World Stroke Day 2019 to focus on stroke risk and prevention
The World Stroke Organization has announced the theme for World Stroke Day 2019. With a focus on stroke prevention, the ‘Don’t be the One’ campaign aims to raise awareness of our individual lifetime risk of stroke and to equip as many people as possible with potentially life-saving prevention information and tools.
The rationale for the campaign message is the recent WSO analysis of the Global Burden of Disease, which shows that globally the lifetime risk of stroke has risen and now stands at 1 in 4. Combined with the Interstroke findings that showed around 90% of strokes are linked to a small number of easily addressed risk factors, the potential impact of public understanding of stroke risk and prevention awareness is clear.
Speaking about the World Stroke Day campaign theme, World Stroke Organization Vice President and Campaign Committee co-Chair, Sheila Martins said ‘For me the 29th October is always such an exciting day for the stroke community – it’s the one day of the year that we can come together globally and to make as many people as possible aware of stroke. This year our message When it comes to stroke, think prevention – Don’t be the one.’ is relevant and essential to everyone and we look forward to seeing the stroke community taking up the campaign in countries around the world!’
Co-Chair Deidre De Silva and a leading awareness campaigner Singapore ‘Our team strived to deliver a campaign that will resonate with diverse populations around the world. Stroke is not prevented by hoping it will never happen to you. The campaign encourages everyone to be proactive by understanding their stroke risk and taking the steps to prevent stroke and its devastating consequences.’
World Stroke Day Campaign Resources
A campaign guide for members and the public will provide guidance on how to join the global prevention awareness effort. This will be available from the revamped World Stroke Day website. Members and partners will have access to campaign resources including the campaign video, gifs, editable posters, infographics, social media posts and translated prevention factsheets.
Stroke Riskometer
The Campaign team is also working in close partnership with the Stroke Riskometer team at Auckland University of Technology to promote the WSO endorsed Stroke Riskometer as a tool to understand individual stroke risk and to identify individual risk factors. Riskometer users will be encouraged to conduct their own risk assessment and to share the app on social media tagging four friends. If one person who is tagged downloads and uses the app, they will have free access to an app upgrade that will support them to take appropriate action to reduce their stroke risk.
The Campaign Committee is reaching out to members and supporters asking you to mobilise your global stroke ambassador and influencer network to help us get our potentially life-saving message to as many people as possible.
Each stroke survivors’ journey is a different story. The terrible and terrifying experience changes lives forever, but sometimes people choose to focus on positive things and look forward, redefining their views on life and establishing to so called “new normal”. One of these remarkable people, David Festenstein from the UK, shared with us his life story and how his stroke journey led to a recovery programme called “7 steps to recovery“.
SAFE: How old were you and how did you feel when stroke happened to you? DF: I was 54 years old, that’s 11 years ago, I can not believe it was such a long time ago as it is always vivid in my mind when I think about it. At the time I could not understand why it happened to me as I lived such a healthy life style. I swam most days. I was going to weight-watchers and almost at my ideal body weight. I was also a non-smoker, a moderate drinker, my blood pressure was normal and there was no history of stroke in our family.
On the day of the stroke, I was very frightened I remember shaking in the bay of the stroke ward wondering what would become of me. Would I ever walk again, work again? To go from being able bodied to loosing half the movement in my body, I became numb with the uncertainty. At first I had been told that they thought I had had a stroke as a result of a blood clot and that they would be able to carry out the procedure of thrombolysis (a clot busting drug) that would allow the movement to slowly come back. So I began to run a film of getting better, but this was not to be as they discovered after a scan that it was a bleed and so they could not carry it out. They had said they would have to admit me to the stroke ward and “take it from there” so at this point I felt really terrible, hence the feelings described above.
SAFE: How did the ‘7 steps to recovery’ idea emerged? DF: The “ 7 steps to recovery” originated from the diary and journal which I kept during my stay in hospital. The idea of the diary was to maintain my focus on gratitude, ie what I still had rather than what I had lost. At the same time holding a vision of being a better man back with my wife and children living a normal life again.
I would log the day’s events, highlighting what went well, what worked, what did not work and any overall learning. Also it gave me the opportunity to vent my frustration when I had really difficult days.
The journal allowed me to record any additional learning or observations, especially when I was learning to walk again.
My consultant was fascinated by how I applied my coaching and communication background to my recovery. He said that he thought I was one of the best recoveries he had ever seen. He thought they could learn a lot from my recovery. Firstly how my strategies could be applied to less resourceful patients than myself and secondly how they as health professionals could reflect on what they could do differently to improve the stroke recovery process overall. As a result he invited me to come back to present to the medical team when I was better.
In April 2009 and I went back to the stroke ward and presented to my consultant Dr David Collas and his medical team. In consolidating my notes I discovered there were seven distinct steps that I had taken to support my recovery. They were very excited as they could see the potential for these steps to be applied not only to stroke recovery but in fact any severe health set back.
Finally these videos are the videos that were developed in association with Oxford Brookes University for the content for the 7 Steps recovery app in 2014/15.
SAFE: How difficult was it for you to get back to your regular life after stroke, considering that you were one of the ‘lucky ones’- your recovery was remarkable, you live in the 1st world country where you can get the maximum care etc.? DF: Although I had mobility and I could walk, I could not walk any significant distances without getting very tired. Also the way in which I was walking was far from right so I fought hard to get further physiotherapy because as far I was concerned, there was much more improvement needed. However in contrast the Physiotherapist who was treating me said “I had reached a plateau and that was a good as it gets”
I refused to accept this and as the number of sessions had run out and they would not give me any more, I engaged the Neuro physiotherapist who had treated me in hospital and the quality of my walking improved dramatically.
She had discovered that the former Physiotherapist was giving me “strengthening exercises” rather than “Neuro ones”, so no wonder I was not improving very much and reaching “this plateau”.
The other difficulty that I suffered for a long time was getting tired easily, i.e. fatigue. Furthermore as a result of having my stoke I had lost the work I had before the stroke. As I work for myself I had to start prospecting for work from scratch again and did not start working properly until April of 2009.
SAFE: In conclusion, what would be your one take away message that summarises your seven steps as you describe them in your Youtube videos? DF: The one take away message would be that summarises the 7 steps is that at some level you can take control with your mind and begin to set the intent for your recovery and then create a vision for your life after your stroke.
The first Steering Committee meeting for implementation of the Stroke Action Plan for Europe (SAPE) was held today in Munich. The Steering Committee’s main task will include a definition of a strategy framework, the Key Performance Indicators (KPIs) for monitoring the quality of care and
reaching the targets, as well as a definition of a dissemination strategy.
‘We have a golden moment now for this plan: we can prevent and treat stroke, and globally stroke plans are shifting the tide. On the other hand, if we do not all work together- health professionals, stroke support organisations, health care providers and governments- the pure number of predicted strokes will overload the health care systems of Europe.’ said Hanne Christensen, Chair of the Steering Committee.
The SAPE implementation will cover all aspect of stroke as defined by the domains: Primary prevention, Organisation of stroke services, Management of Acute stroke, Secondary Prevention, Rehabilitation, Evaluation of outcomes and quality and Life after stroke, following the recommendations from the published document. After the first definition of the KPIs, they will be finalized in close collaboration with stakeholders, including but not limited to national scientific societies and governmental representatives. A monitoring platform will be established to ensure accountability in reaching the targets. A dissemination strategy will be further defined in collaboration with stakeholders.
To increase the impact of this initiative (SAPE), the Steering Committee will collaborate with other existing initiatives in improvement of quality in stroke care in Europe. Within that frame, a collaboration with IRENE-COST, World Stroke Organisation (WSO), WHO Europe or other stakeholders was discussed in the Steering Committee meeting in Munich.
About the Stroke Action Plan for Europe
The Stroke Action Plan for Europe 2018-2030 is a document created as a result of collaborative work between SAFE and ESO.
Building on the preceding Helsingborg Declarations of 1995 and 2006, the Stroke Action Plan for Europe creates an aspirational framework to drive healthcare policy, research priorities, local stroke management and patient-focused care to meet the need demonstrated in the ESO/SAFE Burden of Stroke report, with €45 billion direct and indirect healthcare costs each year, a 34% increase in strokes by the year 2035 due to the ageing population, and huge variations in the level of stroke care available across Europe.
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.
About the Steering Committee for implementation of the Stroke Action Plan
The Steering Committee consists of one chair, two co-chairs (one from SAFE, one from ESO), eight Steering Committee members (six from ESO, two from SAFE) and two advisors (ESO).
Members of the Steering Committee:
Chair (ESO): Hanne Christensen
Co-Chair (SAFE): Arlene Wilkie
Co-Chair (ESO): Francesca Romana Pezzella
Members (SAFE): Grethe Lunde, Jelena Misita
Members (ESO): Bart van der Worp, Martin Dichgans, Diana Aguiar de Sousa, Robert Mikulik, Cristina Tiu, Urs Fischer
“In Hungary even nowadays people are ashamed of this disease (stroke), they do not talk about it, they live their life withdrawn, stopping all social activities, and therefore the beneficial rehabilitation opportunities often cannot be brought to their attention. In many cases, the society and the relatives give up on the stroke survivors” says András Folyovich, MD PhD – Board member of the National Stroke Prevention and Rehabilitation League – Hungary.
SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?
András Folyovich, MD PhD – Board member of the National Stroke Prevention and Rehabilitation League
AF: Among the serious consequences of stroke, social reintegration is one of the most important issues, which needs special attention. Stroke survivors recovering with residual symptoms experience that their roles in the society are significantly affected: they can no longer fulfill their former work, and everyday tasks. They may even be forced to resign and thus the economic situation of the families becomes insecure. Significant number of stroke-patients need constant care, and the families face big financial burden. Moreover, family members often must quit their jobs too due to patient care. This emotional and financial burden is very difficult to live with for the affected families.
SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue?
AF: In our opinion, civil organisations can help a lot in the successful reintegration into the community.
The majority of stroke survivors are discharged into the community. However, after the hospital discharge stroke-survivors and their caregivers are not fully aware of the available further rehabilitation options (physiotherapy, speech and language therapy, stroke support organisations etc.). The situation is worse for those, who are living in the countryside, as there are limited rehabilitation opportunities.
Stroke support organisations can help to give the useful information about the existing support groups, rehabilitation facilities and various equipment. Providing orthotics and transfer- and mobility equipment may assist for patients to be able to leave their homes and to start to fulfill the roles, they used to do before.
Support groups can also be helpful to give a platform, where stroke-survivors can meet and share their experiences and support each other.
In summary, our vision is a world, in which the number of stroke cases decreases significantly and all stroke patients receive a personalized, short and long-term support and care, with successful social reintegration.
SAFE: Please tell us more about your organisation.
AF: Our non-profit civil organisation was founded in 1993 and named ’The National Stroke Prevention and Rehabilitation League’ in 2011. Our mission is the prevention and the rehabilitation of stroke patients through services, personal assistance, information, advocacy and cooperation with health professionals.
Our core activities include:
organising free health screening events (Stroke screening day at Szent János Hospital)
editing and issuing healthcare brochures and their distribution (e.g.: physiotherapy exercise booklets to those who live in the countryside)
providing access to transfer and mobility equipment
personal assistance and advocacy to stroke-patients and their relatives
participation in national and local health related events
recruiting new members
The League’s services and programmes are available for everyone. In order to make our work more effective we also co-operate with other national and foreign organisations and governmental decision-makers (e.g.: Aphasia Club, International, Pető Institute, SZÍV SN Association for heart diseases etc.)
The National Stroke Prevention and Rehabilitation League is currently unable to fulfil their tasks appropriately, due to the lack of funding. The League cannot count on direct financial support either from the government, or from pharmaceutical- and other medical companies.
The reason for this is that traditionally the Hungarian Stroke Association (the medical-professional company) organises the stroke-days and the public awareness events, which means that the financial support arrives there.
The solution may be the revaluation of the National Stroke Prevention and Rehabilitation League and the Hungarian Stroke Association. For which, there is a good chance with the current leadership. In close co-operation, it is necessary to redistribute the tasks. The League should deal with the public issues, while the medical-professional company should be responsible for the professional background. It would be beneficial to contact with the neurological departments of Hungary, and to organise the civil organisations around these departments.
This week we spoke with leaders of two SAFE member organisations from Ukraine, Prof. Liliya Zviagina, MD, PhD, President of the stroke support organisation ‘Victory over Stroke’ and Dmitriy Gulyayev, MD, PhD, Director of publishing and research projects, Medical adviser of public subdivision, Ukrainian Anti-Stroke Association.
“I would say that in the information related to stroke and stroke care in Ukraine, provided by some specialists and even institutions, there is a lot of inaccuracies, mistakes, and even obvious and impertinent lie and falsifications” said Dmitriy Gulyayev at the very beginning of our conversation.
Dmitriy Gulyayev
SAFE: What is one issue related to the life after stroke in your country that you think needs special attention? DG: Current state of stroke care in Ukraine is poor, so it is not easy to pick just one problem. In my opinion, one of the major issues is that special needs of stroke survivors are neglected by the society and the government. Stroke survivors are isolated from public – physically (due to inaccessible public transportation, buildings etc.), and psychologically (as they are often ashamed of their disabilities). They are not in focus and are almost ‘invisible’ for the society. Despite the fact that virtually anyone in Ukraine has a family member or a friend who suffered a stroke, they do not realize how many stroke survivors there are in Ukraine, how challenging their life is, and how unfair the society and the government treat this huge sub-population – stroke survivors, their relatives and caregivers.
Unfortunately, stroke survivors themselves rarely volunteer to share their experiences and challenges, and thus we are unable figure out the list of their priorities, and often have no other choice than initiating projects at our own discretion. Moreover, stroke survivors are not prepared to join their forces to speak up about their problems and the unmet needs. As a result, official institutions, take care of those who are younger, more mobile, more active, and who are shouting about themselves louder. Particularly by this reason, among others, for example, rather influential social movement “Patients of Ukraine” was established and is managed and promoted by activists of HIV/AIDS and hepatitis organizations, and stroke items are far out of their interest and attention.
Liliya Zviagina
LZ: Stroke is the leading cause of morbidity and mortality death in Ukraine and is the main cause of disability in adults. Number of sufferers varies from 200 -300 per 100 000 population, depends on region. The main risk factors for stroke are well understood and include atherosclerosis and high blood pressure as well as bad habits. Stroke has a harmful impact on social and family life.
Quality of stroke service varies from region to region and depends on sometimes from personal activities and forces of doctors. To promote good service for stroke patients we have understand what is wrong and what we could to do in existing conditions.
Stroke service in Ukraine is only in the beginning of the way, people could not always access the services they need. I would like to stress on some common problems in Ukraine and what changed during last years.
1/ People are not aware about stroke;
2/ Not all people address in time to get help;
3/ Not enough stroke units;
4/ There are not insurance, and patients must pay for their treatment;
4/ Stroke patients get treatment in general neurological department
5/ Not so many departments use modern treatment (thrombolytic therapy and thrombectomy);
6/Not so many departments are equipped for monitoring vital parameters of stroke patients;
7/ Not so many departments have trained staff to perform all needs of stroke patients, particularly who has a dill with sufferers who have communications problems caused by stroke, such as aphasia;
8/ Not so many departments have multidisciplinary teams;
9/ Early and later rehabilitation are poorly organized;
10/ Not all stroke survivors and their carers are provided with the recommendation they need when they discharge from the hospital;
11/There are not system for observe patient during the first year;
12/ Not all patients are offered individual budgets or direct payments within the first six weeks of their returning home;
13 Not all people has a good knowledge of primary and secondary stroke prophylactic
SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue? DG: Obviously, there is no magic wand to solve this deep social problem. We have to be ready for long-lasting, often thankless routine activities. We have to:
-widely distribute through different channels stories about stroke survivors’ life, needs, problems, solutions – not only in Ukraine, but in other countries with different level of social and economic development;
-build different platforms (both real and virtual) for communication of stroke survivors – peer-to-peer, and with surrounding world;
-involve stroke survivors into elaboration of stroke care on national, regional and local levels, encourage their active self-advocacy.
LZ: This can be summarized in couple of points:
1. The ministry of health declares some prevention measures; there is program -“Available medications”, which covered costs anti-hypertensive medicine, medicine to treat diabetes, …
2. The ministry of health proved protocol of ischemic stroke treatment N602 from 03/08/2012 which is act till now, should be revised according new trends, including thrombectomy
Over the last years the number of stroke units and thrombolytic therapy increased considerably as well as clinic where clot retrieving is available.
Despite of it we must improve these directions, which are help not only survive but return to social life.
SAFE: Please tell us more about your organisation DG: The Ukrainian Anti-Stroke Association (UASA) is the All-Ukrainian nongovernmental organization established in 2004 with the purpose of integrating efforts of medical professionals, scientists, teaching staff of medical educational institutions, workers of social services, mass-media and people at large for improving the health care system in treating patients with stroke, primary and secondary stroke prevention, rehabilitation of patients after stroke and improving quality of medical and social help for patients who had stroke. Since its establishment, UASA is one of the most aggressively working Ukrainian NGOs in the field of medicine and health care, and the single organization totally devoted to stroke.
UASA elaborates, publishes and disseminates National Guidelines on stroke care, holds the most important Ukrainian scientific and education events for stroke physicians and allied health care professional, publishes as its official printed matter the single Ukrainian professional journal totally devoted to stroke “Sudynni Zakhvoryuvannya Golovnogo Mozku” (Cerebrovascular Diseases). For 4 years (2010-2013) UASA was publishing the Russian-language version of the “International Journal of Stroke” – the official printed matter of the World Stroke Organization – for all countries where Russian language is in use, including Russia. Several years ago, UASA has initiated and since then is a leader in the SUNEP – stroke unite nurses education project, which is very useful and successful not only in Ukraine, but in other countries of Eastern and Central Europe.
Main directions of work with general population are educational events for stroke survivors and their caregivers, educational materials for patients and general population, particularly the brochures on different aspects of stroke, “Guidebook on neurological diseases for laymen”, etc. The book “Stroke: Information for those who are concerned” has been re-published 8 times.
We fulfil wide educational activity in Facebook, and currently are on the way to finalize and publish the popular web-resource on stroke for general audience. UASA always was the principal organizer of the activities related to the World Stroke Day in Ukraine.
UASA is member of World Stroke Association and European Stroke Organization and is on the final stage of joining SAFE.
LZ: School for stroke survivors “Victory over stroke” was establish within Odessa neurological society in 2008, after visiting SAFE conference. We started with a small group of stroke survivors, trying to manage their life better, arranging some musical concerts, meetings and courses. We work and people help us as a volunteer. Since 2013 I become general neurologist of Odessa health department and from this time, I try to change the system of patient’s service and act more globally. We are working on many directions:
1.People information, (TV, meetings, newspapers)
2.Stroke prevention (patients and doctors)
3.We are involved in city program “Health” which let our patients get access to CT in acute stage for free and get three days treatment according to protocol, this year we have plane to open three stroke units (one is ready now)
4.Thrombolytic therapy will be paid by this program as well as thrombus retrieving.
5.There two telemedicine centers, where patients from the countryside have access for consultations
6.We teach doctors, mange local, national and international conferences.
7.Late rehabilitation center was open in one of Odessa clinic, where patients have accesses to improve their motor dysfunction, be adapt to the city and home environment
8.I joined school to University of third age, where people improved social life to study a lot of new subjects, computers, languages, tourist’s routes, where I teach people different medical questions, presented brochures, given to our organisation by SAFE, and presented new directions of stroke treatment, etc. This kind of activity play positive role, students of the university recognized stroke in one of the visitors and give help him immediately
9.Mortality after ischemic and haemorrhagic stroke decreased
Photo credits: Facebook (Roman Shwed, featured photo); profile photos of the interviewed persons: Personal archive
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SAFE: How old were you and how did you feel when stroke happened to you?
DG: Current state of stroke care in Ukraine is poor, so it is not easy to pick just one problem. In my opinion, one of the major issues is that special needs of stroke survivors are neglected by the society and the government. Stroke survivors are isolated from public – physically (due to inaccessible public transportation, buildings etc.), and psychologically (as they are often ashamed of their disabilities). They are not in focus and are almost ‘invisible’ for the society. Despite the fact that virtually anyone in Ukraine has a family member or a friend who suffered a stroke, they do not realize how many stroke survivors there are in Ukraine, how challenging their life is, and how unfair the society and the government treat this huge sub-population – stroke survivors, their relatives and caregivers.
LZ: Stroke is the leading cause of morbidity and mortality death in Ukraine and is the main cause of disability in adults. Number of sufferers varies from 200 -300 per 100 000 population, depends on region. The main risk factors for stroke are well understood and include atherosclerosis and high blood pressure as well as bad habits. Stroke has a harmful impact on social and family life.
