Today is World Stroke Day, October 29th. Though stroke may feel isolating, there are millions of survivors in the world. Stroke recovery is a community effort, and there needs to be a more clearly defined pathway from prevention to rehabilitation.
Taking that into account, SAFE is proud to announce the publishing of the Stroke Action Plan for Europe 2018-2030. This document is a result of collaborative work between SAFE and European Stroke Organisation (ESO), being an intersection and a point of confluence for large experiences coming from SAFE’s members, stroke survivors and patient advocates from one side and medical experts, specialised in stroke and stroke related research.
“With this great collaboration we are trying to make sure more attention is paid to the whole stroke care pathway. Fatigue, long-term pain, finance, work or unemployment, relationships, aphasia- these things are usually not in front of mind for many medics or politicians and healthcare decision makers. Therefore, the addition of Life After Stroke domain as one of the Stroke Action Plan’s priorities is an important step forward. SAFE is working with ESO to ensure that we jointly engage with politicians and decision makers until the whole action plan is being implemented” said Jon Barrick, SAFE President.
This year, around 610,000 people in the European Union will have a stroke, and, although the figures are patchy, at least 170,000 people in non-EU European countries will have one. That is more than one stroke a minute. Their stroke could be devastating – leading to death or life-long disability, shattering their lives and those of their loved ones. Those who survive their stroke will join the millions of stroke survivors across Europe who live with the health, social and financial impacts.
“Long term commitment and attention to the needs and rights of stroke survivors and their caregivers will contribute to better health and wellbeing, outcomes, increase independence and reduce demand on healthcare, social and welfare systems” concluded Barrick.
The popular version of the Stroke Action Plan for Europe 2018-2030 can now be downloaded from HERE.
The scientific version of this document is also available starting from today and can be downloaded from the following LINK.
On Monday, October 29th stroke support organisations from around the world will create a global moment to demonstrate that there is life after stroke – that a stroke may bring you down but that it’s possible to get #UpAgainAfterStroke.
It is estimated that there are around 80 million stroke survivors around the world each one facing many challenges of daily living after having had a stroke. Stroke survivors face many obstacles and the scale of this is dependent on where they live, their socioeconomic status and the severity of their stroke.
Despite these obstacles on World Stroke Day 2018 we want to focus the world’s attention on what unites stroke survivors and caregivers – their resilience, their capacity to build on the things that stroke can’t take away and their determination to keep going on their journey of recovery.
For every stroke survivor, Getting Up Again After Stroke takes commitment. Building support networks with other stroke survivors, sharing stories of survival and recovery can help people stay hopeful and focused on progressing.
At the same time, caring for someone who has had a stroke can be demanding and many of the relationships that bind us change. It is understandable that carers need help too.
Policy-makers need to understand that long term commitment and attention to the needs and rights of stroke survivors and their caregivers will contribute to better health and wellbeing, outcomes, increase independence and reduce demand on healthcare, social and welfare systems.
SAFE member organisations from 30 European countries are preparing a series of events to mark World Stroke Day this year, under an overarching theme #UpAgainAfterStroke.
Find your country’s organisation HERE and help us raise stroke awareness for this World Stroke Day.
Stroke Alliance for Europe with all our members from 30 European countries, proudly stands with the stroke survivors and their families on October 29th, World Stroke Day.
The slogan and hashtag of this year’s World Stroke Day is #UpAgainAfterStroke. The SAFE member organisation from Serbia sent us a very inspirational story of a young woman who managed to conquer stroke and kept pursuing her dreams.
Photo: Private archive of Marina Krsmanovic
Marina Krsmanovic from Serbia, a nursery teacher and mother of two, never was a smoker and did sports on regular basis. Despite her healthy lifestyle, in December 2017 she felt that her right arm was paralysed, she lost her sight and she noticed speech difficulties.
She did not wait and she immediately called for help. Within one hour she was admitted to St. Sava (Sveti Sava) Special Hospital for cerebrovascular diseases in Belgrade, Serbia. The medics diagnosed a stroke which was a consequence of a congenital heart disease. She was sent to the Institute of Cardiovascular diseases where she had a heart surgery on 24th January 2018.
She found her motivation and strength for recovery in her children. She adopted a new diet, changed the way of thinking and she now says that she has started enjoying her life, finding happiness in small things and that she always has positive thoughts. It’s safe to say that her fast reaction at the first symptoms, quick transportation to hospital and of course high quality treatment in the above mentioned medical institutions were the key for her successful recovery. Now, she can function independently, she has returned to her workplace…
When we got in touch with her, we heard some great news and it’s not enough to say that we were amazed. Apart from returning to her everyday routine, Marina has returned to her hobby that she practiced before stroke- downhill mountain biking. She even won a medal at a competition that took place on Zlatibor mountain (Western Serbia) at which she was the only female competitor!
Photo: Private archive
She said that her only goal has been to take part in the competition and to prove it to herself that she could tame the mountain once again. Taking part in the competition is worth all the attention and admiration one could get but winning a medal is like reaching the top of the world.
Photo: Private archive
Her message to all of us is stick to positive thinking, enjoy little things and enjoy your life to the fullest. We hope that Marina’s story will motivate people never to give up and to keep fighting. We, on our behalf, have a duty to do everything we can to make life easier for those who had suffered a stroke, to help them get #UpAgainAfterStroke!
If you want to share your experiences with SAFE and if you want set an example for people who are facing a stroke and all its consequences, please contact us via Facebook and Twitter.
At this year’s World Stroke Congress In Montreal, Canada, SAFE was present through a variety of activities, from chairing stroke support sessions, being one of the key speakers and presenters, having a very well noticed and visited information stand, to actively participating in the World Stroke Day workshop and shaping the World Stroke Campaign in the years to come.
SAFE President Jon Barrick presented the SSOFT project, an online ‘how to’ toolkit for a range of advocating skills training, from setting up a stroke support organisation to leading PR and advocacy campaigns. This tool aims to build capacity of the European SSOs but can be used much broader to increase one world voice for stroke. His presentation sparked interest even among SSOs from other continents leading to an interesting exchange of ideas and suggestions for its further development. The SSOFT project will be completed by end of November 2018. Project team are looking at the future development such as translation into other languages, additional modules, global scope, said Barrick, but it is depending on funding. The presentation was broadcasted live on Facebook and the video can be found here.
In addition to the SSOFT project, SAFE had a chance to present the economic Burden of Stroke Report, scheduled to be published towards the end of 2019, as well as the SAFE & Industry Partner collaboration project on Life With Spasticity.
However, the Stroke Action Plan for Europe 2018-2030, a joint SAFE and ESO project got the majority of attention due to the fact that it just has been launched in May this year and is aimed to set the road map for stroke prevention, treatment and life after stroke in Europe in the next 12 years.
Successful examples and case studies from around the world, such as the one of the Swedish Stroke Registry and their latest project about caregivers and how they are coping with the consequences of strokes in their loved ones. The need for comprehensive and systematic follow up reviews for stroke survivors, after 3, 6 and 12 months was particularly stressed out.
Prof. Bo Norrving
We heard from Prof. Bo Norrving, University of Lund, Sweden, that one of 6 strokes was eradicated in Sweden over the last 6 years, meaning 14,000 in absolute number of strokes, and saving one billion euros. The reason for this success lays in treatment of TIA, atrial fibrillation and use of preventive medications. Stroke is probably the single most preventable disease of all. It may be that I am wrong, but I would like to be proven to be wrong, said Prof. Norrving.
During a separate open session on stroke as part of the non-communicable disease, Stephanie Mohl on behalf of American Heart and Stroke Association opened the conversation saying: Here we are in 2018 and we still need to talk about why patients need to in center of the healthcare, pointing towards all of the necessary efforts to convince the policy decision makers to listen to the patient voice in almost all parts of the world.
The way non-communicable diseases were addressed so far by the policy makers, the NCD acronym might as well stand for No Can Do, said Jon Barrick. This needs to be changed, but we need to be aware that people don’t put energy into hopeless campaigns, so stroke support organisations should be more active in showing perspectives and opportunities for stroke survivors and their carers.
SAFE was active on social media during the whole three days of the World Stroke Congress. For more information, please visit our social media accounts on Facebook and Twitter.
An open session on stroke and non-communicable diseases
As World Stroke Day 2018 approaches, we would like to invite you to register your event on the World Stroke Campaign website, by clicking on this button below.
SAFE is proud of our member organisations who did tremendous work around World Stroke Day 2017, wholeheartedly supporting the “What’s your reason?” campaign. through use of texts, visuals and other material produced by WSO for this purpose.
We also used the opportunity to convey our own messages based on the Burden of Stroke in Europe Report findings, related to the lack of prevention and stroke awareness campaigns in Europe, as well as the underestimated danger coming from the three biggest stroke risk factors- blood pressure, AF and high cholesterol.
Whether it was a series of lectures like in Cyprus, Portugal, or a book promotion in Luxembourg or sports events that our colleagues from Ireland, Poland and many other countries organised- we showed that raising awareness of stroke was an important topic. Many of our organisations start the preparation for the World Stroke Day long before 29th October. For example, our colleagues from Slovenia started with activities dedicated to WSD as early as September by attending the Festival for the third age and with September’s national gathering, having a stand and giving a free lecture on how to beat stroke, delivered by the vice-president of the Slovenian Stroke Support Organisation, dr. Tatjana Erjavec.
What is your plan for this year? Register your event, put yourself on a map of stroke activists from around the world.
From the beginning of the Stroke Support Organisation Faculty Tool (SSOFT) project the needs of the members of the Stroke Alliance for Europe (SAFE) has been central to the whole process.
The needs of the people who would use SSOFT, was a focus at the last SAFE Working Conference in Zagreb (December 2018) where half a day was dedicated to gaining insight and feedback from the numerous member who attended. One of the many SAFE members who were enthused by this project and volunteered to be part of the User Acceptance Testing Group was Nenad Nikolić from Moždani Udar, the Serbian Stroke Association.
Nenad has worked as a Medical Technician in a Neurology ward in the General Hospital in Ćuprija Serbia, for the past 15 years where he has worked with many stroke patients over the years. Nenad became an active member of the Serbian Stroke Association due to his own personal experience, when his mother suffered a stroke ten years ago.
We caught up with Nenad at the SAFE Regional Conference in Prague to ask him about his SSOFT experience so far.
When SSOFT was presented at the SAFE Working Conference last year what sparked your interest?
SSOFT attracted my attention as I wanted to see how it fitted with my experience as a medical technician working with stroke patients. I saw the potential for this tool as a valuable resource and therefore I volunteered to become a tester of SSOFT. I also had a strong personal motivation to participate as I wanted to learn more about advocacy to help further develop our SSO’s activities.
How have you found the User Acceptance Testing process?
All in all, testing this tool is a very interesting experience and much can be learned.So far, I have tested four out of six modules and after each testing session I have sent my observations and recommendations to the project team. I have had a lot of ideas and recommendations which I shared with the team and I am pleased to say a lot of them have been accepted. The opinion of the people who test the program is important. Therefore, SSOFT is exactly what should be: a tool “for our members by our members”.
Can you briefly describe SSOFT to those who haven’t used it yet?
SSOFT is an e-learning toolkit for organisations that deal with stroke. SSOFT aims to provide the necessary information for effective local and national campaigns to improve prevention, recognition, treatment and care of stroke. SSOFT will have six modules which are in smaller sub-sections which displays the information on slides, like a PowerPoint presentation. The modules also have a lot of video materials where members of stroke organisations or stroke survivors share their experiences, which is certainly of great help. The video clips are in English and are easy to understand. There are also activities and quizzes which keeps things interesting. It is very interactive.
What is your overall impression of SSOFT?
My general impressions are very good, and I find that the entire interface simple and easy to use. The text is easy to read and see, there is also sound that follows the text (a voiceover in English language). All audio-visual content is understandable and can be easily used by people who have suffered stroke, which is very important.The language used is simple, without too many medical terms, so non-medical worker will understand it. As far as content is concerned, it’s very useful and it has plenty of valuable information (from what it takes to start the local Stroke Support Organisation, to recommendations for successful campaigns). From what I have seen so far, I can say that the content “hits the target”.
Would you recommend other people use SSOFT?
Of course! If you are stroke survivor or carer or member of an organisation which deals with stroke, SSOFT is a valuable resource with plenty of useful information about how to advocate for either better stroke prevention or treatment or long-term care.
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Taking that into account, SAFE is proud to announce the publishing of the Stroke Action Plan for Europe 2018-2030. This document is a result of collaborative work between SAFE and European Stroke Organisation (ESO), being an intersection and a point of confluence for large experiences coming from SAFE’s members, stroke survivors and patient advocates from one side and medical experts, specialised in stroke and stroke related research.
For every stroke survivor, Getting Up Again After Stroke takes commitment. Building support networks with other stroke survivors, sharing stories of survival and recovery can help people stay hopeful and focused on progressing.
However, the Stroke Action Plan for Europe 2018-2030, a joint SAFE and ESO project got the majority of attention due to the fact that it just has been launched in May this year and is aimed to set the road map for stroke prevention, treatment and life after stroke in Europe in the next 12 years.
