One Voice for Neurology

Neurology on the Global Agenda

OneNeurology Episode 18

Stroke and other neurological conditions are a leading cause of death and disability worldwide—but solutions exist. In this episode of One Voice for Neurology, Sam Pauly explores the global neurology agenda just days before the 4th UN High Level Meeting on NCDs, with five years left to meet the SDG 3.4 target of reducing premature mortality from non-communicable diseases.

Hear from:

  • Mia Grupper (Executive Director) and Prof. Jeyaraj Pandian (President) of the World Stroke Organization on the global burden of stroke, advocacy at the UN, and initiatives like the Global Stroke Action Coalition.
  • Dr Lucy Sykes and colleagues from Ghana and The Gambia on real-world partnerships improving stroke care in resource-limited settings.
  • Dr Matilde Leonardi on neurorehabilitation, its impact, and access challenges in global neurological care.

From high-level policy to practical solutions on the ground, this episode shows how collaboration, advocacy, and rehabilitation can make a tangible difference for people affected by neurological disorders.

Sam Pauly - Host  (00:05):

Welcome to the One Voice for Neurology podcast, a series of podcasts exploring making neurology a priority, how that can be achieved with a global and uniform approach, and what that could mean for the future of neurology and those living with a neurological disorder. I'm Sam Polly and you're listening to episode 18, neurology on the Global Agenda. [00:00:30] Hello and thanks for joining us. In this episode, we are looking at stroke in the wider context of neurology and the global NCD agenda. We'll be hearing from the World Stroke Organization exploring partnerships between West Africa and the UK and talking neuro rehabilitation with Dr. Matilde Leonardi. But first, as the community marks an important moment with the UN high level meeting on NCDs, [00:01:00] here's a message from Donna Walsh, co-chair of the One Neurology Partnership. 

Donna Walsh – Co Chair OneNeurology Partnership (01:05):

Hi, I'm Donna Walsh and I'm the current co-chair of the Global One Neurology Partnership. We're really pleased that the United Nations Declaration on non-communicable Diseases is back on the agenda at the UN General Assembly this year. This is a real opportunity to strengthen the NCD agenda with a more complete and inclusive vision, one that recognizes the [00:01:30] role of brain health in individual wellbeing, economic resilience, and human development. The political declaration must explicitly name neurological conditions as a core component of the NCD response. However, that recognition must be matched by concrete follow-through prioritization, resource allocation and implementation. In line with the objectives of the W Ho's Intersectoral Global Action Plan on epilepsy [00:02:00] and other neurological disorders in a world grappling with demographic shifts, rising mental and neurological challenges, and the lingering impacts of COVID-19. Investing in brain health is no longer optional. The one neurology partnership stands ready to support member states in taking this forward by providing evidence, technical expertise, and a direct link to the voices of those living with neurological conditions. We urge member states to use this moment [00:02:30] to recognize neurology not just as a clinical concern, but as a pillar of sustainable development, social equity, and economic resilience. Let 2025 be remembered as the year the global community reaffirmed brain health as the essential fifth pillar of the NCD agenda and began to act accordingly. 

Sam Pauly - Host  (02:51):

Many thanks, Donna for that message. Reiterating the one neurology partnership's position paper ahead of the UN meeting. So let's continue by focusing [00:03:00] on stroke within the wider context of neurological conditions and the global non-communicable disease agenda. Joining me now I'm delighted to welcome Mia Grpa, executive Director of the World Stroke Organization or WSO and Professor j Raj Pandan, WSO President, to talk more about the global burden of stroke WS O'S advocacy and the opportunity to act. Mia Raj, thank you both so much for being with us. 

Mia Grupper - Executive Director WSO(03:28):

Thank you all for inviting us. 

Dr Jeyaraj Pandian - President WSO (03:30):

[00:03:30] Yeah, thank you Sam for inviting us and we are pleased to be here in this program. 

Sam Pauly - Host  (03:36):

Perhaps we could start with you just a moment ago we heard from the chair of the one neurology partnership calling for neurological conditions to be a distinct pillar in the NCD response with just days away from the fourth UN high level meeting on NCDs and there are five years left to deliver on the commitments set out in the sustainable development goal 3.4. Perhaps you could explain what the meeting's for and what that sustainable development goal's calling [00:04:00] for and how that affects stroke, why that's important within it. 

Mia Grupper - Executive Director WSO(04:04):

This is really a crucial moment for countries to accelerate progress to achieve SD 3, 3 4, which aims to reduce premature mortality from NC with 30% by 2030 through prevention and treatment and promote mental health and wellbeing with only five years left. And fortunately very few countries are on factory this going and during the high level meeting. There will also be a political declaration [00:04:30] that will be formally endorsed up to three months of intense negotiations. It's really important that this declaration includes evidence-based, cost-effective policies and that is action oriented with measurable targets and commitments as this will guide countries on how to achieve. As to three four, it's also important to add that every year 43 million people die from NCDs and that stroke represents 70% of the NCD related tests, and that also means that without [00:05:00] addressing stroke SDG three, four, it cannot be 

Sam Pauly - Host  (05:03):

Seen. Jeyaraj, perhaps you could tell us stroke is sometimes seen mainly as an NCD, sometimes it's seen as a neurological condition. Is it important that it's recognized as both? 

Dr Jeyaraj Pandian - President WSO (05:13):

It's an important point to consider because in both areas like NCD as well as neurological disorders, we have global programs. So stroke has one advantage to be recognized as part of the NCD as well as neurological disorders because many of the [00:05:30] risk factors of stroke IT share with other ncd. So in that way as a global policy program or a regional and a national level policy, it is good that stroke is in NCD, but also if you look at the neurological disorder, there are several links and that is another advantage of stroke being in the neurological disorders because there are several post-stroke issues like epilepsy, depression, rest, cognitive impairment, they're all linked. 

Sam Pauly - Host  (05:59):

And what [00:06:00] global burden are we seeing of stroke? Could you illustrate that global burden and the impact of it and also perhaps how that burden is changing 

Dr Jeyaraj Pandian - President WSO (06:08):

The 2021 WS of fact sheet based on the global burden of disease, the number of incident cases is about 12 million in 2021 and the prevalent cases 94 million out of the 12 million incident cases, several million deaths. So that is more than half of deaths occur from the incident cases. And we have [00:06:30] 94 million survivors. More than 50% of them they live with some sort of disability. It could be mild, moderate, or severe. So this is a long-term impact and if you look at the figures, more than 89% of the strokes occur in lower and middle income countries. So that is a huge disparity that we see globally in terms of a global burden of stroke and the impact, if you look at low and middle countries, if for example, a male member [00:07:00] at 40 years of age has a stroke and he's the only earning member of the family, there's a huge economic impact on social impact that happens now. About 53% of the strokes occur in people below 70 years of age, so that is a big trend stroke occurring in younger people. 

Sam Pauly - Host  (07:18):

You mentioned the possible financial impact on families. What other impacts does stroke have 

Dr Jeyaraj Pandian - President WSO (07:23):

Besides the financial impact, the caregiver burden, if you look at low and middle income country, there is no social support system. [00:07:30] It's not really just the financial or economic impact, but the social impact on the family structure, it is enormous 

Sam Pauly - Host  (07:38):

With such a large burden that you've just outlined. Does it follow therefore that the opportunity for change is also equally large? 

Dr Jeyaraj Pandian - President WSO (07:46):

Yeah, of course. With several activities that are going on through World Stop Organization advocacy programs, we work very closely with WHO headquarters, regional offices, country offices, and professional organization. [00:08:00] What I could see is compared to about 15 years ago, there is a tremendous moment to address this global burden of stroke and the WO Alliance Neurology Commission, we came up with a recommendation to reduce the global burden of stroke through four pillars. That is acute pillar rehabilitation pillars, surveillance pillar and prevention. And there are very strategic recommendation that are available and many countries have already started following this and also implementing some of these pragmatic recommendations. [00:08:30] I'm confident that through these actions we'll be able to reduce the global burden of stroke for the next two decades. 

Sam Pauly - Host  (08:37):

Mia Jeyaraj mentioned some of the advocacy activities which are taking place now. Could you perhaps tell us a little bit more about what the Global Stroke Action Coalition is, how it came about, who it comprises and what the aim of it is? 

Mia Grupper - Executive Director WSO(08:50):

So even though we have done a lot of stroke advocacy in the last I would two decades, stroke is really not at all where it should be on the global health agenda. [00:09:00] And while the risk factors are the same for many NC stroke really requires time critical intervention demand is specialized infrastructure and training for emergence response as well as rehabilitation as secondary prevention. With the upcoming U one high level meeting, we thought that this was really the right time to ramp up our advocacy efforts and to do this effectively, we decided to bring together partners from both public and private sector and by pooling resources, leveraging each other's [00:09:30] expertise and networks and maintaining sustained advocacy pressure across multiple channels, we believe that we can drive greater impact and advance our shared goals more efficiently. So the WSO is the convener in this Global Stroke Action Coalition that was launched in April this year, and we have eight civil society members. They are both patients, organizations and scientific organizations from across the world. And then we have five industry partners working in prevention, treatment [00:10:00] and rehabilitation of stroke. And the coalition also have six ambassadors with lived experience and 10 government champions and over 90 endorsing organizations and institutions around the world really to drive urgent commitment, investment and action on stroke and to reduce the burden of stroke for everyone and everywhere. 

Sam Pauly - Host  (10:21):

I know that the coalition has set out five clear urgent actions that country leaders and government partners can adopt. Could you outline those for us? 

Mia Grupper - Executive Director WSO(10:30):

[00:10:30] Of course. These five US are making stroke a priority part of national NCD policies, developing national stroke action plans, funding stroke action, and implementing robust monitoring system and include stroke survivors and caregivers in policy development. 

Sam Pauly - Host  (10:49):

Jeyaraj, if we can get this right and you see the progress that you're hoping for in reducing the burden, what will the knock on impact be for other neurological disorders? 

Dr Jeyaraj Pandian - President WSO (11:00):

[00:11:00] If we reduce the incidence of stroke, it'll reduce the incidence of dementia. It's not only vascular dementia. There are risk factors that even in primary Alzheimer's dementia that it shares. So even if we focus on early detection of hypertension and treat them early, you're going to reduce the primary dementia burden like Alzheimer's disease. The second important part is epilepsy. Post-stroke epilepsy, it's very common. We could see a tremendous reduction [00:11:30] in epilepsy as well. And also of course, mental health, post-stroke, depression, anxiety, these are very, very common. So it's not only the incidence of stroke but it's effect on other neurological diseases Also, we'll be able to see that impact 

Sam Pauly - Host  (11:46):

Shortly. We're going to hear a little bit more about a partnership, which is going on in terms of education. Jeyaraj, how important education and partnership in achieving these actions? 

Dr Jeyaraj Pandian - President WSO (11:56):

It's very important because what we see is the gaps [00:12:00] in the stroke care besides the infrastructure problems that countries face, availability of medications, the skills then competencies. So this is very, very crucial. If you don't address that as a global organization, if you don't empower people, then even if they have stroke unit, even if they have a CT scan, they won't be able to implement the protocols and treat these patients. 

Sam Pauly - Host  (12:24):

Just as we come to the end of our interview, it's been so fantastic to have you both with us as you look ahead [00:12:30] to the future and the burden of stroke, what does success look like and how optimistic are you both for the future? Jeyaraj, I'll come to you first and then Mia. 

Dr Jeyaraj Pandian - President WSO (12:40):

I'm very optimistic. If you look at the progress in terms of treatments in stroke and the last two decades have been high impact research, high impact treatments, particularly acute care, stroke, unit care, rehabilitation, and also in prevention. All these things will lead to a global reduction in stroke care, [00:13:00] an integrated approach. That is what WO looks at focusing on acute care and that will reduce disability and death and prevention where you can prevent the occurrence of a new stroke or occurrence stroke. So an integrator approach. I'm very confident that there'll be a significant reduction in stroke incidents in the next two decades. 

Sam Pauly - Host  (13:22):

M, what does success look like to you, do you think? 

Mia Grupper - Executive Director WSO(13:24):

First of all, I'm very optimistic about the future for stroke now because we do see really [00:13:30] that there is some momentum and that stroke gets much more attention. We also see that actually before in many low and middle income countries, all efforts were on prevention, but now we see really that it also starts with treatment and rehabilitation because that's necessary because stroke will happen. I'm hopeful that the future will look brighter for stroke. 

Sam Pauly - Host  (13:53):

Jay, Raj, Mia, it's been such a pleasure to have you both with us. Thank you very much for joining us. 

Dr Jeyaraj Pandian - President WSO (13:58):

Thank you. Thank you. So 

Sam Pauly - Host  (14:00):

[00:14:00] Well, we've just been hearing about the importance of education and partnership in improving global stroke outcomes, and now we're going to hear more about a partnership doing just that. Joining us to tell us more about the wessex Global Stroke Partnership. I'm delighted to welcome from The Gambia Yahya and Jai, a senior nurse and clinical researcher from Ghana, Dr. Val Aua, a senior specialist and head of the stroke unit at Tamali Teaching Hospital and a Commonwealth Stroke fellow at the Wessex Global [00:14:30] Stroke Partnership. And Dr. Lucy Sykes, a consultant stroke physician at Hampshire Hospital's, NHS Trust in the UK and the UK co-lead for the Wessex Global Stroke Partnership. Thank you all so much for being with us. 

Dr Lucy Sykes - UK co-lead for Wessex Global Stroke Partnerships. (14:43):

Thank you. 

Dr Valentine Akwulpwa - Head of stroke unit Tamale Teaching Hospital, Ghana (14:45):

Thank you for having us. Thank you. 

Sam Pauly - Host  (14:47):

Maybe Lucy, we can start by coming to you to explain a little bit more about what the Global Stroke Partnerships is and how it came about. 

Dr Lucy Sykes - UK co-lead for Wessex Global Stroke Partnerships. (14:54):

Wessex Global Stroke Partnerships is a collaboration between UK stroke clinicians [00:15:00] and healthcare partners in Ghana, The Gambia and Zambia. It started in 2009 with the objective to improve outcomes, specifically decreasing mortality for people with stroke. So the big hospital in Accra and Ghana is now a regional exemplar for stroke care management with a stroke unit that opened in 2014. And the team there have expanded training throughout Ghana and beyond. And subsequently [00:15:30] partnerships have developed in Gambia and Zambia where a stroke unit opened in 2023. And the key tenet really is education and empowerment of staff to enable people to provide the best possible care for people with stroke using the resources that are already available in country. 

Sam Pauly - Host  (15:49):

Let me come to you, Val and Yahya. Val, I'll start with you. What were the main challenges or gaps that you faced in Ghana? 

Dr Valentine Akwulpwa - Head of stroke unit Tamale Teaching Hospital, Ghana (15:56):

With Ghana, we had issues with staff knowledge [00:16:00] and how to care for stroke patients, and also the awareness of the public about the need for stroke services within the hospital. We still have areas where people think that stroke is not meant for the hospital, and so they usually end up in herbal treatment or traditional healers. So usually if you look at our data in terms of mortality, the leading cause of death in most of our internal medicine departments has always been stroke. [00:16:30] So with that in mind, that was a need for us to up our game in terms of stroke services 

Sam Pauly - Host  (16:36):

And Yahya. If we look at The Gambia, are those the same sorts of challenges that you were facing? Does that resonate with you or were there different challenges? What were you facing? 

Yahya Njie- Senior Nurse and Clinical Researcher, The Gambia (16:46):

That's a very important question and I'll give you two response to this question. One of the thing is awareness among the population of the gamb because many people when it's come to stroke, they find it difficult to translate what is stroke [00:17:00] in our own local language and how does it come about? And people are not paying most attention to this. So awareness basically is one of the leading factors. So when it's come to another thing, it's training and education because we don't have any stroke consultant in The Gambia and we don't have neurologists in The Gambia. All the neurologists are from other African countries like Ghana and then also in Nigeria mostly currently we have one adult neurologist and then we also have one [00:17:30] P neurologist. But that is not enough because we don't have any trained Gambian. And then also that is a challenge because we don't have nurses that are also trained on stroke care. These are two major challenges that Gambia is currently facing when it comes to stroke care in the country. 

Sam Pauly - Host  (17:45):

Lucy, let me pick up on some of those challenges that ya and Val have just outlined for us. What are the key goals now? Are they very much still the same challenges that you're addressing and how have things developed? 

Dr Lucy Sykes - UK co-lead for Wessex Global Stroke Partnerships. (17:56):

We know that there's good evidence that multidisciplinary [00:18:00] care in a dedicated stroke unit significantly reduces death and disability from stroke. That's a global known finding. And because in a lot of hospitals globally, but if we're talking specifically about The Gambia or in the non-strike unit hospitals in Ghana, there's no coordinated multidisciplinary care. The patients are scattered throughout the hospital being looked after by a variety of clinicians who have usually fairly minimal stroke or neurological [00:18:30] specialist skills. So our key goals have been very hospital focused as this kind of phase of the project because that's where the resource is at the moment, and that's where we feel that we can have the most impact. So we've been embedding some basic core clinical skills, eight core stroke skills into team education in a train the trainers fashion. So these skills have been identified and developed collaboratively with the teams, and [00:19:00] then we've supported them to cascade that training out through the teams to increase the knowledge and skill level of healthcare professionals with a view to then hopefully as has begun to happen in Ghana and with our other partners in Zambia, to then be able to bring those interested clinicians together into a stroke unit where these patients can be looked after in a coordinated way, which we know makes such a difference. 

Sam Pauly - Host  (19:24):

How's that working for you, Val? What's the sort of response you're getting from colleagues? 

Dr Valentine Akwulpwa - Head of stroke unit Tamale Teaching Hospital, Ghana (19:28):

It has been very welcoming [00:19:30] simply because people have immediately seen the difference and the impact it has made on the lives of patients. So I can cite one example before the leading course of death among stroke patient used to be aspiration pneumonitis, but with one of the basic core skills that were learned how to test for swallowing in the stroke patients with just that education by bedside and getting the staff aware of [00:20:00] how to conduct this test, that statistic has disappeared. Aspiration pneumonitis is no longer the leading cause of death among stroke patients in my facility. So people have immediately seen the impact and everybody's excited about it. And then again, when you talk about simply turning a patient in bed, having the knowledge to know how to turn a patient in bed in terms of positioning for our stroke units, it is impossible to have bed pressure [00:20:30] source. So it has both some sort of enthusia, some sort of excitement among clinicians to know that simple things done bedside without any sophisticated equipment or gadgets is impacting on patient life. So I have people calling me and complaining Why you didn't include me in the training with this training of trainers, now we are training the rest of the staff within the facility to expand the knowledge or not just limited to the emergency and the stroke unit, but the [00:21:00] entire hospital. Yeah, 

Sam Pauly - Host  (21:01):

Yeah. Val gave some tangible examples there of practical changes or simple techniques that have made a real difference for patients. Maybe I could ask you that question and also how has this been received by you and your colleagues? 

Yahya Njie- Senior Nurse and Clinical Researcher, The Gambia (21:16):

Before the partnership, it was a challenge because we don't have nurses who specialize in neuro care and we don't have any stroke consultant. So the training gap was there until when the partnership came, and then [00:21:30] they trained a lot of nurses in Edward Francis Sport teaching hospital in Gambia. One key example that my colleague gave was when it's come to the most complication that patients with stroke that they have when it come to aspiration pneumonitis, but after the training, this has technically dropped. And when it come to another thing that simple toning of patients by way, we create a chart and then we turn patients every two hourly or three hourly. This was very impactful to our patients. We also do TOT, that's [00:22:00] train of trainers to provide these basic knowledge to the general nurses in the hospital, and this has definitely changed the narration of stroke care in the country. There are a lot of them, to be honest. Even oral care is one of them because oral care is key in the patients. Look, these are simple things that you know that they have really transformed the narration of in the country with the partnership. 

Sam Pauly - Host  (22:23):

Lucy, we've just heard about a lot of the benefits in Ghana and in The Gambia. What about for the UK team as well? Has there been benefits [00:22:30] there? 

Dr Lucy Sykes - UK co-lead for Wessex Global Stroke Partnerships. (22:31):

Absolutely, definitely. So currently the UK team is 11 of us. We are scattered across various hospital trusts. So immediately we've widened our UK network of colleagues working in stroke, but also got a lovely global network of colleagues and friends. And the education and learning is two way definitely. We've all had to learn new leadership skills, communication skills, managing our grants that we get that fund [00:23:00] the work. I think one thing that's really important is our cultural awareness of how different cultures view health and stroke, and also day-to-day culture and wider appreciation of the roles of different members of my team that I work with here in the NHS. 

Sam Pauly - Host  (23:16):

Clearly the partnership is a tremendous success. What would you say each of you has been key to that? 

Dr Valentine Akwulpwa - Head of stroke unit Tamale Teaching Hospital, Ghana (23:23):

I think with stroke, it is a team effort. It's usually teamwork. So on the [00:23:30] basis of that, it is pure passion and dedication. I mean the joy of seeing patients get better, the joy of educating the public on what stroke is and what can be done to mitigate not just the patient has had a stroke but also creates awareness on prevention. 

Sam Pauly - Host  (23:49):

Yahya, what would you say has made this partnership so successful? 

Yahya Njie- Senior Nurse and Clinical Researcher, The Gambia (23:53):

The partnership has brought a lot of positive changes here in The Gambia. Having that opportunity, having [00:24:00] that positive partnership, travel all the way to UK and learn new things coming back to your country and then also utilize that knowledge and have changed a lot of things in The Gambia. 

Sam Pauly - Host  (24:11):

Lucy, what would you say has been the reason that the partnership has worked so well and is so successful? 

Dr Lucy Sykes - UK co-lead for Wessex Global Stroke Partnerships. (24:17):

I think there's a number of things. One of the things that we've been able to make use of is different funding streams. A lot of our funding has been through global health partnerships, which was previously known as Tropical Health Education [00:24:30] Trust. And they have funded different types of project for us that have enabled us to do different projects. So for example, we've had visits to our partner countries. Our most recent project was developing our modules into online e-learning modules. So hopefully they're going to be more widely accessible globally through our website. And we've recently had some Commonwealth Scholarship Commission funding where both Yahya and Val came to the UK for six weeks to visit us all in our various hospitals and [00:25:00] see things like thrombolysis and our advanced stroke pathways that are the aspiration for stroke care around the world. So we've used a variety of techniques to try and develop leaders within the countries to take these things forward. We've worked quite hard on looking at things like succession planning so that there isn't a single point of failure. There's not just one nurse that knows things, there's a team of people, so if somebody's sick or on leave or redeployed, then the skills aren't going to be lost. [00:25:30] It's very much been a collaborative partnership. Everything has been driven by the requirement and the need that's been identified by our partners in country. And then all the resources have been developed and adapted to be appropriate for those settings. 

Sam Pauly - Host  (25:47):

I know that there's been a partnership with the World Stroke Academy. How has that worked? 

Dr Lucy Sykes - UK co-lead for Wessex Global Stroke Partnerships. (25:51):

We've been really lucky to be supported by the WSA to deliver two webinars over the last three or four years. The first was [00:26:00] in collaboration with our partners in Ghana, and that was an overview of the partnership. The second webinar was more about the core skills and detail about the training, but also how to access it, how to disseminate training through the teams. We've got another collaboration with the World Stroke Academy coming up, exploring the online e modules to promote their use more globally and make the training more accessible to people around the world. 

Sam Pauly - Host  (26:29):

How does [00:26:30] this sort of partnership link back to the bigger global goals? 

Dr Lucy Sykes - UK co-lead for Wessex Global Stroke Partnerships. (26:33):

Westex Global Stroke partnerships is grassroots development and in practice on the ground as opposed to being a high level research project. And you need both in order to drive healthcare outcomes forward sustainable development. Goal 3.4 is reducing premature mortality from non-communicable diseases. And quite clearly this work does reduce morbidity and mortality from stroke in both Ghana and Gambia. There's data [00:27:00] showing this in the first two years of our partnership with kbu Teaching Hospital in Accra. When we started there, the in-hospital mortality was approximately 45% from stroke as compared to maybe approximately 12% in the uk. And within two years, the implementation of just two core skills, the swallowing assessment and management and repositioning and manual handling that in hospital mortality had come down to somewhere between 17 and 20%. And that has now [00:27:30] been sustained for more than a decade. So we know that doing these really simple things works. It reduces complications, it reduces poor outcomes, it improves quality of life, and importantly, it gets people back home to their communities, to their families and able to carry on living their lives. 

Dr Valentine Akwulpwa - Head of stroke unit Tamale Teaching Hospital, Ghana (27:50):

The SDG 3.4, in terms of non-communicable diseases, we are looking at reducing unwanted mortality. So the work that [00:28:00] the partnership emphasizes is on skill training and knowledge acquisition for trained professionals. So if that knowledge is carried across, then it means that it impacts on patient survival and then we have better outcomes by so doing, we are achieving that SDG 3.4 goal that has been set up. 

Sam Pauly - Host  (28:19):

What comes across when I'm talking to you is you all know each other very well, Lucy, you've said earlier about making friendships as well, but you're all clearly really passionate about this partnership. [00:28:30] Why does it mean so much to you, Val? 

Dr Valentine Akwulpwa - Head of stroke unit Tamale Teaching Hospital, Ghana (28:34):

Personally, I love the work I do. We are beginning to make an impact, which is boosting confidence in the general public to know that, look, when you bring your patients to the hospital and especially under stroke care, you get better outcomes. And the mere fact that we are seeing good results in terms of patient survival and outcomes has been wonderful as a clinician. Once you see that you are making an impact [00:29:00] that is changing the lives of people, then it keeps that drive going on. What I am currently doing is trying to get the regional hospitals within my catchment area to set up just one or two stroke beds, not necessarily a stroke unit, but stroke beds where we can have direct communication with them as to how to start the management of a patient before they need to be referred to a standardized stroke unit. And in so doing, we are opening the door to create more stroke units and transferring [00:29:30] the knowledge that we have gained from the collaboration to the outskits where most patients actually come from 

Yahya Njie- Senior Nurse and Clinical Researcher, The Gambia (29:36):

Yahya, what does it mean to you people after Better Wire? We need to teach our people the importance of having that stroke knowledge, which is key. And the partnerships really working on that. They have also helped us with field beds. They're only for stroke care and they're definitely doing very well. So even that changes, that friendship that they have built with The Gambia has definitely changed a lot of things. 

Sam Pauly - Host  (29:57):

What does this partnership mean to you, Lucy? 

Dr Lucy Sykes - UK co-lead for Wessex Global Stroke Partnerships. (30:00):

[00:30:00] As Valon? Yahya have beautifully explained already. The partnership is all about trying to improve quality of care and outcomes for people with stroke, not just in Africa, but through the increased skills and benefits to the UK team. It benefits our UK patients as well. For me, one of the most important things is the friendships and connections with colleagues across the globe that I've made through this and watching people grow and develop. 

Sam Pauly - Host  (30:25):

And just finally looking ahead, what would you like to see next for the partnership or what is [00:30:30] next for the partnership? Yeah, yeah. 

Yahya Njie- Senior Nurse and Clinical Researcher, The Gambia (30:32):

Keep training us. Training training. We need more training because training one stroke consultant or stroke doctor you to take that much time. But we have nurses here who are very dedicated and they have passions. They really want to be involved in stroke care. So all we need is just training. And once we receive those training, they're going to be change of history in stroke care and The Gambia 

Dr Valentine Akwulpwa - Head of stroke unit Tamale Teaching Hospital, Ghana (30:55):

Beyond training, we should also delve into areas of research to see how [00:31:00] we can further improve on the models that we have produced. And then from our end is expansion, expansion, expansion to the very basic level of primary healthcare stroke should be known by every health worker within the country. That is our goal. 

Sam Pauly - Host  (31:19):

Well, it has been such a pleasure to meet with all three of you and to hear about this fantastic partnership and many, many best wishes for all those future plans as well as all the [00:31:30] successes that you've already achieved. Thank you all. Thank you. 

Dr Lucy Sykes - UK co-lead for Wessex Global Stroke Partnerships. (31:34):

Thank you. 

Sam Pauly - Host  (31:36):

Well, earlier in the episode, we touched upon the importance of Neurore rehabilitation and to discuss that now in more detail, I'm delighted to welcome to the podcast Professor Matilde Leonardi, neurologist, director of the Neurology and Public Health Department and of Coma Research Center at the National Neurological Institute, Besta of Milan Chair communication and advocacy of EAN, the European [00:32:00] Academy of Neurology and Board member of the World Federation of Neuro Rehabilitation, the WHO expert for neurology, disability and rehabilitation. And also to add to that list, a one neurology ambassador. Matilda, it's such a pleasure to have you with us again on the podcast. Thank you for being with us. Thank you, Sam. To start, Matilda, for listeners who may not be familiar with rehabilitation as a concept, could you explain what it is and who can benefit from it? 

Prof Matilde Leonardi - OneNeurology Ambassador (32:29):

It is an essential [00:32:30] health services that should be provided to all those who need several issues. It's not just physical rehabilitation. It's a series of action that try to restore functioning, acting both at personal level but also at the environmental level. In modern days, we are benefiting from good assisted device as well as the new technology that can help people to restore the functioning, which doesn't mean to go back to the previous function, but it means to improve the functioning to as much as possible [00:33:00] given the limitation that can be provided by some impairments due to the diseases. And the near rehabilitation is trying to bring back the person to the best optimal functioning. 

Sam Pauly - Host  (33:10):

And when you talk about functioning, what do you mean by functioning exactly? 

Prof Matilde Leonardi - OneNeurology Ambassador (33:15):

The reputation has been benefiting from the concept of functioning in the last 20 years because the WHO has been trying to embed the concept that the person are not the disease, that they have person have a disease. And that disability is related to [00:33:30] the interaction of the health condition and impairment with the environment so functioning. It is the positive effect of these interaction, meaning you can always act at the level of the environment, improving the facilitators, improving the environmental issues around improving. What are the environmental elements such as even I would say legislation for example, for inclusion in the workplace? What do I say when I mean that we have to improve health globally. We have to improve the functioning. It doesn't mean that we [00:34:00] are able to defeat all diseases, but we can also start improving their inclusion and by improving the environment in which they live. 

Sam Pauly - Host  (34:08):

What kind of impact can rehabilitation have on individuals, their families and the communities they live in? 

Prof Matilde Leonardi - OneNeurology Ambassador (34:15):

The impact is that it provides a support along the old pathway of the disease. It is something that can start from the acute phases and go along the old way. It's an essential health intervention that should be included into what it is provided to people whenever [00:34:30] they have a disease that can benefit from a restoring of the functioning. Doesn't mean going back to a situation in which the disease is not providing impairment, but it is something that can support the pathway towards an improvement of the health condition as well as a pathway towards better inclusion in society despite the disease. 

Sam Pauly - Host  (34:48):

And when neuro rehabilitation is delivered on the ground, what elements need to be in place for it to really be effective? Is it generally included enough as part of the broader care plans and by the clinical team? What is [00:35:00] the key to success? 

Prof Matilde Leonardi - OneNeurology Ambassador (35:01):

Of course, we have different level of rehabilitation in the different countries of the world. If we speak globally, it's sometime considered as a luxury, something that people have to pay out of the pocket, something that is not included in the care. It has been shown that reputation as an essential role in trying to restore the functioning of the person, trying to bring them back to what was before. And it is a long process. It is not just one thing provided by doctors, but we have physiotherapist, occupational therapy, nurses, [00:35:30] social workers. So reputation is a multidisciplinary discipline that benefits by setting goals very clearly. And by defining the difference between the medical rehabilitation and the social rehabilitation, they both enter into the pathway of neuro rehabilitation. 

Sam Pauly - Host  (35:47):

Neurological disorders are a major global health challenge and a big part of the NCD burden. So how has rehabilitation developed over the past few decades to meet these challenges and where do you see the biggest gaps in access [00:36:00] around the world? 

Prof Matilde Leonardi - OneNeurology Ambassador (36:01):

The burden of neurological disorders has been starting to be really recognized only in the last 30 years. It was known before by patients and caregivers. It was not known as the public health issue. And much of this knowledge and awareness is related to the fact that we started to count people. If you are not counted, you don't count. Despite the numbers of all neurological diseases is enormous. There's not an equal enormous representation of the care that should be given to them, and unfortunately [00:36:30] is not considered even in the non-communicable disease policies worldwide where noncommunicable diseases usually are diabetes, hypertension, and pulmonary disorders. So it is difficult into this scenario to go in with diseases such as the dementias and the stroke itself as well as Parkinson and epilepsy and neurological diseases affect from zero to 100 years. 

Sam Pauly - Host  (36:53):

And have you seen the technology and the innovations in rehabilitation change over those three decades? 

Prof Matilde Leonardi - OneNeurology Ambassador (37:00):

[00:37:00] The last 30 years have been magnificent. There has been an adventure and a challenge. We really see that rehabilitation really moved from a pure physiotherapy towards something that can benefit from all the discoveries of neuroscience because there has been an improvement of interaction between basic neuroscience research towards the use of combined new technologies, new drugs, as well as new assisted [00:37:30] device. And I would say for example, issues such as the brain computer interface, for those who cannot speak that can with their thinking, try to communicate, it's something that would've been unthinkable 40 years ago. Of course not everybody can access to all the highest technology. It doesn't mean that you cannot be provided with rehabilitation even if you do not have higher technology. And in this sense, the idea of the WHO as well as of the UN with this sustainable development goal [00:38:00] is that within the universal coverage you have to introduce the issue that near rehabilitation and rehabilitation is there. 

Sam Pauly - Host  (38:09):

That's tremendous progress, as you said over the last three decades. What about looking ahead to the next two or three decades, what innovations whether in technology or care models or community programs are in the pipeline and what have the most potential to expand access and improve outcomes globally? 

Prof Matilde Leonardi - OneNeurology Ambassador (38:28):

I think that we have been learning a lot [00:38:30] from the pandemics because we have been learning to use something that was seen as not imaginable before. The issue of tele rehabilitation, that means providing remote rehabilitation to those who have been in a smartphone even in remote areas. And this is the need that we need to implement worldwide because we do not have enough personnel to do rehabilitation worldwide. The recent Atlas or the WHO are showing that the number [00:39:00] of people doing the near rehabilitation is very little in the world compared to the needs that we have. We have to use the new technology of near rehabilitation and tele rehabilitation because that will allow people who are even in remote areas to access programs in which they can be follow up. This is something that really is new for us and it is something that can have very much people all over the world providing another issue that it is very essential in terms of financing that rehabilitation [00:39:30] gets into the health financing of countries. Many countries do not even have it as a voice, which countries could invest and spend. And so health workforce is essential service. The leader is essential. And when you cannot go physically there, you could use the tele rehabilitation. That is something that is starting to have a big increment also in some areas of the world where technology is very strong, even in remote areas. 

Sam Pauly - Host  (40:00):

[00:40:00] And if we were to come back in 10 years and I said, what progress has been made? How hopeful are you and where should we have progressed to do you think? In terms of access particularly and the global picture? 

Prof Matilde Leonardi - OneNeurology Ambassador (40:13):

What we can do is trying to be sure, and we like international monitoring with the world, traditional new rehabilitation. We do as well as the European Federation and the International Federation of Physical and Rehabilitation. And we are trying to introduce rehabilitation in all the countries as one of the things that is provided [00:40:30] to our patients because we have seen the benefit, we have also seen the effects of non-pro providing rehabilitation. So we can use the contrary. When you do not provide rehabilitation, the kind of condition are getting worse and the economic burden to the country is getting worse. So the investment in rehabilitation is something that is going to pay back because we're trying to improve the health of your citizens. We are in an epidemiological transition. People will have more neurological diseases, people will have more aging, which is a successful medicine. But in the terms [00:41:00] of functioning, we have been seeing that if you can prolong the functioning of people in a better manner, you're also trying to improve the quality of life of people. But you have a return on investment that is very high compared to not doing anything and let people just stay with their disease without intervening. 

Sam Pauly - Host  (41:16):

Are you hopeful for the future? 

Prof Matilde Leonardi - OneNeurology Ambassador (41:17):

I'm hopeful in research. I'm hopeful in science. I'm hopeful that the fight that we do every day together with our patients is something that has meaning. Otherwise, I'll not be here and haven't been here. I've [00:41:30] been here for the last 30 years hoping this, and I think research is paying back and science is paying back and working together is even paying back more. 

Sam Pauly - Host  (41:42):

Thank you so much for explaining to us so much more about neuro rehabilitation, all the progress that's been made. It's been great to have you with us. Thank you. 

Prof Matilde Leonardi - OneNeurology Ambassador (41:51):

Thank you to you. Thank you. One neurology and let's work together for the future. Thank you very much. 

Sam Pauly - Host  (41:56):

Well that brings us to the end of this episode of the One Voice [00:42:00] for Neurology podcast. Do follow us on social media to stay up to date. You'll find us on LinkedIn and also on X with the handle at one neurology. And you can also explore more from the One Urology partnership@oneurology.net. Thanks for listening. And do join us again soon as we continue to speak with one voice for better brain health for all.

 

People on this episode