an international communications consultancy, and after d iagnosis, there were changes that really crept in. So it was not only the relapses, but really t he many things that were for me, not only before normal, but also part of my identity that they wouldn't work at all any longer. So I couldn't m ultitask any longer. I wasn't that spontaneous any longer. I couldn't bear the pace everybody was working in any longer and stress would be very, very complicated. So together with my bosses who were quite, most, who were quite nice, uh, at the time we changed my profile from a hundred percent to 80% to 60%. And even at some moment, I felt that if I were to continue this on the long run, I would really run against a wall. So I decided to go independent and set my own profession up in a way that it does my health rather good. I now work at my own rhythm really with those pauses that I need. And I enjoy it very much, what is sometimes a bit frustrating is that people don't necessarily understand what MS is. Of course, I don't even understand that even if I wish to. So it's hard to articulate, but when you look as if you didn't have a thing it's hard to grasp, what would be fatigue, it's hard to grasp where would be the cognitive issues. It's hard to grasp, where is the change. And I have to say that I was very, very glad and grateful when I was meeting other people with MS both in the professional realm, but also via MS. Sailing, because you realize that although everyone's condition is totally different, we have so much in common, but what we have is so much under recognized and undervalued. And now that I work quite a bit, also with the neurological community, I realized that this goes even beyond MS, but that there are many common patterns and many common challenges and probably also many common solutions. So I really, I really think this is a lovely initiative.
Vladimir Hachinski:Bettina Hausmann there talking about her experience of living with MS and the impact she hopes the OneNeurology initiative could have. Well, before we heard from Bettina I was speaking with Joke Jaarsma President of EFNA and professor Claudio Bassetti President of the EAN, and I'm delighted now to welcome our third guest Professor Vladimir Hachinksi. Thank you also for joining us.
:Let me begin by adding to something that Claudio and Joke have said. First of all, you asked earlier on why is it that, uh, the disease of the nervous system have come into prominence, there is a phenomenon that we are not fully aware of and that it we're dealing with this acute pandemic, but behind this pandemic, there was a slow s tark growing pandemic of stroke, heart disease, and dementia. And this is largely driven by the aging population. There is a commonality to all three. In other words, if you have a stroke, you d ouble the chance of developing dementia.
Vladimir Hachinski:And it turns out that there was a core of controllable risk factors, but they all share, you know, the things that we all know about, you know, blood pressure diet, the physical activity. But I think what we often forget is that we are not living in isolation and that is that we're part of a larger community. And I think if we're going to solve the problem, we have to take a very holistic view. And the holistic view is that we have to look at our environment. We have to look at socioeconomic factors. We have to look at individual factors. The most valuable three pounds in the universe are our brains. And act through our brains, we're shaped by environment, and we shape the environment. So there's nothing more important than having health. And so I think the whole idea is to invest in brain health, which is the ultimate wealth,
:And then making sure that it keeps us functional and as effective for as long as possible
Sam Pauly :Claudio, How do you think that we can bring everything together under this one initiative? Will there be people out there that say it's contradictory or can the two things work together?
Claudio Bassetti :I think we have to realize that we have different challenges and we have to approach them with different strategies. I mean, if we have a specific condition for which we have, um, specific diagnostic pathway and a specific treatment, then we should rely on the specialist for that. But if we talk about, let's say chronic care, then we have to realize that very often the challenges of different types of patient are similar. So we need to think about a common approach. Let me make another example. When we talk about prevention, you know, and I like, uh, that, uh, the fact that Vladimir also introduced the concept of brain health. So if we think about prevention, we are doing with diet, we are doing with physical exercise, w e're doing with cognitive exercise, w e a re doing with good sleep, very good things for many neurological disorders in terms of prevention. So that's where I think that we should separate, you know, the specific target, t he specific action with t he whole approach. And this is the balance that I think we need a specialist to find between super specialization on one s ide and keeping i n view on everything.
Sam Pauly :Let me bring Joke back in,Joke would you say from the perspective of people living with neurological disorders, this benefit can be, of an integrated approach
Joke Jaarsma :Allow me to get back to what Claudio said, every patient represents a complex, complex situation, and that because of that, it is important to look at the commonalities. I, I fully agree with that, the commonalities and the parallels between the courses and the underlying mechanisms. This, this has been very, very clear in a number of disease areas and even in drug development where we have seen serendipity findings. So looking at these and seeing, um, this whole initiative leading to an integrated approach, I think eventually this will all lead to more awareness and more knowledge.
Sam Pauly :Let me come back to you Vladimir. Can you tell us a little bit more about your work on the links between stroke and dementia, um, and why this is a clear example of the cure one, cure, many, philosophy,
:Dementia is untreatable, but it's largely preventable the world stroke organization. had a proclamation in which they're calling for, for, for not only the prevention of stroke, but also potentially p reventable dementia. And so this d eclaration was endorsed by all the major organizations o f the brain. So t here's a recognition at the level of the international o rganization d eal w ith the brain o f t he heart. We need to do this together. There is a commitment, at least at t he level specifically o f t he world stroke organization and the world heart Federation to begin doing things together as we need to do. And by the way, even though we're emphasizing the common conditions, let's remember that, that I think as Claudio is fond of saying, if you have one condition and you a dd another one, that's worse than just having two separate ones. So, so we have to look at the patient as one.
Sam Pauly :Claudio Let me bring you back in quickly. Are there any lessons do you think we can learn about these links between stroke and dementia in terms of the one neurology initiative?
Vladimir Hachinski:I cannot add anything to what Vladimir has said, but I would like to make another example. We know now that very subtle sleep disturbances may be the first sign of neurodegenerative disease. So we need to keep the cross talk despite the specialization and we have one brain and we should take care of the entire brain and not just think about pieces.
Sam Pauly:Joke, let me just follow up on that with you. How important is the person living with a neurological disorder in the whole process?
Joke Jaarsma :Here, I am thinking of research and the role of patients in research and, and that is, um, uh, the most, the most obvious example is, uh, participation of patients in clinical trials. It is, I think it's very, very important to involve patients in that process because we, as patients, we bring the real, the lived experience in the clinical trials. And it has been shown already because this process is already in action. If you like, it has already been shown that sometimes patients have brought totally unexpected new view points out of the traditional way of thinking, or are far beyond the existing protocols that are used in medical practice. So, um, yes, it is a very important point and patients do participate increasingly, but there are still many challenges, as you can imagine. And that is important because as I mentioned before, t here's very, very few diseases for which there is a cure and treatment for most is really s uboptimal. So our patient community, all of them, they are waiting for breakthrough findings. And that in the end is what all of this is about
Sam Pauly:Claudio?
Claudio Bassetti :And I would like to say one word about this. If I may just really comment, I think we scientists involved in research need and more To involve patients for different reasons. And one of the reasons we need to understand what is the outcome that really counts for the patient? The example of Parkinson's is, you know, w e sometimes think the tremor may be the most disturbing disturbance, but when you look at chronic course of Parkinson's, t here may be other things turn out to be more relevant, you know, cognitive decline or f alls or whatever. So I do think that if we really want to develop effective and impactful, u h, treatment, we need to listen to patients w ho know exactly where and how we want to help them most and not just look at our scales or measures that may have very little to do with t he, the life of our patients.
Sam Pauly :Well we'll all talk a little more in just a moment, but before we do throughout this seven part series, we wanted to hear from as many people as possible in the neurology w orld. So we set up our very own, slightly fictional one voice for neurology podcast answerphone and we've invited voices from the field of neurology to leave their messages for us. Let's see if we have any messages,
One Voice for Neurology Voicemail :Hello, you've reached the voicemail of the one voice for neurology podcast. Please leave your message after the tone.
Magdalen Rogers :Hello, my name is Magdalen Rogers. I'm the executive director of the neurological Alliance of Ireland and umbrella of over 30 patient organizations. We bring together a community of over 800,000 people throughout Ireland who are living with a neurological condition. All neurological conditions have their own unique characteristics and challenges. One thing that unites them, however, i s the wide ranging consequences of a neurological diagnosis. Surely there is no other condition which impacts so much on so many aspects of what we are and what we do, think, and feel it's the shared experience that represents our strength. The one neurology campaign has a unique opportunity to unite people across the neurological community and work together for a better future for people with neurological conditions worldwide.
Eduardo Pisani:Hello, my name is Eduardo Pisani. I am the chief executive of All.Can international a global n onprofit multi-stakeholder organization focused on improving cancer care efficiency, progress originates from the collective wisdom, combined with the focus on specific objectives, t he wealth of knowledge, experience and ability to c ross-fertilize ideas may give the coalition a thought leadership role. Strong voice of the cancer community has led to initiatives like t he Europe's l eading cancer plan, as well as the y outh cancer mission. And the cancer policy area is vast and complex. Similarly to brain health, the need to have a strategic framework for policy advocacy is critical to achieve common goals. Fragmentation does not pay, to the contrary. Joining forces across expert groups to raise awareness on the burden of brain disorders on individuals and society will mobilize p olicymakers. I believe that promoting brain health and tackling brain disorders should be a top priority in Europe and globally in the context of the EU for health plan brain health needs to take a center stage to foster innovation access to care and ultimately improve health outcomes for all those living with a brain disorder.
Nina Renshaw:Hello, this is Nina Renshaw from the NCD Alliance. Um, we're a civil society organization of around a thousand separate organizations worldwide all working and campaigning for the rights of people living with non-communicable diseases or chronic diseases and both on prevention and access to care. And we're really delighted to count EFNA as one of our many members. Um, we're just over 10 years old as an organization. And one of the key things that we've learned in our experience is the importance of speaking with one voice, uh, and uniting across the community when we work together as a community with so many voices and so so much expertise behind us, we're that much stronger for it. Um, what's particularly important to NCD Alliance is to include the voices of people living with NCDs in our advocacy, they're really at the heart of everything we do, um, they drive all of our work with their experience and their expertise and their demands. Across NCDs. Similar for, for neurology, we're looking at similar solutions or similar, similar causes. And at the heart of that really is, uh, the right to universal health coverage and universal health care. So congratulations from NCD Alliance, uh, to you all on the one neurology initiative, we're really looking forward to working even more with you and hearing much more from the voices of neurology. See you soon,
Sam Pauly:Some great messages there. Well, let me bring our guests back in. We're talking with Joke Jaarsma president of EFNA, Professor Claudio Bassetti,, president of the E AN and professor V ladimir Hachinski. Joke. I know th at s omething that is a bit of an ongoing debate is where ne urology s hould be positioned within broader discussions on brain health. How would you define brain health and how do these concepts fit together?
Joke Jaarsma :The discussion about brain health is important and ongoing worldwide. For me, I can only bring my European perspective here, which makes the distinction between neurology and mental health. So it it's important to clearly define what exactly is meant by brain health. To that I would like to add one point. I think that this discussion should not be about putting one against the other, but rather about making sure that both are allocated the resources and priorities that they deserve and that they are not lost because of different interpretation or a vague terminology.
Sam Pauly:Claudio, where do you feel neurology should be positioned within the broader discussion on brain health?
Vladimir Hachinski:The concept of brain health includes several aspects. One aspect that I like to stress much in my communication is the concept that we can do a lot to prevent neurological diseases. And this can be done from early on in childhood, up to adult life. And even in late life, we can do much to prevent or counteract the appearance of neurological diseases; a healthy diet, protection towards head trauma, exercise, physical exercise, or cognitive exercise a t all stages of life. And eventually also, u m, sleep, u h, as, as a state where our health is promoted. And unfortunately in our society, we have a progressive decrease in sleep duration and unfortunately, often o f sleep quality. So we have a lot we can do to promote our health in the brain and eventually t o prevent neurological diseases. And once we have a brain damage, u m, the, u h, responsibility to rehabilitate the patient is, is a very complex one. So we should do a l ot to prevent diseases.
Sam Pauly:and Vladimir, would you like to come in on that? Where do you feel neurology should be positioned within these broader discussions on brain health,
Vladimir Hachinski:At the very center. And I think we should emphasize the fact not something that can go wrong, but how can you optimize the use of your brain? If you want to enjoy your brain, your brain isn't all about intellect. It's about emotion. It's about sociability. So we have to sort of say exercise your brain, but exercise o r cognitively, emotionally, and also in a social way. And then in terms of sort of saying, well, we don't want to scare people, but I think we have to emphasize that, you know, the brain is the only major organ that c annot be transplanted. This is the one chance you have. It's like an investment, a little bit of damage. Now will accumulate with time as your health declines. So I do think that, you know, this idea one brain express brain health, a nd thethere'll never be a perfect definition. And that definition w ill vary according to culture, according to age, according to the generation mental health and brain health a re the same thing. So I think we have to continue to move in this unitary way.
Sam Pauly:Joke, Given all the discussions you've just had on brain health. Well, how do you think this fits in with the one neurology initiative? Where neurology is positioned within brain health?
Joke Jaarsma :Recently, somebody said to me, neurology is the most important profession in medicine, and I can only agree. And I think it's true because we are dealing with Our brain, our most vital organ. So the neurologist and the neuroscientists who are studying our brain, um, they all belong within this campaign. And, and I cannot stress enough how important this is.
Sam Pauly:Claudio?
Claudio Bassetti :Most people in the world if asked, what is the most important organ you have, they would say the brain. So now the second question is who takes care of brains? These are neurologists. So the consequence is we need to support the efforts of neurologists, neurological working forces, in cluding n ursing rehabilitation, logopedists, Ergo the rapists. A nd the consequence is we need to invest for our bra ins. S o we need to invest in those that take care of these brains.
Vladimir Hachinski:And I think that even a more important role than being a neurologist is making sure that many other health professionals learn enough about it to contribute to brain health.
Sam Pauly:How important is is to look at the global regional national approaches Claudio?
Claudio Bassetti:We have been looking in recent years, uh, closer to the European, uh, reality. And we have, uh, realized the frequency of neurological diseases.
Claudio Bassetti :Varies a lot from one country to the other. This may be due to multiple factors, but we have learned also that there are great differences in the distribution of neurological working force. So I do think that we need to know more to know also where we have to invest more to guarantee sufficient care for neurological patients. It's not just West, East, North, South. We do see also other differences and we need to learn more about them to help them. Let's say, as European society to support a specific regional authority stakeholder societies, to get the stronger voice,
Joke Jaarsma :The work, which is dWHO one by the WHO determines to a large extent what happens in the rest of the world. And we have seen, uh, in, at WHO, the birth of the brain health unit at headquarters, which covers neurodevelopmental and neurodegenerative disorders, u h, mental health is dealt with separately, but this is important for neurology and at EFNA we are in i n close contact w ith the WHO And we have also seen that, u m, when we speak of global work, we see totally different worlds. Speaking about Africa or South America, that's, that's a totally different world. So we have to, we have to realize that the work in these various areas will differ as well. But in the end, I think that's the plan that we are now b uilding is also a framework t hat's eventually maybe adapted, by other parts of the world.
Sam Pauly:And Vladimir, what would you say the importance of global....
Vladimir Hachinski:Three reasons Well, one of them is what Joke just said, and that is that because the problems that certain commonalities across the world, but also differences, one, one size does not fit all. An d i n part it has to do also what is most effective? I'll give an example fr om C a nada, for example, in the city where I live high blood pressure is very well controlled, but in another part of Canada and Northern Ontario, it's not controlled. So clearly a solution for my region is different for one of t he North. And then the second thing is that most of what we know about brain disorders and by the way, they are now the leading causes of disability adjusted life years, in other words, a c ombination of mortality and disability. So that's, you know, it's a growing importance, but the point there is that we, most of what we know about neurological disorders comes from mainly from the literature an d p ublications and research of W estern Europe and North America, Japan, Australia, most of the world is non-represented those countries. And th ey're p robably also the genetic variation, different causes that could enrich what we know and at the same time help those people. And then the final reason is that it has to be cost-effective because in all countries there's always a competition for funds an d w e have to make the case that investing in brain health is a good investment.
Monica di Luca - STING:Hi, I'm Monica from the European brain council, and you're listening to the one voice for neurology podcast.
Sam Pauly:What opportunities do you see Claudio, for neurology and brain health in the future?
Claudio Bassetti:I see a great opportunity if we increase the awareness and the knowledge and with knowledge, u m, I want to say that we do have to perform further homework, so we need to get better about certain topics that you also raised today. So we need to invest as scientific societies, as patient societies in increasing the knowledge about the situation. I do see the great potential that we can move things. We are on the edge
Claudio Bassetti :Of more and more treatments and not only more and more diagnosis, good diagnosis. And, and we need to be able to be part of this process that will improve eventually the faith and the lives of our patients.
Sam Pauly :What would you say are your main goals? What would you really love the one-year neurology initiative to achieve? What are your hopes and goals Claudio?
Claudio Bassetti :Well, my hope is that, um, we can share a vision. We can share, uh, this urge of working together and despite the need. And I come back to a concept that I brought before of super specialization of fragmentation. We need to understand that certain goals, certain activities need a work together. And in that sense, the interdisciplinary the multidisciplinary, the concept of joining forces. I think it's my biggest hope, uh, in this, uh, in this initiative,
Sam Pauly :Let me come back to you Vladimir?
Claudio Bassetti :Well, I think it can achieve the most once we begin to have a unified, theme, the problem at the moment now is that we don't have investments in the same proportion as the magnitude of the problem or the potential solutions. And I think if, if all governments and all jurisdiction recognize that brain health is the ultimate wealth, maybe we can begin investing in the way that it makes sense.
Sam Pauly :And what would your message if you had a message Joke to finish on to the global ne urological c ommunity, what would that be?
Joke Jaarsma :Millions of people with neurological disorders are waiting for breakthroughs in their treatment, thanks to new techniques and development. These may be insights, but that will require big steps, substantial investments, and an integrated approach by all parties concerned.
Sam Pauly:Claudio, do you have a message for the global neurological community?
Claudio Bassetti :Yes. Uh, join us work with us. We have an important goal and we need all of you
Sam Pauly:Well, that's all that we have time for on today's episode, the first of our series of seven o n one voice for neurology, thank you to all of our guests for sharing their experiences and their insightful views today. And don't forget. We'd love you to join the conversation on Twitter and share your voice, or even better share a video with us. You'll find us at, at one neurology underscore using the hashtag one neurology. We look forward to chatting there, do join us again for our next episode, episode two, when we'll be discussing why now is the time to act for neurology. Until then, thank you for listening and b uh-bye. thank you for listening to the one voice for neurology podcast produced on
Speaker 1:Behalf of the European Federation of neurological associations and the European Academy of neurology, the umbrella organizations, representing patient organizations and neurologists in Europe with active contribution from the European brain council produced and hosted by Sam Pauly.[inaudible].