How can the WHO Global Action Plan be implemented at regional and national levels around the world?
In this episode Sam Pauly and her guests try to answer this question by case studying the region of Europe and discussing how nations can address disparities and inequalities as well as achieve success through collaboration and with EU initiatives like Healthier Together.
How can the WHO Global Action Plan be implemented at regional and national levels around the world?
In this episode Sam Pauly and her guests try to answer this question by case studying the region of Europe and discussing how nations can address disparities and inequalities as well as achieve success through collaboration and with EU initiatives like Healthier Together.
INTRO:
Welcome to the One Voice for Neurology podcast, a series of podcasts exploring why it's time to make neurology a priority, how that can be achieved with a global and 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 are listening to episode 12, Zooming in on Europe.
Sam Pauly:
Welcome back to the One Voice for Neurology podcast, and our third and final episode to mark Brain Awareness week. Thank you so much for listening into us. We are delighted to have you with us. Today, we're going to be case studying one global region to see how the intersectional Global Action Plan can be implemented at regional and national level. Coming up later in the program, we'll be hearing three views from Europe, the Neurological Alliance from England, the European Brain Council, and EFNA to tell us more about the current situation and needs across the continent, both in and out of the EU. We'll also be hearing from Marijeta Mojasevic, a young stroke survivor from Montenegro, and, of course, we'll have more messages on our One Voice for Neurology answerphone looking at the disparities across the Europe, but also hearing from Norway where there's already a national brain plan in place.
But first, to tell us more about the European commission's commitment to addressing neurology, I'm going to be speaking with John Ryan, Deputy Director General and Director of Public Health at the European Commission. John Ryan, thank you so much for being with us today and a very warm welcome to the One Voice for Neurology podcast.
John F. Ryan:
Thank you very much. Great pleasure to join you.
Sam Pauly:
I wonder if we can start with you briefly, please, explaining what the situation of people living with neurological disorders in Europe looks like.
John F. Ryan:
Noncommunicable diseases represent 80% of the disease burden in Europe, so that the large majority of our disease burden on our health systems and citizens. These include things like cancer, cardiovascular disease, diabetes, chronic respiratory diseases, and of course neurological conditions. Of course, in the current context, as many as one third of COVID-19 patients are diagnosed with neurological and psychiatric complications within six months of infection, so this is actually making the situation worse. People with preexisting mental health or neurological disorders are more vulnerable in the case where they have to self-isolate, for example, or separate it from their family for a long time. We've seen a lot of deterioration in patients with neurological disorders because of the specific conditions of COVID. The people who were suffering before are suffering even more at the moment are during the pandemic.
Sam Pauly:
Do you see much variation in the burden and the needs across Europe? Are there any disparities that you see?
John F. Ryan:
Yes. I think one of the striking things in relation to noncommunicable diseases are the huge differences in mortality and morbidity across Europe. Even within countries and within cities, it's all linked to the type of society that you're living in or the type of environment you're living in. A simple thing like exposure to noise might not seem like a major health determinant, in fact, it is major health determinant for all sorts of health conditions. This is of course, linked to poverty. This is how health inequalities build up.
Unemployment is another thing. So if you have several generations of people who have no access to good quality employment, they are likely to have poor nutrition because they're trying to save money. They may live in poorly insulated houses. Their children may not have a tradition of good education, et cetera. So you have one thing building on another, which leads to these longstanding health inequalities. One of our big ambitions in Europe is to reduce these inequalities.
If I might just give one example the idea that everybody should have access to HPV vaccination. We think that it's a fairly basic thing that when we have a vaccine that works, we should try and make it available in an equal way across Europe. That's a simple example where Europe is really leading the way, I would say, setting a target and providing the necessary infrastructure and support. I think the European institutions are really committed and trying to push this concept of a more fair and equal society.
Sam Pauly:
John, I know that the EC is putting in place a number of goals. I also wanted to ask you about the Healthier Together initiative, which is a commitment from the European Commission to address non-communicable diseases, and as part of that, neurology's being recognized as one of the major groups of NCDs. Can you tell us about those goals and the Healthier Together initiative?
John F. Ryan:
80% of our health burden on our health systems and on our citizens is from noncommunicable diseases, including neurological disorders. The commission and the member states subscribe together to achieving the UN Sustainable Development Goals. This is a system of targets, which are in different areas, not only in health, but include gender equality, education, poverty, poverty reduction, and health, and all of these go together. In order to better implement this at the European union level, we've launched what we a Healthier Together initiative, which basically focuses on a number of topics which are major aspects of non-communicable diseases, including neurological disorders and mental health.
At the moment we're developing with the member states concept papers or roadmaps or call them what you want, which are developed with the member states and, importantly, with the stakeholder community, so with the patient groups, with health professionals, everybody can contribute. The idea is that we try and gather as many ideas as possible and try and get as much consensus on the way forward as possible. So it's absolutely not the top down. It's really a bottom up thing where we have identified the main areas of burden and we're working together with the member states and our stakeholders to develop a concept. It's all in prevention; it's all in developing societal and living systems where people avoid getting sick for as long as possible and remain in good health for as long as possible. We're very lucky that most noncommunicable diseases can be prevented.
Sam Pauly:
Just to go back to the Healthier Together initiative, obviously you've spoken about the burden and the sustainable development goals, but how did the initiative come about? Why are you recognizing neurology in this way, and now, really?
John F. Ryan:
Well, we're not recognizing it now; I would say it's been recognized all along and we've invested in a major way in research, for example. All of the investments made by the Horizon Europe program are a good example, I think, of where we've tried to advance knowledge. I think on the public health side, though, what we had in the past was a very dispersed, subject-based initiative. So we had one approach for nutrition, another approach for alcohol, another approach for tobacco, another approach for rare diseases, another approach for health data, and none of these silos were basically communicating.
But the idea is to have a much more integrated approach because, of course, many of these diseases can be prevented and if you don't have a good data collection, then you don't really know where you're supposed to be hitting. If you don't know what the inequalities are, how can you know where to invest? So linking these policies together makes a lot of sense, and I think linking neurological and brain health and mental health issues together with all of these other public health topics makes sense because one is linked to these other.
Sam Pauly:
What difference can this initiative eventually make for people living with neurological disorders?
John F. Ryan:
Well, for people living with neurological disorders, I think it's part of a more general issue of the operation of our health systems. The operation of our health systems has to be done in a way that we try and move as far is possible from treatment of people who are already sick. That has to continue, obviously, but to invest sufficiently upstream in the identification of potential health problems and their prevention.
My first point is that the neurological and mental health communities will benefit because we will try and identify where improvements can be made in early detection-prevention of some of these disorders. Secondly, I think there could be challenges coming down the road in respect of the workforce. We note that the WHO and the European Commission and the OECD have all identified the topic of medical workforce shortages as an issue for the future, as our population gets older, as the demands for better quality health systems go through the population, people want better quality health.
The issue is how do we introduce systems which are more efficient? For example, the idea of having electronic health records to enable information to be more easily shared between different parts of the system if you're a GP, if you're a dentist, if you're a pharmacist, if you're a hospital, the patient should be able to carry that data much more easily so that we can ensure integrated care, quality of care, less medical errors, and all of this will contribute to having a more efficient health system. We're at the moment in the process of developing and making a proposal for digital health, a digital health regulation, in Europe, which will facilitate all of these moves.
Sam Pauly:
What's the process in terms of the development of those and who's involved with that?
John F. Ryan:
It's really important that we have integrated systems, integrated systems which can be shared between the doctor, between the hospital setting, and also other care providers, if there are nurses who are visiting the patient at home, for example. It's also very important to involve the patient in all of this, because we're not creating these digital tools for fun. They're all starting with the patient and the patient is the owner of the data and therefore consent is really important. That's one point.
But secondly, when we're developing these tools, we should bear in mind that there is a digital gap. There is a digital gap among health professionals who have lots and lots of things to do, that we really have to provide tools that are user-friendly for the health professionals, first of all. Secondly, we've got to provide tools that are secure. So you make the initial investment, but you have to keep on investing to keep the things safe. The third issue is, of course, if you are developing these tools, they can also be helpful for the patient themselves in order to follow aspects of their treatment, or to know more about how the disease is being diagnosed and treated.
It's their data, so it's important that these types of tools are also developed in a way that's user-friendly for the health professionals, it's user-friendly for the patients, and user-friendly for the carers. Involving all of these communities in developing those tools is really important.
Sam Pauly:
The plan for [CE's 00:11:11] funding, again, in just a sentence or two, what should players in the field of neurology know about those funds?
John F. Ryan:
I would just firstly mentioned the recovery and resilience fund, which is a way of strengthening our economies and our health systems and our societies after COVID. So it's a new fund, which was created after COVID, and almost 10 billion euros has been spent so far by the member states on reinforcing their health systems, which is a lot of money compared with the type of investment which we had before. I recall that in previous years, the total annual amount of the health program was 65 million euros, and since last year, we have spent almost 10 billion euros in reinforcing our health system. And so, you can see that COVID has been an electro shock to our financial support schemes.
Apart from this general framework of support for recovery and resilience, which also strengthens our health systems, we have the health program. The health program has a budget of 5.3 billion euros over seven years. There we have things like digital health. We have noncommunicable disease initiatives. We have joint actions between the member states, so that the member states and the NGO communities can together in a network work on a particular topic. And then, we have, of course, the research program and the research program also has a substantial budget of 95 billion euros over seven years, but it's not all for health. There's about 10% of that, I think, on health, and therefore it's substantial money. Finally, then, of course, there are specific problems for training.
Sam Pauly:
It's expected that the WHO Intersectional Global Action Plan on epilepsy and other neurological disorders will be adopted in may at the World Health Assembly with a number of targets, of course, for nations to implement themselves. How can the EU help bridge that gap between the global level and the national level with this framework and other measures?
John F. Ryan:
We're very committed to working with the World Health Organization. There are many areas in which we work together, and I would welcome working more closely with the WHO on finding areas of common interest, perhaps not only in the European setting, but also in the world setting. This is one of the aspects we didn't cover so far. We have our European activity on public health, but we also have a very strong interest in development and in helping other parts of the world, are working together with other parts of the world, on issues of common interest. Neurological disorders and noncommunicable diseases in general are a typical topic where we could work together and we have substantial, again, financial instruments, which we can mobilize to help invest in strengthening of health systems and in disease-specific initiatives.
The important thing is to have a common agenda and the WHO is setting targets at the global level. Our targets might need to be more tailored to our own particular circumstance, and even within the 27, there are huge differences within a particular challenge. Some countries have high rates of particular disease, and others may not have the same challenge, so we've really got to dig down as far as possible and find out where we can work together profitably.
Sam Pauly:
Looking ahead in terms of where we'd like to be, what goals would the EC like to see achieved in Europe in terms of specifically neurology?
John F. Ryan:
Well, I think this is one of the ideas that we would try and include in our concept papers, our roadmaps, for Healthier Together, so working within the sustainable development goals, looking at the WHO disease-specific targets. We don't intend to set our own targets at European Union level, because that seems to us to be creating a duplication. If you have a global target, if you have WHO target, why on earth would we want to create a third target? We may have our own internal targets, which might be perhaps aiming to reduce inequalities or aiming to reach a particular point. There, we would really count on organizations such as the One Neurology initiative, the patient groups, the health professionals, to help us in setting those targets, because it's a little bit difficult for us to pick them out of the air. It's much more beneficial, I think, if we have a commonly agreed approach within the international targets, where should we be aiming for, for example, over the next five years.
Speaker 3:
And just finally in one sentence to finish on, what would you say is EC's vision and dream for people living with neurological disorders in Europe?
John F. Ryan:
Well, one word we didn't use so far and that's dignity and stigma, and I think it's one of the aspects of the European Union is also respect for human rights. So I think there needs to be a much stronger awareness of the rights of people with mental health and neurological disorders, respecting their dignity, respecting their human rights. That's not a medical point I'm making, but it's linked to a medical point because, of course, if people are not treated properly, it also translates then somehow into the priority which societies give to those people and to their wellbeing. It has a knock-on effect, I think, in the same way as unemployment or poverty or other factors, the issue of discrimination, stigma, and rights.
I'm really noticing during the COVID outbreak, but also before that, the increasing awareness of mental health issues and wellbeing issues in society at large, and people are much more willing to talk about things than before. So maybe that's an unspoken agenda that we should come back to, but I think it's something which it should be part of our thinking, as well. How do we reinforce people's self esteem and making sure that people's rights are protected?
Sam Pauly:
John, we'll leave it there, but thank you so much for joining us and bringing us up to date with the work at the European Commission. Now let's have a listen to our final audio diary, which has been sent by Marijeta Mojasevic, a young stroke survivor from Montenegro.
Marijeta Mojasevic:
Greetings to all listeners of this podcast. My name is Marijeta. I'm coming from Montenegro. I'm in my early thirties and by professional occupation, I'm a social worker and a youth activist. Last year, I became a mother, which is a great happiness, but also a challenge for my post-stroke health condition. Namely, almost two decades ago, I survived two strokes, which caused chronic illness and constant pain. Hemiparesis and double version, diplopia, are my biggest enemies. Hemiparesis means that my chronic pain is present and body feeling partially absent. In a personal and professional way, when it comes to diplopia, it is not really pleasant to see everything double. But after almost two decades, I learned how to adjust to those circumstances.
In a professional way, I find that seeing double makes every job more complex than it is. I'm a slow reader and my job is all about reading, but did I tell you that I just adore challenges? Last year, I joined the initiative One Neurology, which gives me great hope that neurological disorders will be given same amounts of attention by health systems in many states of the world, because now the situation is not like that.
When it comes to the Global Action Plan of the World Health Organization, I hope that all that has and will be written in that particular document, will be implemented in as many countries as possible. My dream as a stroke survivor and a person who had operations in two countries, but not in my home country, is that my system, my health system, my state, and other similar states will have better health procedures for neurological patients in future.
Sam Pauly:
Marijeta Mojasevic there sharing her experience of life after stroke.
Joke Jaarsma:
Hi. I'm Joke Jaarsma, president of the European Federation of Neurological Associations. You are listening the One Voice for Neurology Podcast.
Sam Pauly:
Well, now I'm pleased to continue our case study discussion of a region which has an inter-governmental, political framework that can be used to drive change for patients, and what, if anything, can be learned from it. To do that, I'm delighted to be joined now by Frédéric Destrebecq, executive director of the European Brain Council, which is a nonprofit organization with the mission of promoting brain research and the ultimate goal of improving the lives of Europeans living with brain conditions, Tadeusz Hawrot, Senior Advocacy Coordinator at EFNA, the European Federation of Neurological Alliances, and also bringing in someone who is in Europe, but not anymore in the EU, Georgina Carr, Chief Executive of the Neurological Alliance, which brings together over 80 organizations from across England. They're transforming the quality of life for people with neurological conditions by improving treatment, care, and support.
It's really great to have all of you with us. A very warm welcome to you all and thank you for joining us. So Frédéric, let me start with you. It's been a year since our first podcast and the launch of the One Neurology initiative. What's the picture with neurology in Europe at the moment?
Frédéric Destrebecq:
Thank you, Sam. I think it's a very interesting time actually for neurology, but also for the brain and all brain conditions, in the sense that what we experience in EBC is the fact that at two levels of policy areas, at least, there are or we expect major developments coming up. First on the research front, in the context of Horizon Europe, the framework program for research and innovation funded by the European Union, we will be preparing what is called the Brain Health Partnership. That means getting together all the large-scale initiatives that have a stake or have been involved in funding research into the brain so far in Europe into one mechanism of funding which will be, let's say, coordinated and in a sense merged.
The second major development is on the front of health and public health in particular. So the director general dealing with health issuing at the moment an initiative on noncommunicable diseases, and this is part of the strategy that they named Healthier Together to address in a coordinated manner noncommunicable diseases at a Euro level. This is accompanied by also an unprecedented funding program in public health that is called EU for Health. This funding is now up to above five billion euros. It has never been that well-equipped in the past, I should say, and it is very important to really keep that at the back of our minds because neurology and mental health are now recognized as an integral part of that program and that initiative.
Sam Pauly:
Fred, thank you. Tadeusz, is there anything you'd like to add to what Fred's been saying? Of course, we did hear earlier from John Ryan about the Healthier Together initiative, John Ryan from DG SANTE. For you, since the launch in the last 12 months, what's the picture, would you say, of neurology in Europe at the moment? You're feeling hopeful about it?
Tadeusz Hawrot:
Yes, pretty much hopeful. I think that for the first time, really, in the history of DG SANTE, we finally see them seeing neurology as a distinctive field. Until now, neurology hasn't been necessarily seen as either distinct distinctive field or a priority, and this is because only now we are learning about the collective burden of neurological diseases. It's always worth reminding that in Europe, they are the third living cause of deaths and a third living cause of disability-adjusted life years, which is a combination of deaths and what does it mean to live with a disorder? We are really pleased to see that DG SANTE is now recognizing neurology as an important field and plans to address it through a set of concrete actions.
Sam Pauly:
Georgina, let me bring you in now. As England obviously is still very much a European country, but now outside of the EU, how would you describe the situation of people living with neurological disorders in England? What's changed, if anything, over the last 12 months?
Georgina Carr:
I think on a public policy level, there's a lot of really exciting things happening, which I can I'll talk about in a moment. But for lots of people with neurological conditions, the last 12 months have undoubtedly been really, really challenging. There's been real cuts to financial support for people to deal with the extra costs of living with the neurological condition. We've got more than 170,000 people at the moment on our waiting list for a neurology appointment on the NHS, and 3000 of those people were waiting when we spoke last year, so they've been on that list for more than 12 months. It's 50,000 people that have been waiting for neurosurgery, as well.
There's thousands of people that are still waiting for that specialist input. It's been estimated here that about 10 million people in all, including lots of people with suspected neurological conditions, haven't come forward for support because they've been worried about infection with COVID and their own risk of the virus. And so, there's lots of other people that aren't yet even in touch with services that undoubtedly need support. Then, if I think about those that are delivering services, our neurologists, our nurses, our psychiatrists, they have been worked to the bone over the last 12 months. I'm hearing increasingly of people thinking about retiring earlier or moving to private practice here in England.
There's real challenges, but what I would say is that as a community, we've put in a really robust case for improved focus on services for people with neurological conditions and that is paying off as it is, and it sounds like at a EU level, as well. We're clearly making an impact, despite some very real challenges for people with neurological conditions.
Sam Pauly:
In terms of sort of partnerships across Europe, Georgina, how are you managing to maintain those? Are you still able to work with colleagues in Europe?
Georgina Carr:
Yes. We are able to work with them. It's largely informal, I would say, but we did work with EFNA, for example, on a response to the World Health Organization, an action plan that was pulled together, and indeed we cover England, but we also worked with our colleagues in Scotland and Wales and Northern Ireland to pull together that response, as well.
Of course, on a research level, there's been significant collaboration that's continued despite changes to that relationship, as well. Actually, COVID's shown just how important that collaboration is. There's real appetite, I think, to learn from that and continue to collaborate despite us leaving the EU, which is really, really good to see.
Sam Pauly:
Tadeusz, as I mentioned earlier, we heard earlier in the episode from John Ryan and Fred also, and you mentioned it earlier, neurology is now recognized by the European Union as one of the major noncommunicable diseases. What led to this decision then, do you think, and what does it mean in practice?
Tadeusz Hawrot:
What led to the decision to have this NCD as such is because NCD posed a huge burden to European healthcare systems. We know that they are responsible for over 80% of premature deaths, and when you couple this with an increased focus on the public health because of COVID, we had a significant increase of financial resources for the Youth for Health Program, a twelvefold increase, and I think this led this DG SANTE to rethink their priorities and in a way, step up their game.
Within this, we are very pleased that one of the priorities, trends, will be mental and neurological disorders. At the moment, the commission is engaged in extensive consultations, both with member states who be implementing concrete actions and also patient organizations and NGOs, such as EFNA, to really together reflect on what could be concrete priorities and best practices implemented through this initiative.
Frédéric Destrebecq:
I just wanted to add a very small and personal comment is that, Tad, I find that you are way too humble in responding to Sam. In my opinion, I think that this would have never been, let's say, a reality without the efforts that EFNA had actually spearheaded on that particular issue. Obviously, with the support of EBC and the support of the European Academy of Neurology, I think that it was a very, I should say, a very good demonstration of how coordinated efforts can lead to very concrete achievements.
Tadeusz Hawrot:
I think that we, as a community, really played a critical role in a lead up to this NCD initiative, which now sees neurology as a priority. Here what also helps is making these links between the global priorities for WHO setup as their NCD agenda and inclusion of mental health and neurology in 2018, and making the case in Europe that this should now be reflected in the European priorities.
Sam Pauly:
It's certainly a great example of how powerful the results can be when organizations do team up. Let me turn our attention a little bit to the Global Action Plan. For anyone that's listening that's not really sure what does the Global Action Plan actually mean to you in a sentence? In practice, what it's asking for?
Frédéric Destrebecq:
I think there are two things. On the first round, I should say that this is a kind of lighthouse that's institutions such as the European Commission are actually going to follow so that they recognize the importance of these fields from a public health perspective. Second is that the moment this Global Action Plan will be adopted, there will be a strong push at the level of the member states for them to develop their national plans in response to this Global Action Plan. For us, it is a major change because EBC has been advocating for years for this to happen, so we can only see this with great joy and pleasure that eventually, through this global action, countries will mobilize in order to develop their plan and with the European Commission also putting it on its agenda.
Sam Pauly:
This is a huge opportunity, isn't it?
Georgina Carr:
It's a fantastic step. It's really something that we all can get behind and really wave at our leaders at a national level to say, "Why aren't you doing this? How are you going to compare with other trees?" To be honest with you, it's always helpful to have a bit of healthy competition between countries, as well. I know that's certainly something that's on the likes of Boris Johnson's mind, for example. So we would absolutely be using it as an opportunity to encourage real action on a UK government level. So it's a really positive step and hugely thankful for the efforts that've gone into it.
Sam Pauly:
Do you think that that framework will help collaboration between the nations as well then?
Frédéric Destrebecq:
Yeah, absolutely. I think, as Georgina was saying, I wouldn't call it healthy competition, but maybe emulation, or there is a very polite term saying exchanges of good practices or something like that. Whatever it's called, I think this development in a coordinated fashion can definitely benefit everyone, as long as there is openness in the ways those plans are being conceived, but also implemented.
We all know that one country doesn't look like another when it comes to healthcare systems, funding, organization of care, so it's really important that, at country level, but also sometimes at a more regional level, all stakeholders do actually take part in the conception and establishment of those plans for this endeavor to be absolutely meaningful to the greater number, because otherwise it'll be, again, a very nice sheet of paper with nice words being put on them, but with no real concrete implementation or change.
Georgina Carr:
There's absolutely a role I think for us as a community to hold governments to account and to assess progress made against the commitments in the action plan. Because, as you say, you don't want it to just end up being, a piece of paper on a shelf, so we need to hold people accountable, really.
Sam Pauly:
For people that are maybe listening to us today that are people who are with a neurological disorder, why is the Global Action Plan relevant to them? What difference is it going to make to them in their daily lives? Georgina, maybe I'll let you come in on that, and then Tadeusz, you could follow up.
Georgina Carr:
I think the commitment around setting a national plan to services for people with neurological conditions is absolutely critical. I hear again and again from people with neurological conditions that they feel invisible, that policy makers don't understand the realities of living with a neurological condition. Governments have got a really good opportunity to say, "Actually, we do understand, and we are going to listen and we're going to set out what our commitments are." Of course, they're going to be different across each country and even at a regional and local level, but even just that acknowledgement, I think, is a huge step forward. You'd hope that then translates into improved access to services.
Sam Pauly:
Tadeusz, would you agree? Would you add anything to that? Why should people living with neurological disorders be welcoming this?
Tadeusz Hawrot:
I think Georgina is absolutely right in pointing out the importance of this recognition that we'll get as a field, as neurological disease, which will already address even things at the level of stigma. I think that when you look at what this will contribute to at the national level, you can take the lens of the global targets, and there are a couple of targets that are especially important.
One is those national neurological brain health frameworks, and the other is awareness and advocacy campaigns. Both of these will be really critical and it will be equally critical to have patient groups and individual patients involved. And then, the national plans, they will really consider a range of issues. So you have improving the quality of care, expanding support provided to caregivers, increasing research funding, so all kinds of areas, and especially, I think, you can see at the benefits through the cascade of care. At every element we would like to improve the system, identify gaps, accelerate the diagnosis, improve the treatment, provide better follow-up services, so at every level, really, there can be improvements to patient lives and hopefully also introducing a concept of integrated care.
Sam Pauly:
Let me wrap up, we'll begin to wrap up this part of our discussion, and just ask what lessons do you think that other regions can be learning from Europe and maybe, indeed, what lessons can Europe learn from other regions? Georgina?
Georgina Carr:
I think the commitment that's been made is undoubtedly off the back of concerted collaborative action. So working together absolutely has impact and we absolutely have to continue to do that. There's no doubt.
Sam Pauly:
Tadeusz?
Tadeusz Hawrot:
I think that we have the global framework. We will have national frameworks, such as national plans. What we see happening in Europe is that Europe will provide something which is in the middle between global a national, so there will be a regional coordination. I think this is an excellent model, which probably could be replicated also, or already is replicated, perhaps, in other regions of the world.
Sam Pauly:
Well, let's just take a quick break from our discussion and have a listen to our One Voice for Neurology answerphone messages, as we've got some varied insights from across the region. Let's take a listen.
Speaker 11:
Hello, you've reached the voicemail of the One Voice for Neurology podcast. Please leave your message after the tone.
Speaker 12:
Hello. I am Anette Storstein, a neurologist and the former Chair of the Norwegian Brain Council. In 2018, the Norwegian Brain-Health Strategy was launched as the first brain panel of Europe. What are the benefits of a national brain strategy? First, collaboration of patient organizations, medical professionals, and neuroscientists for the common goal of brain health really attracts the attention of important stakeholders.
Second, joining forces creates an exciting environment for new professional interactions and research, as well as highlighting patient perspectives. Third, brain disease has a huge impact on public health, national budgets, and future medical services. By promoting the public awareness of brain health and national strategy, benefits the society as a whole and in the long term. The field of brain disease has always been complex and fragmented. Now, we need to work together for a common goal because brain matters to everyone.
Emma Rogan:
Hi. It's Emma Rogan here from EMSP, the European Multiple Sclerosis Platform. We're so excited about the World Health Organization action plan and the framework. We have seen how together makes our work sustainable and we've achieved great results for people with MS. But you know 20 countries don't include people with MS or patient groups in government consultation, and 24 countries in Europe don't have a neurological policy. We really want to see movements for people with MS in their financial situations, their work, social lives; really we're talking about their fundamental rights, their dignity, freedom, and we want to achieve equality for them.
To be honest, this brain awareness week our heads and our hearts are with our members and friends in Ukraine. Like many people with MS in Europe, they've never had access to the care they need nor the medication that would prevent disability to get on with living their lives. That's all for now. My voice note is long enough. Call me. You know my number, and if you don't have it, you can get me on emsp.org.
Sam Pauly:
Some thought provoking messages there. I'd like to thank everyone who has left a message during these three episodes for their time and insight. Now, let me bring back our guests to conclude today's discussion. Georgina Carr, Chief Executive of the Neurological Alliance, Frédéric Destrebecq, Director of the European Brain Council, and Tadeusz Hawrot, Senior Advocacy Coordinator at EFNA. Thank you all again for being with us.
Tadeusz, the Global Action Plan's first target is to have national plans covering neurology. Are there some examples where this has worked in other disease areas that can be looked to?
Tadeusz Hawrot:
Yes, definitely. In Europe I can think especially of two disease areas, which is cancer and diabetes. Back in 2014, the European Commission called you member states to develop national cancer plans, and then what happened is what is called the European Guide for Quality National Cancer Controlled Programs. Quite a mouthful, but what this program did is provided a blueprint or a template, if you like, for the production of national cancer control programs. This was collecting the experiences of different international and national organizations in the field of cancer. We really hope that this could also serve as an example.
There are also some interesting lessons to be learned from diabetes. Again, most of the countries in EU already have diabetes programs, and they have been assessed to look what are some key elements that should be covered. I'd like to mention a few. One is the multiple stakeholder involvement. And within this, secondly, very importantly, patient involvement in both the development of the plan, adoption, and then implementation. It's really clear from those evaluations that patient groups played a central role in developing diabetes plans and were also key to the successful adoption and implementation of those.
One more very important element, of course, is providing adequate resourcing for implementation. This needs to receive adequate budget. And then, we have what Fred mentioned already, all the regional differences, so the plan should have a degree of flexibility in it. I think these are a few lessons that I would mention here.
Sam Pauly:
Fred, I can see you nodding along. Did you want to add something to that?
Frédéric Destrebecq:
Probably an anecdote, but yesterday we were sat in a call with our colleagues from Belgium, for instance. Some auditors may know that Belgium is a very complicated country, albeit very small. So these regional disparities was really at the center of all the discussions. I think that getting started on the concept of the national brain plan and the thinking who is responsible for what, and then how we should design it, is a very complex process, but having a push from above, a top-down approach thanks to the gap will certainly help in a sense, but also from the community and bottom up, making sure that, as we were saying all along this conversation, that we coordinate efforts, but also that we continue to make the case for the needs of such development is absolutely key.
Sam Pauly:
Georgina, let me come to you. The ultimate audience for the plans at global and European level, of course, are people living with neurological conditions, and, of course, also their carers. What's needed for those people to benefit from this new momentum at global and European level?
Georgina Carr:
I think the point Tad made about involvement of people with neurological conditions in the development of plans is really, really important because if we're going to build more effective, more efficient, services, research, and support, then, undoubtedly, we have to be listening to people with neurological conditions in those places throughout that process. So I'd say initially that's got to be the first thing to think about is what do we know at the moment and how can we hear from those who we don't normally hear from as part of policy development, with acute eye on seldom heard voices of people within black, Asian, ethnic minority groups?I think that's really, really important.
The second is that there are existing initiatives that are running at a national level that do have some opportunities available for people with neurological conditions to be involved in. But actually they're a bit few and far between at the moment in the UK. So, again, I think this is another helpful bit of pressure to encourage the UK government and indeed the national governments across the UK to build a bit more momentum, I guess, around some of those initiatives.
Speaker 3:
Just a final thought. Fred, maybe, where there are gaps between countries and disparities, what do you think can bridge those gaps across the region?
Frédéric Destrebecq:
That's a question that may be more complex than it seems, in the sense that we need to understand where these gaps are coming from. We need to understand if this gap is really linked to the particular situation of the country because of the organization of care, reimbursement models, and so on and so forth. A lot of work that EBC has been dedicating over the last months or years was really to try and understand better the profiling of countries within Europe in different disease areas. What we realized is that definitely you cannot come up with a one-size-fits-all approach or model or even advocacy narrative, because you need to take account of full account of these disparities. So I guess that this notion of gap needs to be taken with great care. If there are gaps in comparable countries, then obviously these mechanisms of coordination, exchange, communication, learning from others, should definitely happen and leverage benefits to the greater number.
Tadeusz Hawrot:
I just wanted to add to this, we actually have something interesting I mentioned in the NCD initiative because once it collects priorities for action, there will be this concept of clustering countries for teamwork. The idea is to see how countries run their priorities and then group countries accordingly. I think there will be two opportunities here. One will be just grouping the countries together, again, around similar topics, but the other will be teaming countries that on one hand successfully tackled a certain problem, and on the other, other groups of countries that would learn from them.
Sam Pauly:
Talking of lessons that have been learned and collaborations, is there anything else we can learn from COVID as we go forward, as we hope that we are perhaps coming through that tunnel? Georgina.
Georgina Carr:
I think the level of collaboration during the pandemic has been truly amazing. People had to come together in ways that they've never had to before because of the significant pressures on us and on the system, and that has to continue. So if I think about just within our field, we've had access to ministers that we haven't had before, and that's largely because we were partnering with people that we haven't partnered with before. On a campaigning and lobbying effort, that's really, really important.
We've also been involved in a fantastic clinical trial looking at the neurological complications of COVID 19 and actually the pace of research in that field is really quite remarkable and the level of international collaboration and, again, people working in ways they just didn't before, in a less formal way, but actually that's meant we've been able to understand far more about a virus we knew nothing about two and a half years ago, as well as fund research quickly into it. So I think there's lots of lessons to be learned, and actually, in terms of the bureaucracy around some of the stuff, it shows that it can be freed up a little bit, to be frank.
Sam Pauly:
Fred, can that momentum be carried on? Do you think?
Frédéric Destrebecq:
Well, I think we are this crossroad where the lessons learned of the crisis, whether or not this can be feeding into who the ways we would do things in the future, so that means running clinical trials; that means coordinating healthcare units; that means supporting patients in their daily life. But the question that one may ask is how are we going to decide what we keep and what was part of the crisis? There needs to be this communication or dialogue between all the tiers in our systems, that mean professionals, that means families, that means patients themselves, for them to be able to provide the feedback on how they have gone through this period of time.
For instance, digital health proved to be providing great value in our daily work and the daily monitoring of the patients that could no longer come to the hospital. But before we implement that for the future, we need to ask patients how they experienced this interface with professionals. It is unless they would agree to it that we can think of implementing it in the loner run.
I like the fact that we were thinking differently, not only about the use of new technologies, but also about the way we would bring everybody around the table and how we would design the pathways of care for the future.
Sam Pauly:
Let me finish, from all of you, with the last thought: I'd love to know where you'd like to see us in the next 12 months. If we were talking again this time next year, or even further ahead, what is your, in one sentence, dream, hope, ultimate goal that we can be achieving or on the way to achieving? Tadeusz?
Tadeusz Hawrot:
Well, in 12 months, let's hope that we'll be discussing the nitty gritty details in terms of concrete projects that we can do as a community together with member states to start implementing the Global Action Plan on the ground in member states and looking at first priorities.
Sam Pauly:
Fred?
Frédéric Destrebecq:
I'm tempted to say the sky is the limit. We've already achieved the recognition of neurology and mental health as part of the main programs of action at policy level by the European commission, so this is, in my view, already an immense achievement, but clearly the implementation in gearing up to the next steps to that. That means action also at the level of the member states would certainly be something I would be hoping for.
Speaker 3:
And Georgina?
Georgina Carr:
Thinking about the action plan, I'd like to see every single member state with am action plan for services and research for people with neurological conditions within the next five years; at least it would be drafted as a community holding governments to account. In the next year, what I'd really like to see is concerted action around mental health, because the impacts of the last two years cannot be understated in terms of the impacts on our mental, emotional, and cognitive health, and that feels like a bit of a gap at the moment, so I'd like to see that really accelerate.
Sam Pauly:
Well, thank you all for coming together and for discussing this and all the fantastic insights that you've brought to the table today. That brings us to the end of not only this episode, but also our special series to mark Brain Awareness Week. We really hope that you've enjoyed listening and found the episodes interesting and informative as we've been hearing about the latest on the Global Action Plan and heard from some wonderful neurology ambassadors from around the globe and much, much more.
Now, if you haven't managed to listen to all three episodes yet, then please do have a listen. Of course, you can also catch up with previous episodes too, and that's not all: we'll also be back later in the year with our shorter, 10-minute episodes focusing on specific themes for geographical locations.
In the meantime, let's keep the conversation going on social media. You can also stay up to date by following the #oneneurology. That's #oneneurology on Twitter, Facebook, and LinkedIn. Thank you, again, to all of our guests today and throughout the series, and, of course, a big thank you to you for joining us and listening in. Until next time, 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.