In our final episode we look ahead and ask what is now needed at International, European and national level.
We’ll be talking with Dr Tarun Dua, from the World Health Organisation Brain Health Unit and hearing some success stories from Iceland and Norway.
We’ll be discussing the Global Action Plan and hear what’s next for the OneNeurology Initiative and how people can get involved.
www.oneneurology.net/podcast
In our final episode we look ahead and ask what is now needed at International, European and national level.
We’ll be talking with Dr Tarun Dua, from the World Health Organisation Brain Health Unit and hearing some success stories from Iceland and Norway.
We’ll be discussing the Global Action Plan and hear what’s next for the OneNeurology Initiative and how people can get involved.
www.oneneurology.net/podcast
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 can 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 seven entitled what role for policymakers. Thank you for joining us in our final episode of this special series of podcasts in which we've been exploring the new OneNeurology initiative across seven daily episodes in our previous episodes across the six days we've discussed serving and supporting people living with neurological disorders, treatment, innovation care, and the importance of a one neurology approach. We've also hear personal accounts from a wide range of people living with different neurological disorders. It's been quite a journey and for our last stop today, we're looking very much forward and asking what's needed at an international, European and national level. We'll be talking with Dr. Tarun Dua from the World Health Organization Brain Health Unit, and hearing some success stories from Iceland and Norway. Later in the podcast, we'll hear about the next steps for the OneNeruology initiative, as well as hearing messages for the future of the initiative, from some important voices in the neurology community. Now though, let me welcome our guests for our first interview. I'm delighted to be joined by Dr. Tarun Dua from the World Health Organization's Brain Health Unit, D r. Anette Storstein, President of the Norwegian Brain Council and Dr. Stefán Yngvason who specializes in rehabilitation medicine and is currently medical director at I celand's largest rehabilitation facility. Thank you all for joining us i n a very warm welcome to you all. Tarun, let me start by asking you about the 10 year ne urology g lobal action plan. What is it? And what's being done, what work is being done to develop it,
Dr Tarun Dua :As we all know, neurological disorders are the leading cause of disability adjusted life year and second leading cause of death, much more needs to be done to tackle this burden, especially because 70% of this burden is in low and m iddle i ncome countries and where you have insufficient resources. So for example, if w e look at a condition like epilepsy, where 70% of people can be s eizure-free, if they r eceived treatment, the treatment gap is around 75% in l ow i ncome countries. And one of the reason is a lack of resources or i nequity in distribution of resources. All of this means that we need to take integrated action, concerted action by different stakeholders. And with this spirit, the World Health Assembly, in November 2020, asked the WHO Secretariat to develop this global action plan on neurological disorders. Now, what are the next steps? A d iscussion paper by WHO secretariat on which inputs will be received by various stakeholders, such as countries, u h, c ivil society partners, private sector, academic partners, and on the feedback that we did re ceive a s f irst draft of the action plan will be developed, which we will open again for receiving second round of feedback and which will then go back to the World Health Assembly for their consideration.
Sam Pauly:How important from your perspective is it for the WHO to integrate neurology into strategic priorities?
Dr Tarun Dua :We know that neurological disorders share common risk factors with many other conditions, and they are linked to many other areas or disciplines such as non-communicable diseases, infectious diseases, environmental health, mental health, violence, injuries, social determinants of health, et cetera. And therefore we know that we need to take an integrated approach to neurological care, for example, stroke, which is closely linked to the non-communicable diseases. The NCD programs looking at meningitis, which is linked to the vaccination programs. As we are looking at the life course, brain health and development is linked to maternal child health programs. If you look at older adults and dementia, this is very much needs to be integrated with aging programs. In addition, there are horizontal strategies such as universal health coverage and primary health care that provides an opportunity to integrate all of these.
Sam Pauly:How important a moment is this? Do you think it's a watershed moment?
Dr Tarun Dua :I think this is an extremely important moment in the field of neurology. This is the first action plan that WHO is developing. This is going to come out with a global framework, global set of actions, global targets, global accountability mechanisms. It provides us an opportunity to bring neurology under one umbrella.
Sam Pauly:And how do you see the action plan filtering down to national levels
Dr Tarun Dua :The action plan has concrete actions for different stakeholders. What member States can do, what civil society partners can do what and what the WHO will be doing to support countries. I mentioned about the targets and indicators, and they are extremely important to ensure monitoring and accountability. So I think that's very important, but t hat what c annot get measured, doesn't get done. And I think this is important in, in a, in a sense that this i s g iving the prioritization and awareness about neurological disorders, not only at a global level, but at national level.
Sam Pauly:Well, let's talk to some people from the national level now, because we've got two representatives here from national level. Anette let me come to you. First, Norway has developed Europe's first brain plan. What does that mean? And how did it come about?
Dr Anette Storstein, :Well Sam, I think it all started with the year or the brain in 2015, because this raised the awareness of the brain. And at this time there were patients organizations talking together and realizing that they had same challenges concerning the health services to people with brain disease. And they started understanding that they should work together. So they started their lobby work with the politicians and patients' organizations are great at lobby work. And what I think was very crucial was that they joined forces with us, the professionals, withthe Norwegain neurological association, and the Norwegian Brain Council. So we all joined forces. And then we raised this issue at every level that we could access. And finally, we got the attention of the minister of health and the prime minister. And this was the clue of course. And the result was that they decided Norway needed a report on how the current state of affairs was concerning brain health. And the report of course, showed us what we knew, that the brain health services, when not as good as they should be. And that was the start of the work with a brain strategy. So I think the lobby work and the Alliance here that was actually quite crucial
Sam Pauly:Coming from that state of play at the study, where, where you found that the situation wasn't as it should be, what changes has that led to? Has there been an improvement?
Dr Anette Storstein, :Yes, I would definitely say so, although we are still at work because this is a six year long initiative. So now we are halfway and I think first it has raised the general awareness of brain issues in the political environments and in the general population. And second, it has led to a number of different concrete initiatives, for instance, a plan to increase clinical studies for brain disease and establishing a national center for clinical studies and also a number of other initiatives like improving of general rehabilitation services, a great plan that is now coming about; how to improve the care to headache patients and so on. So there are very concrete initiatives going on the whole time. And the third issue, which I think is very important is that this has increased the awareness among professionals that we have to work together. We have to make networks and raise the competence in different fields of medical specialties. And we have to work with the patients organisations. So it's been a kind of general awareness r aising that is not the least important factor. I think.
Sam Pauly:Stefan, I'll come to you to hear about Iceland in just a moment. But first I just wanted to remind our listeners that we'd love them to join in with the discussion on Twitter, where they can find us at,@oneneurology_ the hashtag#oneneurology. We hope you'll join us there. So Stefan, let m e c ome to you. What's happening in Iceland then? Is it the same as i n Norway? And why do you think Iceland is championing neurology?
Dr Stefán Yngvason:Many reasons. Of course, one of them is that the population is getting older. We have a relatively young population comparing to Europe, but the elder people are growing steadily. And we know that with that will come increased disability and all kinds of problems and the burden of disease must be addressed. So, uh, the government is very well aware that this is something they have to prepare for. As has been said that this is not only about n eurology diseases, but everything that affects the neurology system cerebrovascular disease and so forth. So it's a wide area of interest.
Sam Pauly:And what's the actual situation at the moment. Then in Iceland, in terms of what activities are taking place?
Dr Stefán Yngvason:There've been different kinds of things. First of all, I would like to say that there have been made action plans for Alzheimer's and also an action plan for increasing rehabilitation measures, and education, and so forth, not the least in the primary health care sector. So there's awareness we need to do this on a great scale throughout the community.
Sam Pauly:And, and what's the role that the government is playing within that?
Dr Stefán Yngvason:Well, they are the policy makers, the good things you can say about them is they listen. There are many participants in this, both the professionals and laymen who have a word in this. And I would like to mention one person,(name's person) who has been preaching, uh, methods for during SCI[Spinal Cord Injury] for a long time. Of course we're not there, but this has led to that, uh, world health organization embraced this around the year 2000 and put it in the forefront. And then the, uh, government has been working in the Nordic council of ministers for almost half a century. And this, uh, cooperation is very, very important for a small country, that has realized that progress is not made if you don't have international connections. The council o f Nordic ministers has done many good things, and they have also taken this area of spinal cord injury into their arms and promoted that.00.
Sam Pauly:Stefan, you said they listen, why do you think they listen? What, uh, what's the difference there?
Dr Stefán Yngvason:First of all, it's a very small community. And it's very important for everyone that we speak out. And the media today are very open and people are very open to come forward with their problems, discuss the seriousness of their disability and how they cope with it and so forth. There is an awareness in the community or all the things that can happen to you. Politicians have embraced that and made commitments. You can do things better
Sam Pauly:Anette, is there anything you'd like to add to that from the Norwegian perspective?
Dr Anette Storstein:I think Stefan has a very good point in the impact of the burden of disease because brain disease is really a social economy. It affects national budgets, and this is important for the future state of the nation. And secondly, I think that allying patients, professionals and scientists is very, very powerful. It is not always the case, but the patients, they have the ear of the politicians. So if you really can show them that we move together, we are of the same opinion, we want brain healthcare to improve. Then that is very powerful, I think, and it's, it's very difficult to look away from such a united platform.
Sam Pauly:Tarun, let me bring you back in, what can we be learning from countries like Norway and Iceland?
Dr Tarun Dua :I would say this is the one point is the leadership role that countries like Norway and Iceland are playing in this field with the establishment of brain health strategy. And I think this is extremely important, uh, as you know, that WHO as part of the transformation process this year, a new unit on brain health has been established. So it's kind of getting the brain health, for neurological disorders out of the shadows. Second point, I just want to emphasize this kind of advocacy and partnership between people who have neurological disorders, the patients and their families and the professionals and the scientists. And I think that's, that's the second lesson learned from, uh, countries like Norway and Iceland.
Sam Pauly:I was interested to hear Stefan talking about how people are open to talking about their neurological disorders, because actually throughout the series, we've heard a lot about stigma, why is that less of an issue Stefan, do you think in a country like Iceland?
Dr Stefán Yngvason:It was a big issue, but things have changed with all the social media, the way people think has changed. So they, they come out open with so many things that they wouldn't have done before.
Sam Pauly:And Anette, is that the same in Norway.
Dr Anette Storstein, :Yeah, I think so. And I think it's important to find the politicians who have a personal investment in brain health and after all brain disease is so very common that you have to find someone who is really eager to invest politically, because this is important to them.
Sam Pauly:Tarun, let me come to you, the EU, co-sponsored the resolution leading to the neurology global action plan. Does this mean that they recognize the importance of addressing neurology then?
Dr Tarun Dua :I would say this global action plan and recognition and the resolution is just a beginning. It's a very long road. And, uh, stigma and discrimination, they are still major issues in many parts of the world. I think we need much more action at national level, but we also need much more coordination and collaboration that EU can actually be supporting other countries across the world to do in terms of investment, in terms of resources, in building capacity. I think there are huge needs across the world in this area.
Sam Pauly:Let me ask you all, how can we position one neurology within broader discussions on brain health, Anette, what, what do you think?
Speaker 5:Neurological disease is a core issue in brain health? I think it's important that we advocate that the brain is a whole, because neurological disorders, exhibit psychiatric symptoms and vice-versa and rehabilitation measures, pediatric patients, spinal cord injury, it's all a whole. And considering the brain as a whole is something that is supported by science. It's moving in this direction. So we simply have to push this issue that it's all about the brain and the nervous system.
Sam Pauly:Stefan, would you agree with that?
Dr Stefán Yngvason:Yeah, absolutely. What I think is most important is that we increase the awareness. If we do that and we get people to sympathize with what we want to do, then the money will flow. That's the thing about it. You know, you'll have to finance everything you do, and you have to have a broad consensus in the society that this is what we will do with our money
Sam Pauly:Do you think, in terms of neurology, that, that it's often focused on the brain and forgets about the spinal cord and the other elements?
Dr Stefán Yngvason:Absolutely. You can understand that very easily because the brain is affected more often than the spinal cord may be. We all know that the consequences are drastic, often happen to very young people, you know,
Sam Pauly:Tarun, what would you add? How can we position one neurology within that broader discussion on brain health?
Dr Tarun Dua :I think there's a huge overlap between what we see as the neurology or neurological disorders and what we see as a brain health. In my mind, I look at these as Venn diagrams with substantial overlaps. So for example, when you're thinking about the brain health, you don't think about spinal cord, but I believe these are artificial boundaries because we know there are so many comorbidities. And if you look back in terms of promoting good health, good brain health, this has importance for a range of other outcomes. And when we look at the prevention, they share so many common risk factors. So I think taking that angle of a public health approach and being a person centered approach, that would be a good way forward in terms of overcoming some of these scientific discussions in public health, we will look at things from a broader issue.
Sam Pauly:Let me finish by asking you all what your hopes for the futures are really. What do you want to see the global action plan achieve and for Stefan and Anette, is there still an impact that that can have for you both in Iceland and Norway? Stefan, let me ask you first. I.
Dr Stefán Yngvason:I would like to progress in the way we've been doing. And I wanted to mention the Nordic xxxxxxxx credentialing database, which is situated in Trondheim and spearheaded by them, it involves Iceland, Norway, and part of Sweden. And we hope that all the Nordic countries will h op on this wagon you know. This is a quality issue, and it's very important that we think about the quality of what we do, and we measure what we do so we can improve it. So this is, a fruit of, u h, u h, c ooperation between countries, which I think, u h, m any others could launch something of. Cooperation is very important because we learn from each other. We live in different societies with different resources, but th e basic needs of the people are all the same. So we need to interchange these and re alize the possibilities we have to help people with disabilities.
Sam Pauly:Anette, would you like to add anything to that?
Dr Anette Storstein:I think what I would really like is that prevention of brain disease moves upfront, because we can prevent a number of very important brain diseases. And we can also prevent comorbidities and complications in patients who already have brain disease. And we have to think of these diseases as potentially lifelong. So when we treat the patient, we should invest in the next 10, 20, and 30 years. And that is very important to me. And of course, there's so much happening in terms of therapy and so much exciting moving up. So I look very much forward to have the therapeutic progress translated into real progress for the patients and their lives.
Sam Pauly:And Tarun let me finish with you, what's your vision for the global action plan?
Dr Tarun Dua :Just to build on what Anette and S tefan earlier said, it is for me, i t i s about brain health is promoted and protected, that neurological disorders are prevented. People with these disorders and their families are provided all the care that is required and this requires huge commitments, prioritization by everybody and actions that need to be undertaken by all stakeholders. And that includes all of us actually,
Sam Pauly:Well, we'll have to leave it there, but thank you all so much for joining us and for such an interesting and insightful discussion. Thank you. Now all through this series of podcasts, we've been inviting members of the neurological community to leave messages on our one voice for neurology podcast answerphone. Today, we invited people who've already taken part in the series to leave a message about what they hope the initiative could achieve, or their message for po licy ma kers. Let's have a listen.
One Voice for Neurology Podcast Answerphone:Hello, you've reached the voicemail of the One Voice for Neurology Podcast, please leave your message after the tone.
Prof Gunther Deuschl:My name is Gunther Deuschl, I'm a neurologist from Germany working for the European Academy of neurology. My wish is that the one neurology initiative really helps to, um, foster neurology as an important part of healthcare, um, uh, in the world. Um, and particularly in Europe. And, um, I hope that the policy makers are seeing this initiative as, as a possibility to interact with the people who are knowledgeable about neurology.
Prof Vladimir Hachinski:I'm professor Vladimir Hachinksi from the university of Western Ontario, C anada. Our brains represent the three most valuable t hree l bs in the universe. We should develop it, cherish it protect it, treat it to the OneNeurology initiative so that we can have better brains for a better world. Th ank you.
Prof William Carroll:Bill Carrolls, my name I'm the president of the World Federation of Neurology. We have as ou r m ission and goal to raise awareness of the importance of brain health and for the provision of quality neurological care globally. I do hope that policymakers do see that these disorders are posing and will pose a great threat in the future. If one neurology can raise the visibility of this problem, then I think it will have succeeded at least part of its goal. If po licymakers r ecognize the enormous amount of good will there exists within the neurological fraternity and the keenness, the alacrity with which neurologists w a nt t o see this combined action, then they will be assured of several successes. I'm sure. Thank you.
STING :I'm Hariklia Proios acting as president of SAFE and thank you, you're listening to one voice for neurology podcast.
Sam Pauly:Now before we finish this series, we wanted to take stock of what we've learned and to look ahead to the next steps. To help us do that, I'm so pleased to be joined by Donna W alsh, executive director of EFNA, the European Federation of Neurological Associations and Alexandra Heumber Pe rry, a consultant specializing in strategy engagement and patient advocacy wh o s upported EFNA in developing the strategy leading to the on e n eurology initiative. Many thanks to you both for joining us, and a very warm welcome to you.
Donna Walsh:Thanks, happy to be here.
Alexandra Heumber Perry :Thanks for the invitation.
Sam Pauly:Well, Donna, let me start with you because we heard from you right at the beginning of our series in episode one, we've had such an incredible lineup of people joining us and talking with us, it's difficult. I know to summarize seven episodes in a few words, but what do you think we've learned from across the series?
Donna Walsh:I think what we've seen across the series, Sam is that really the time for action on neurology is now. In every episode, we've heard about the burden of neurology as a whole, but also across many of the different neurological disorders and for the various stakeholders working in the field. I think what we've also seen is that this is a really complex problem, and we have many diverse and varied challenges. We have many diverse and varied solutions and we have different pictures across the world. But I think what we've also seen is that there's definitely value in working together. There is definitely value in taking an integrated approach, which looks at the synergies and the cross cutting issues, because clearly there are many, and clearly there's a lot of opportunity to collaborate in addressing some of these.
Sam Pauly:Alex, would you agree with what Donna said and, and where do we go from here?
Alexandra Heumber Perry :I fully agree. I think having a global policy framework will, for neurological disorder, which doesn't exist n ow so far, will definitely h elp the community to address the challenges that we heard and p articularly to benefit from the adoption of efficient solutions. We saw for similar other d isease like cancer, HIV and other non-c ommunicable d isease, overall, the benefit of having a policy framework because then country can really implement solution on the ground. And this is where the impact on pa tients h appened.
Sam Pauly:Donna, how does the global action plan, how does that fit with the one neurology initiative?
Donna Walsh:So the global action plan spun out of a resolution by the World Health Assembly back in November, uh, 2020. And the idea was to look at global actions in epilepsy and other neurological disorders. And to do this, the global action plan will essentially be a ten year intersectoral plan, and it will be a framework for action across the neurological disorders and across the world. Now we realized that if we wanted to be effective in terms of replying to this consultation on the global action plan that we needed to come together as a community, we needed to look at the common challenges, the common solutions and the common asks, and to speak with one voice. And traditionally in the area of neurology, we've often been fragmented., we've worked in silos. In some cases we've been competitive when it comes to resources and prioritization. And obviously if we're looking at a global framework that addresses all neurological disorders in all parts of the world, then we can't afford to work that way any longer. And as Alex mentioned, we need to be more effective. We need to be more efficient in the way we work. And so the idea behind the one neurology initiative, was to show how and why neurological disorders can and should be addressed together, but also to look at things from more of an advocacy and policy perspective, and to make sure that we can really come up with a set of key messages and a set of central asks that will really add value to the disease specific work. And will create this sort of favorable policy environment for us to address neurology collectively.
Sam Pauly:Alex, is there anything you'd like to add about how the global action plan came about?
Alexandra Heumber Perry :Yes, I actually, I would like to add that originally it was a plan that was only focusing on epilepsy. So this is the patient group on epilepsy that really was working on this with the WHO and this is the member state that had to, uh, take the opportunity to broaden the scope of this action plan, to look at group of disease and try to address the common challenges and common solutions. So today we have this opportunity thanks to the epilepsy group that originally did an amazing work at WHO level.
Donna Walsh:Just to add to what Alex said as well from my side, I think we need to be clear that this is not about replacing epilepsy, but actually adding in to the mix, other neurological disorders and thinking about the synergies and the cross-cutting issues, and really bringing benefit to the community as a whole.
Sam Pauly:Can you give us a taste of what it could really look like then what you'd hope it would look like
Donna Walsh:Right now, the discussion paper on the global action plan is available on the WHO website. So people can go and have a look and they will see the direction that WHO are proposing for this plan. We will then have opportunity to consult, um, with the community and to ensure that we address the areas that really need to be included in that plan. And we've heard some of these things, I think, across the episodes that we've had already, some of these common challenges, like stigma, prevention, access health, workforce research, and it will be important for us to ensure that all of those things are integrated into that framework, but it will be a framework. And I think what we need to then ensure is that we have buy-in from national governments, from member States for this plan, that it is resourced, that it is prioritized and that it is implemented at a country level. And that might look very different from one country to the next, from one region to the next. But at least the plan will provide the framework for action. And we'll identify some of the key areas where we need to make progress.
Sam Pauly:And Alex, what impact do you think that global framework can have in terms of examples at regional and national levels
Alexandra Heumber Perry :In term of process, every member state, will have to report to the World Health Assembly about the progress of the implementation of the GAP. So I know we already quite few step ahead, but i t just to give a sense of what, what it really means to have something a dded to that global level, because, you know, sometimes we can have nice t exts, a nice set of measures that are adopted here in Geneva, and then nothing really happens on the ground. So it will have an impact if the community in the ground at national level and regional level can really advocate at their level with p olicy m akers, because some members they have to prioritize some c ountries don't have a huge budget for health. Or even if they have, given the situation today with the pandemic, they will have to make choice. So it will be still important for the community to really make the case fo r n e urology. Even if we have that adopted here at Geneva, it's only the beginning. So the impact would be that national plan on the neurology would be adopted in many, many countries. It's not the case today, except maybe for Norway and Iceland, like we heard, but it would be important that we see that when we will have national plan on neurology or when we will have neurology integrated into other national plan, like national plan o n n oncommunicable disease or national plan o n universal health coverage when this will happen, then we will, we could say that the global action plan a dopted here would have had an impact.
Sam Pauly:Donna. It all sounds very exciting. Would you say this is a watershed moment?
Donna Walsh:I would hope so. Um, traditionally in the past neurology really has been an overlooked field. And I think that has been down to the fact that we have had this fragmentation in the community. So in some countries you may have seen efforts on Parkinson's disease or Alzheimer's or epilepsy, for example, but never really looking at neurology as a whole. And thinking about developing a comprehensive, coordinated, integrated response. Um, as Alex mentioned, we've had a real push in the area of noncommunicable diseases. And back in 2018, neurology alongside mental health were added to that priority list of NCDs. And I think that really started the ball rolling. And it led to this moment where we are now seeing neurology being prioritized in its own right. So I think it's definitely a watershed moment, but as Alex said, we really need to optimize this, now we need to leverage this, u m, at all levels and in all regions of the world, because otherwise it's a nice document that will sit on a shelf in Geneva, but it may not bring about this positive change that we want to see for neurology. And I think we have been calling for a number of years for neurology to be explicitly mentioned, but now it's time I think to hold those decision-makers accountable. So that, that is actually l eading to action. And as I say, it's not just, you know, a nice document that has been published for the community, but i t, we really l everage it for positive change and for progress.
Sam Pauly:Let's just take a quick break because as you know, throughout the series, we've been running a very busy messaging service where we've invited different stakeholders from across the neurology community to leave us messages on a whole range of topics. And today we've asked a few leading voices that we've heard already in this series to tell us their message for policy makers and their hope for the future. Let's have a listen.
One Voice for Neurology Podcast Answerphone:Hi, I am Claudio Bassetti, professor of neurology at the university of Bern, Switzerland, and President of the European Academy of Neurology. My hope is that the one neurology initiative will raise the awareness about the frequency of neurological diseases, the impact of this group of diseases with the final goal of getting more support for research for care and for rehabilitation eventually to improve the lives of our patients.
Joke Jaarsma :Hi, I am Joke Jaarsma,[EFNA] t he One Neurology Initiative is there for a purpose. The broader view on neurological disorders that this campaign may bring about w ill have a greater chance of more knowledge and more possibilities, possibilities that millions of patients with a neurological condition are waiting for.
Prof Monica di Luca:Hi, I'm Monica Di Luca from European Brain Council. I strongly believe that we need to raise awareness on the impact of brain disease for our society on the importance of reaching a status of brain health for the society as a whole, we need to highlight the importance of innovation in the brain space. We need to highlight the importance for continuous support for research in the area of brain research has a whole, and this is fundamental to reach the necessary advancement that we need to curb the numbers of patients affected by brain disorders all over the world, not only in Europe. I'm absolutely enthusiastic about one neurology initiative, and I'm sure that it will be successful in this ambitious goal.
Sam Pauly:Donna, so much support there in those messages, what's your response to t hat?
Donna Walsh:It's really heartening. I think, because we have really been trying as EFNA to bring the voices together for so many years in our work in Europe. And now to see that this is starting to come to fruition, not just in Europe, but actually at a global level to really have the interest and the energy and the enthusiasm for these really key opinion leaders in their field. I think gives me a lot of hope that we are moving in the right direction, that we have the buy-in for the right people and that, you know, together at last, maybe we can make neurology, the global health priority that it should be.
Sam Pauly:Alex. Did you want to add anything to that?
Alexandra Heumber Perry :When we heard those messages? I think I'm personally very grateful to be involved in helping this community to make the case. I think everyone probably knows someone in their family or social network that suffer from a neurological disorder. So to me it makes my work even more meaningful. And when I see also a community that's really start to come together to make their case at such level, it gives a lot of boost to continue to support them. I think all community must come together and really fight for their rights.
Sam Pauly:What are the real benefits then, do you think of an Alliance? We heard people talking from an Alliance perspective. What're the benefits of an Alliance in a few words?
Donna Walsh:I think that the benefits of Alliance is that it's a one stop shop for policymakers and decision makers. So in the past these policy makers and decision makers, if they wanted to hear the voice of the neurology community, they might need to speak to 20, 30, 40 different organizations. And they might hear 20, 30, 40 different perspectives on what the common challenges and solutions are. And that makes it difficult to have a real impact on policymaking because it's a fragmented set of responses and the policymakers, and decision-makers, can't really identify what needs to be prioritized, what needs to be resourced, what needs to be allocated prominence. So I think for me, the benefit of the Alliance is that we come together, we agree on some of the central elements that we feel are important from a public health perspective. And then together we can advocate for those things really to be addressed. And I think what's really important to reiterate again, is that this is not taking away from disease specific advocacy. This is really adding value, providing a favorable policy environment and a framework in which that disease specific advocacy can actually be strengthened. We can be more effective together. We can be more efficient, we can share resources. And I think that is really the key of the Alliance that we can come together where and how it's important. Um, but we can also continue to work individually as well, but really leveraging and optimizing the Alliance
Sam Pauly:And Alex, how important is community within all of that?
Alexandra Heumber Perry :The community has to share the best practice, the best intervention, because what our policy makers are looking at now with this global action plan. But even, beyond the global action plan, it's cost-effective measure, they need to prioritize, they need to have the cost effective measure. So for community of neurological disorder, what is cost-effective measures? What does it mean? Which one are we going to adopt? And maybe a country will adopt this one, but another country will have to adopt another one because the context is different. And this is where the community has its full role to play. They must say, what are their needs for the policy makers to adopt the best measures? So this global action framework, it's an important one. It will help to provide a framework, but what is essential is that every country will translate that framework according to the needs of their community, according to their own priorities budget, et cetera. And another thing I wanted to add on this is that this one neurology initiative has the potential, by coming together, to scale up solution. I think this is also what is important, what solutions need to be scaled up. And I think the communities have that, in different country, they have it. So how are we going to benefit from sharing that knowledge together?
Sam Pauly:Donna, do you have a message for that community yourself?
Donna Walsh:I think the, the message I have is that I would encourage us to build on what we already have, that we need to come together and we need to work collaboratively to make neurology, a global public health priority. We already have a number of milestones that we can build on. And I think it would be a real shame if we lost the momentum at this point when we're really building up that head of steam to progress. So for me, I think there's a certain urgency. We can't waste time. We need to look at what's in front of us now. We need to make the most of these opportunities to really position neurology. And I think once we get ourselves into that position towards the end of this year and into 2022, then the time will come where we look at the implementation actions, but for now we really have to come together. We have to agree and we have to make sure that neurology as a whole has that framework for action in the years to come
Sam Pauly:And throughout the episodes, we've been asking people to join in on the conversation on Twitter with us. And as a reminder, if you'd like to do that, you can find us at Twitter at,@oneneurology_ and I know we'd really love to hear about what matters to individuals, but are there any other ways, Donna, that you'd like people to get involved?
Donna Walsh:So as Alex was saying earlier, we really need people at the national level to work with us, to hold their governments to account and to make sure that they start to look at this global framework and really develop tangible actions in their countries that will support its implementation. So we'll be looking for people, um, across the world. Uh, but particularly as EFNA, we'll be looking for advocates in Europe to really sign up, to get involved and to work with us as champions or influencers at the national level, we'll be doing a lot of capacity building. We're working on toolkits for people like this. And so my plea would be, if you're listening, if you feel that you would like to get involved, if you've got the connections and the interest at a national level, please do get in touch with us, let us know who you are and what area you're working, maybe your motivation for getting involved. And people can just send us an email to policy@efna.net And we'll make sure that we keep track and we try to work with these troops on the ground to really make positive change in the area of neurology.
Sam Pauly:Wonderful. If anyone missed that email address, I will remind you all before the end of the episode. So you've got time to get a pen. Just finally, Donna Alex it's been such an incredible seven episodes. We've heard so much about the one neurology initiative and so interesting to hear about the global action plan. In a few words, what would you both say your dreams or visions for the initiative are, or where we are in the next few years? Alex, let me come to you first.
Alexandra Heumber Perry :Well, I would like to see that, for example, if we ask a patient in two, three years, was there a change and what has changed the response would be"Yes, definitely. I see an improvement of the management of my disease. I have better access to diagnosis, treatment and care, and there are promising new therapies for rare neurological disorder" for example. And most importantly, um, our needs are better understood and truly considered, I think in a way, this is what is the purpose of our policy work. This is to see, uh, the impact on patient at the end of the day.
Sam Pauly:Donna?
Donna Walsh:I would like to see that the initiative really brings the community together. And that if we ask everybody at the end of this year, was it worthwhile that everybody says, yes, there's real added value in coming together and working collaboratively. I'd also like to see this kind of OneNeurology initiative become almost self-sustaining as EFNA this was something that we kick-started because we felt it was important. And there was no kind of umbrella group similar to EFNA at the global level, but for me, I have no sense of ownership of this initiative. And I would like that we get the buy-in from these different groups across the world to really self sustain the initiative and to move it on into the future. I also want to echo what, what Alex has just said. I think any work we do as part of this initiative, as part of the partnership really has to have a knock-on positive impact in all regions of the world. And I'd like to think that for all those living with a neurological disorder, whatever disorder it is, whatever part of the world they're living in that in the next number of years, they will all have the access to the diagnosis, treatment and care that they need.
Sam Pauly:Well, Donna, Alex, thank you both so much for joining us and those wonderful ambitions. Thank you for sharing those with us. So that brings us to the end of our special set of podcast series One voice for neurology. It's been a busy, insightful and inspiring seven episodes. And I just wanted to thank all of our guests and contributors for taking part throughout the series. I'd also like to thank you too, for listening. I did say that I would remind you about the email address that Donnar just gave out there. So if you would like to find out more about being an advocate, then you can email policy@efna.net. Now don't forget we might've finished the podcast series, but we're also carrying on the discussion still on Twitter, where we'd love to hear what matters most to you. You can join the conversation with us there, share your voice, or even better you can share a video and you'll find us at,@oneneurology_ and you can use the hashtag#oneneurology, and we look forward to chatting with you there. It's been a privilege for me to host this series. And I'd like to wish everyone involved with the one neurology initiative, every success. And I'd really like to wish everyone listening who's living with a neurological disorder, the very best possible health and change for the better. Thank you so much for joining us. Bye-bye Thank you for listening to the One Voice for Neurology Podcast produced on 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.