Stroke on the agenda at the NCD Alliance Our Views, Our Voices Training Workshop

Jelka Jansa of the Stroke Support Organisation Slovenia tells us about the recent NCD Alliance Our Views, Our Voices Training Workshop

How did you get involved in attending the NCD Alliance workshop in Geneva?

NCD Alliance sent an open call for applications. I am an occupational therapist working in an acute neurological hospital and I have become familiar with patient support organisations both locally and internationally, especially in the field of stroke. Therefore I responded to the questions and have used my own perspectives of being a main carer for my mum. She has been a stroke survivor for more than 20 years and has now additional health problems, including dementia and problems with breathing.

What was the focus of the workshop and what were the topics that you discussed?

The focus of this workshop was to train people living with NCDs to become an advocate and spokesperson.

The objectives of the workshop were:

• To become familiar with NCDs, the 2018 UN High Level Meeting, policy landscape and advocacy opportunities.
• To increase knowledge on mechanisms of participation/forms of involvement
• To develop communication skills leveraging personal stories to call for change
• To develop advocacy skills to mobilise communities and call for change
• To increase confidence in being a spokesperson and advocate for NCD prevention and control
• To develop a menu of actions to take forward the Advocacy Agenda of People
• Living with NCDs and take advantage of the UN High Level Meeting on NCDs

How does this work connect with the issue of stroke awareness, prevention and support?

It links together very well. First of all, 90% of strokes are linked to 10 avoidable risks, by joint actions, including people living with NCDs, professionals, and policy makers, it is more likely that national governments will take necessary actions to control stroke incidence. In 2016,there were almost 14 million incidences of first-time strokes worldwide (Global Burden of Disease 2016). Their access to acute treatment and long term support is not even around the globe. It is important to call on the UN to guide national governments to invest into stroke care. For example, in Slovenia, rehabilitation access is limited and there is no community follow up as there is no rehabilitation taking place in patients’ homes.

What are the actions for you or others to do after attending this workshop? 

Spread the word about  NCDs and the UN High-Level Meeting campaign called ENOUGH. And invite other NCD groups to become involved with the “Our Views, Our Voices”. Stay connected and participate at events taking place just before the July  and September meetings in New York. The virtual space, facilitated by the NCD Alliance, provides a Community of Practice on the Meaningful Involvement of People living with NCDs. It is open to anyone who is affected by NCD and is willing to collaborate:  https://communities.gcmportal.org/plwncd  

Who else attended and did you identify any common issues in relation to the health conditions you work on?

There were representatives from other NCDs from all over the globe. There are differences, depending on the region. For example, in Africa one of the major issues is raising awareness and access to primary care. In many other regions people are facing problems with pollution that has multiple impacts on human health. Finally, many diseases still carry stigma with them. However, the common bottom line is that people living with NCDs have the power to make change regardless of location. The governments need to take action for having healthier citizens.

How can other SSOs get involved in the work of the NCD Alliance and the run up to the High Level Meeting on NCDs in New York later this year?

To visit Our Views, Our Voices website at: https://ncdalliance.org/what-we-do/capacity-development/our-views-our-voices   and get involved.

To join https://communities.gcmportal.org/plwncd   to share their own opinions to be able to further the Advocacy Agenda of People Living with NCDs.

Promoting SSOs in China

Sarah Belson, WSO International Development Manager, has just spent a week in China.

When I was first approached by Liying Xing, a neurology clinical research nurse at University College Hospital London, to participate in the Tiantan Stroke Conference in Beijing, my initial response was that I wasn't sure I was the person she was looking for. 'Yes you are' she said, 'we want someone to talk about stroke support in the community'. This was certainly a good start. I can’t say whether my 20 minute session introducing the WSO, its priority to support SSOs, and examples of SSO work around the world, had an immediate impact on my audience. This might have been because I was a bit of an anomaly in the session on Risk factors intervention and neuroprotection for cerebrovascular diseases. But the topic of SSOs was on the programme at least.

On the first evening of the Conference, the Chinese Stroke Association organised a celebration and award giving event for 300 of its 27,000 registered volunteers. These volunteers include doctors and nurses and are known as the Red Bracelet Movement, the stroke support arm of the Chinese Stroke Association. The movement is championed by Professor Wang Shaoshi and he attended the event along with the leadership of the Chinese Stroke Association. It was inspiring to see so many volunteers from across this vast country, committed to raising awareness about stroke - the risks, the signs and the emergency response. There is huge potential for some of these volunteers to develop SSOs and build on the stroke awareness work. This is certainly something that Professor Shaoshi recognises and wants to explore further.

And then on to Chongqing, a city that has grown from a population of 7 million to 37 million in the past two decades. We visited the Fourth People's Hospital of Chongqing and the attached Emergency Medical Centre. The hospital is not lacking in the latest modern equipment and some of the patients we met on the neurology ward couldn't be more enthusiastic about the care they had received. 'I'm a mathematician' one said, 'I only talk facts; they really took care of me'. One of the neurosurgeons said that 40% of the patients he sees have had a stroke. We met with staff from across the department and there was real consensus that support to stroke survivors in the community is lacking. Straight away we could see the opportunity to integrate stroke support work into the neurology department’s community medical association initiative, through which they share knowledge and good practice with community medical centres. So, what next? There is now a plan to set up an SSO in Chongqing and there is certainly a number of people who are in a position to make this happen.

In other meetings we met with the vice secretary of the Foreign and Chinese Affairs Office, and at the Health Commission we met with representatives of a number of other hospitals across Chongqing. There is great enthusiasm for learning more about what SSOs are, how they contribute to prevention awareness and how they can respond to the gap in rehabilitation and recovery support in China. In addition, many people we met are keen to join the WSO in order to access its resources and opportunities. The priority now is to build on this enthusiasm and these connections, in a country where stroke is the leading cause of death and where there are 7.7 million stroke survivors, who all have a right to be supported in their recovery. 

World Stroke Academy

World Stroke Academy link here or if you are a member of the WSO sign in here

World Stroke Award Winners Announced

Global Experts Highlight Best Practice in Stroke Awareness Campaigns

The World Stroke Organization has announced the winners of their annual awards for best practice in raising awareness of key issues in stroke. The WSO, a worldwide membership body with over 4000 members representing over 100,000 stroke professionals, supporters and survivors. It works to reduce the global burden of stroke and central part of its program is the delivery of an annual World Stroke Day Campaign, World Stroke Day brings together WSO members and stroke stakeholders in a coordinated global day of action to raise awareness of critical issues in stroke.

Last year the theme for World Stroke Day was ‘Stroke is Treatable’ around 100 campaigns were registered with on the WSO map of action, almost half of which applied for an award. Submissions were reviewed by WSO Board and Campaign Committee members with winners selected for reducing the impact of stroke  by raising awareness of patient treatment needs and the potential for recovery.

Award for Best Campaign in a High Income Country

Neeman Stroke Survivors, Israel were selected in the High Income Country category for their high profile campaign using TV, advertising viral online campaigning and advocacy events to raise awareness of the signs and urgent treatment needs of people having a stroke. 

The Cheras Rehabilitation Hospital in Kuala Lumpur Malaysia received an award for best campaign in a low to middle income country.  The hospital ran a broad ranging program of workshops and events involving patients, carers, healthcare professionals and local policy makers to raise awareness of the impact and long term treatment and support needs of patients and families.

The World Stroke Campaign Award for outstanding individual achievement was given to MacDonald Oguike for his leadership of the Acha Foundation’s MasterStroke program that used an impressive combination of media, social media and mobile technology to raise awareness and understanding of stroke throughout Nigeria.

“Stroke is the second biggest cause of death and the single biggest cause of disability worldwide. It is crucial that people recognize the signs of stroke and understand that effective treatment can saves lives and reduce the devastating impact on individuals, families and society. Each of the winning campaigns has made a significant contribution towards the WSO’s vision of a life free from stroke.” said World Stroke President Werner Hacke.

“Each World Stroke Campaign Award Winner has worked in coordinated way, not only to make lives better in their own communities but to support global awareness of stroke. This kind of work is crucial to ensuring that stroke gets the attention and resources it deserves and each winner provides examples that we can all learn something from.” said WSO Campaign Chair Jon Barrick.

For more information about the World Stroke Campaign and Awards please visit www.worldstrokecampaign.org or email campaigns@worldstroke.org

TWAS-Elsevier Foundation: Seeking Applications for Sustainability Visiting Expert Programme in Developing Countries Deadline

TWAS-Elsevier Foundation: Seeking Applications for Sustainability Visiting Expert Programme in Developing Countries
Deadline: 1 March 2017
The World Academy of Sciences (TWAS) in partnership with the Elsevier Foundation, is seeking applications for its “Sustainability Visiting Expert Programme” with an aim to provide institutions and research groups in developing countries, especially those with limited outside contacts, with the opportunity to establish long-term links with world leaders in sustainability and further build capacity building in their countries.

http://twas.org/opportunity/elsevier-foundation-twas-sustainability-visiting-expert-programme

Report of EAN/WSO/AAN/AFAN/IBRO/WFN/IPDMDS 8th Regional Teaching Course (RTC) on Neurology in Sub-Saharan Africa. Maputo, Mozambique 10th -12th November, 2016

The 8th RTC took place in Maputo, Mozambique and was hosted by the Eduardo Mondlane University of Maputo, Mozambique. The RTC, organised by the EAN, was supported by a consortium of African and international scientific societies:

•   Eduardo Mondlane University of Maputo, Mozambique.
  
•   AFAN – African Academy of Neurology
  
•   WFN - World Federation of Neurology
  
•   AAN - American Academy of Neurology
  
•   IBRO - International Brain Research Organisation
  
•   IPDMDS– International PD and Movement Disorder Society
  
•   WSO - World Stroke Organisation
  
  Our gratitude goes to the local organising committee led by Amina Ismael Daude and Lucia Chambal. Her help and the support of the Mozambican Ministry of Higher Education and the Faculty of Medicine at the Eduardo Mondlane University was essential for the success of the RTC. Thanks to their support, 23 young doctors and trainees coming from 12 SSA countries were invited to the 8th RTC and supported by a scholarship from the RTC fund. These individuals were selected by the course organisers from a larger number of neurological trainees who had been put forward by their Head of Department as potential course participants. Thus these selected participants represent some of the very best trainees from across Africa. Many doctors and trainees from the Eduardo Mondlane University and the Maputo Central Hospital as well attended the course; the RTC counted 100 registered participants. The Faculty for the course was truly international. This three-day RTC had three main themes: stroke, epilepsy and HIV and the nervous system in SSA.
  The RTC was also acknowledged by the Mozambican Ministry of Health. Mr. Mouzinho Saide, Vice Minister for Health of Mozambique opened the works of the 8th RTC and stressed the importance of courses such as this Regional Teaching Course for Africa. He welcomed addressing topics such as stroke, HIV/AIDS and epilepsy that are key health issues on the African continent. He thanked the EAN for bringing the course to Africa and allowing Mozambican and African doctors to have access to excellent teaching on site. He finished his introduction by mentioning that in Mozambique, there are only 6 neurologists for 25 million people and expressed the hope that the RTC will enhance interest in neurology among the participants.
  

The Opening Ceremony of the 8th Regional Teaching Course

Faculty: Guenther Deuschl (Germany), Erich Schmutzhard (Austria), Amina Ismael Daude (Mozambique), Albertino Damasceno (Mozambique), Riadh Guider (Tunisia), Augustina Charway - Felli (Ghana), Rufus Akinyemi (Nigeria), Jose Ferro (Portugal), Raj Kalaria (UK), David B. Clifford (USA), Charles Newton (Kenya), Suzaan Marais (South Africa), Christian Napon (Burkina Faso), Jo Wilmshurst(South Africa), Hannack Cock (UK). Case presenters were M. Rabiu (Nigeria), M. Mekki (South Africa) and Cadmiela da Graca Arroz (Mozambique).
The core organisation of the course is led by the “Neurology and SSA” Task Force team at the European Academy of Neurology (EAN) chaired by Prof. Erich Schmutzhard (Austria) together with Ms Eveline Sipido, EAN Liaison Officer. The high international reputation for academic excellence of the course is underlined by the wide range of learned societies and institutions that support this annual course.
The support received from major regional institutions such as the Mozambican Ministry of Higher Education and the Eduardo Mondlane University of Maputo, highlight the importance of the event within Africa. Dr. Augustina Charway- Felli, represented the African Academy of Neurology and Prof. Riadh Gouider participated as WFN envoy to the RTC. Dr Rufus Akinyemi represented the WSO.
The format of the course was a mixture of lectures in the morning, supplemented by a case presentation fitting into the theme of the day. The afternoons were taken up with small group interactive workshops to discuss cases brought by the experts; these sessions were intensive, but proved particularly popular with the participants (and enjoyable for the Faculty!) (see below).

Prof Jose Ferro (Portugal) delivering a presentation on stroke

Other highlights included a ‘video dinner’ interactive session with the faculty on movement disorders and epilepsy and a demonstration by Dr Hannah Cock (EAN Director of Education) of eBrain, the EAN e-learning system. . A clinical case presented by the invited resident Musbahu Rabiu (Nigeria) completed the evening.
It was a real privilege to attend the course as a teacher and to learn from the clinical and scientific expertise of the faculty in the sessions and in the discussions. While the international faculty might bring knowledge of recent scientific advances to the table, the regional faculty brought their extremely rich clinical experience and wisdom in how to apply that knowledge in the diverse health care systems of Africa. Likewise, the trainees brought a great many questions that arose from their daily practice; this unique opportunity for them to ask the Faculty questions and to network with their peers from across the continent was something they really valued. There was also a formal ‘Meet the Professor session’ and a presentation of the EAN-‘s eBrain on-line learning resource, which will be made available free of charge to all low-income and HINARI countries

The meeting was organised to a very high standard, and clearly met the need to build capacity in caring for people with neurological disorders on the African continent, where the burden of disease related to both communicable and non-communicable diseases of the nervous system is high; stroke in adults and - in children - epilepsy and HIV being a major infection of both adults and children being disorders with a high burden of disease in the region.
To meet this continuing need, the EAN-led planning group met in Maputo to plan the next course. The participants at the 8th RTC were asked to list up to three topics of interest they would like to see addressed in a future RTC. From the compilation of the topics received, two that had the highest request were identified for the 2017 RTC.
The 9th RTC will be held in Ouagadougou, Burkina Faso hosted by Prof. Jean Kabore. The dates of the RTC are to be decided.
Following the analysis of the proposed topics and with the input of the faculty, the following topics were identified for the 9th RTC:

1. Neurodegenerative disorders – movement disorders
   
2. Neuromuscular diseases with an emphasis on the clinical aspects
   
3. Spinal cord diseases
   

Given the escalating burden of stroke in Africa, the enthusiasm of the course participants and the very large numbers of questions fielded by the Faculty about stroke over the course of the RTC, I have no doubt that the support from the WSO will prove to have been an extremely cost-effective investment that will help develop a cadre of stroke neurologists in Africa to tackle the emerging epidemic of NCDs there.

Rufus Akinyemi 
Erich Schmutzhard 
Eveline Sipido