Sep 23, 2019
Written by Prof. Anita Arsovska, MD, PhD, FESO, SAFE Board member
The Management Committee Meeting of IRENE COST Action took place in Chisinau, Moldova, 16th-17th of September 2019, hosted by Prof. Stanislav Groppa, attended by 46 delegates from 26 countries (several SAFE members), chaired and co-chaired by Robert Mikulik and Natan Bornstein, respectively.
Based on the principles of ESO-EAST platform which was created by Prof. Valeria Caso and the efforts of the Steering Committee, and also formation of RES-Q database, IRENE stands for Implementation Research Network in Stroke Care Quality. ESO and SAFE have been working together more closely in the previous years, especially since signing of the Memorandum of Understanding during ESOC 2017 in order to improve stroke care in many European countries. Effective methods for stroke treatment exist; however the implementation of these treatment methods is very low and therefore constitutes the most challenging problem in current stroke management. In many countries and many hospitals, patients do not receive effective treatment because implementation framework is missing.
Image credits: Yuriy Flomin; Source: Facebook
During the meeting, Veronika Svobodova (Grant Manager) stated that the core activity of the IRENE COST Action is to improve public health through; a) Networking which will facilitate understanding of contextual factors, in between-country differences in innovation-values fit and implementation climate, b) a quality registry that will provide a cohesive picture of the implementation of stroke treatments; followed by c) the dissemination of results to the main stakeholders (e.g. hospitals and Ministries of Health) to implement new mechanisms to improve the outcome of stroke.
The IRENE COST Action will be conducted mainly in European countries where the burden of stroke is higher, while quality of stroke care is lower and resources for healthcare are less developed compared to other European countries. IRENE COST Action will alleviate disparities in stroke care and improve outcomes after stroke. IRENE COST Action is a platform for networking with defined goals.
Image credits: Yuriy Flomin; Source: Facebook
One of the main Capacity Building Objectives is to develop tools for increasing professional skills and knowledge of IRENE COST and sharing best practice between COST members during the IRENE COST Action period. Actually, the first IRENE COST Training school “Communicating scientific data and results to the public” will be organized by SAFE’s Vice-President Markus Wagner in March next year, in his hometown Gütersloh, Germany where together with other experienced speakers he will share his rich experience and knowledge within the German Stroke Foundation in terms of improving the communication of science to the pubic and journalists. During the first day of the Training School- Principles, examples, tips and tricks in Scientific communication will be shared and during the second day lectures regarding Implementing of Stroke Services (experience from Germany), Communication and campaigning, Certification and Quality indicators will be held, presenting the the political work of SAFE in Brussels using data from the Burden of Stroke / Economic burden of Stroke and Stroke Action Plan For Europe (SAFE/ESO).
Overall, the two days intensive meeting was an excellent opportunity to meet with colleagues, make plans for future collaboration, exchange knowledge, and also and great inspiration to continue to work in order to improve the quality of stroke care in each country involved. All delegates enjoyed the warm hospitality of Prof. Stanislav Groppa and his team and were delighted by the charming city of Chisinau and its natural beauties.
Sep 20, 2019
Kjell Holm, General Manager of the Swedish stroke association STROKE-Riksförbundet
The number of people suffering strokes in Sweden is declining with 600 fewer cases in 2017 compared to the year before. On top of that, many people think that Scandinavian countries have everything perfectly set up when it comes to stroke and the entire stroke care pathway, from prevention to life after stroke. This week, SAFE spoke with Kjell Holm, General Manager of the Swedish stroke association STROKE-Riksförbundet, who told us about some room for improvement.
SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?
KH: A system for follow-up after stroke. Many stroke-survivors are not provided with rehabilitation after stroke and don’t know where to apply for it. The Stroke-survivor and carers also need a healthcare contact after stroke to talk about their needs and new situation.
SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue?
KH: The Swedish Stroke association focuses on and highlights on a system for follow up after stroke for all patients. One tool is the “Post Stroke Check List” and an individual plan for the follow up and rehabilitation.
SAFE: Please tell us more about your organisation.
KH: The Swedish Stroke association started in 1983 and has now 9000 members and 83 associations/clubs all over Sweden. We also have a Stroke fond that contributes to stroke science with 3 000 000-4 500 000 Kronor each year. We are included in providing stroke education for the staff in the stroke healthcare. We distribute a lot of stroke information as books, films, papers, leaflets, website, pod, YouTube, twitter. We also write articles and have meetings with the politicians and decision-makers.
Sep 17, 2019
A useful repository for reliable and easy to use information on 10 modifiable stroke risk factors translated to Polish, Spanish, Portuguese, Russian and French.
Brussels, 17/09/2019: A SAFE-owned website on stroke prevention and modifiable stroke risk factors goes live today at www.strokeprevention.info in five additional European languages: Polish, Spanish, Portuguese, Russian and French.
Increasing the number of languages on this website will allow greater accessibility of its content for millions of people who speak these languages, alongside the website’s original language, English.
Around 17 million strokes occur worldwide each year, despite compelling evidence that it is a largely preventable condition. Stroke shares risk factors with other cardiovascular diseases (CVDs) and with many other non-infectious, or non-communicable diseases (NCDs). Addressing stroke risk factors requires both individual and society level interventions – addressing lifestyle and medical issues. This knowledge motivated SAFE to create the website www.strokeprevention.info. The aim of this website is to inform and inspire people to take individual interventions, such as giving up smoking or taking better control over their blood pressure and take an active role in preventing stroke.
Based on the INTERSTROKE study’s findings, ten modifiable risk factors are responsible for 90% of strokes. This website collates all relevant information on the most common risk factors such as: hypertension, physical activity, diet, obesity, smoking, cholesterol, heart disease, alcohol, stress and diabetes. In addition to being written in a lay-friendly language, all website information is in a format appropriate for people with disabilities.
This website is developed and owned by Stroke Alliance for Europe (SAFE), which retains full editorial control over the content.
The original version of this website was originally launched in English in 2018 and was supported by an educational grant from Amgen. The translation into five European languages was enabled by Boehringer Ingelheim in 2019. SAFE is grateful to the generous supporters of its work, which enables important stroke prevention information to reach wider audiences.
About SAFE
The Stroke Alliance for Europe (SAFE) a non-profit-making organization formed in 2004. It is the voice of stroke patients in Europe, representing a range of patient groups from 30 European countries. SAFE’s goal is to decrease the number of strokes in Europe by advocating for better prevention, access to adequate treatment, post-stroke care and rehabilitation.
Sep 13, 2019
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.
Please contact awiseman@kenes.com to dicuss further.
Sep 13, 2019
“Patients’ families have even less support than patients themselves and are often left alone to manage their life and organise the life of their family member with stroke.” said Milan Čuček, President of the Slovenian Stroke Support Organisation and the Vice President Tatjana Erjavec added “It is challenging for carers to assist them with integration into relevant social networks. Stroke support organisation is currently trying to bridge this gap.”
This week we are investigating what is the main after-stroke problem from the patients’ perspective in Slovenia.
SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?
Stroke Care starts in hospitals and majority will have multidisciplinary teams to take care of stroke survivors. Patients with severe disabilities and rehabilitation potential will continue their rehabilitation either at the Rehabilitation Institute or in dedicated Spa’s around Slovenia. This process takes up to 6 weeks. Nowadays, stroke survivors have the possibility for ongoing visits to neurologists. Systematic rehabilitation support is, however, lacking.
Majority of stroke survivors return to their homes with limited access to further rehabilitation programmes. There is a possibility for subsides home help for maximum 20 hours per week and if medical condition requires, also visits from nurses. Primary level provides physiotherapy across Slovenia, but only on the outpatient basis and in limited amount. Occupational therapy is only available in three primary level institutions around country and it is delivered in patients’ homes. Psychology and speech therapy is virtually not available in the community. Private services are possible and this creates imbalance considering access to health services in favor of those who are financially stronger. Majority of stroke survivors are retired and with lower pensions and have therefore limited access to private therapies. In addition, it is observed that central Slovenia and bigger cities have better long-term support comparing to rural parts around country and North West part of Slovenia.
SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue?
Slovenia is a small country with population of 2 million and a good network of primary care. So far, primary care provides social service, limited access to physiotherapy and limited occupational therapy services. Ministry of Health has appointed special group, dealing with organisation of long term support for stroke survivors and creating a document for local long-term multidisciplinary stroke care. In addition, the legislation, dealing with long-term home care also includes multidisciplinary care. The challenge remains implementation of both, related to provide enough financial resources.
Slovenia has well developed Spa rehabilitation. Stroke survivors have an access to Spa rehabilitation in acute stage. Regular access to Spa rehab in sub-acute and chronic stage is not guaranteed by insurance. Stroke Support Organisation highly value this rehabilitation programs for stroke survivors and their relatives and therefore enables it for 100 members per year, being aware that this is not enough.
Ongoing support for carers is essential and it could be organised via educational sessions, self-help groups, organised respite care.
Patient organisations, providing social and health support in public interest, should have an ongoing financial support. Accessing finances via public calls requires professionally that can hardly work voluntarily all the time.
SAFE: Please tell us more about your organisation.
Slovenian Stroke Support Organisation is going to celebrate 30 years of its existence. It operates through 22 stroke clubs around Slovenia and it has 3000 members; mainly stroke survivors and relatives, but also few professionals (volunteers) and other supporters. Leaders of local stroke clubs are stroke survivors. Registered is as a Humanitarian organisation working in public interest. Main financing comes on annual basis from National lottery (FIHO). Additional income comes from local municipalities where clubs are operating, public calls for NGOs, memberships, donations and sponsorship, collaboration in research projects.
Main activities are enabling long-term rehabilitation support via SPA’s, organised physiotherapy in stroke clubs, sport activities, organized exercises (Nordic walking), organized walks. In addition, social networking, educational sessions for stroke survivors and families, organised creative workshop. In last years we provide workshops about self-care and aphasia group. Each year is organised National gathering and this year it will be in Postojna cave for over 370 members. Twice per year, journal KAPNIK is published and the website is constantly updated.
With respect to promotion we organize several events, including traditional walk around Ljubljana, for the European stroke day. Several events are also organized around World Stroke Day. The WSO has given award to our SSO for the best campaign in high income countries for year 2018.
Sep 11, 2019
SAFE is delighted to share the news of Stroke Society of Slovenia being awarded with the World Stroke Award in the High-Income Country category.
World Stroke Awards are given to organisations and individuals who have demonstrated high levels of commitment and creativity in support of the objectives and messages of the World Stroke Campaign.
The Campaign Working Group and Committee selected the Stroke Society of Slovenia, for an award based on their impressive outreach programme and development of local partnerships that will do much to raise awareness of stroke and to build an understanding of the challenges of stroke survivors.
The Committee were impressed by the reach of Slovenian campaign, and strategic engagement of faith based organizations and media that will help to support future advocacy and public awareness campaigns in Slovenia.
Sep 6, 2019
First published on SienceDaily
Breastfeeding is not only good for babies, there is growing evidence it may also reduce the risk for stroke in post-menopausal women who reported breastfeeding at least one child, according to new research in Journal of the American Heart Association, the Open Access Journal of the American Heart Association/American Stroke Association.
Stroke is the fourth leading cause of death among women aged 65 and older, and is the third leading cause of death among Hispanic and black women aged 65 and older, according to the study.
“Some studies have reported that breastfeeding may reduce the rates of breast cancer, ovarian cancer and risk of developing Type 2 diabetes in mothers. Recent findings point to the benefits of breastfeeding on heart disease and other specific cardiovascular risk factors,” said Lisette T. Jacobson, Ph.D., M.P.A., M.A., lead author of the study and assistant professor in the department of preventive medicine and public health at the University of Kansas School of Medicine-Wichita.
This is among the first studies to examine breastfeeding and a possible relationship to stroke risk for mothers, as well as how such a relationship might vary by ethnicity.
Researchers analyzed data on 80,191 participants in the Women’s Health Initiative observational study, a large ongoing national study that has tracked the medical events and health habits of postmenopausal women who were recruited between 1993 and 1998. All women in this analysis had delivered one or more children and 58 percent reported ever having breastfed. Among these women, 51 percent breastfed for one-six months, 22 percent for seven-12 months and 27 percent for 13 or more months. At the time of recruitment, the average age was 63.7 years and the follow-up period was 12.6 years.
After adjusting for non-modifiable stroke risk factors (such as age and family history), researchers found stroke risk among women who breastfed their babies was on average:
23 percent lower in all women,
48 percent lower in black women,
32 percent lower in Hispanic women,
21 percent lower in white women, and
19 percent lower in women who had breastfed for up to six months.
A longer reported length of breastfeeding was associated with a greater reduction in risk.
You can read the full article here.
Sep 5, 2019
Did you know that sitting for long periods of time increases your risk of heart disease and stroke?
It is recommended that we get 30 minutes of moderate intensity activity at least five days a week. However, this does not cancel out the damage caused to our health by sitting for long periods of time.
A recent survey by the Irish Heart Foundation revealed that the average person in Ireland sits down for 7.3 hours a day. The Irish Heart Foundation will run the campaign ‘Escape your Chair’ throughout the month of September. The campaign aims to inform and advise about the dangers of sitting too much and provide useful resources to help reduce your sitting time by making your working day, commute and leisure time more active.
Helping you Escape Your Chair and move more, the campaign also aims to reduce your risk of heart disease and stroke.
To learn more about this campaign, please visit www.irishheart.ie.
Sep 3, 2019
First published on ScienceDaily.com
Ever wondered what was going on in the brain of John Coltrane when he played the famous solo on his album Giant Steps? Researchers at the National Institute of Information and Communications Technology (NICT), Japan, and Western University, Canada, have succeeded in visualizing how information is represented in a widespread area in the human cerebral cortex during a performance of skilled finger movement sequences.
Contrary to the common assumption, the researchers found that overlapping regions in the premotor and parietal cortices represent the sequences in multiple levels of motor hierarchy (e.g., chunks of a few finger movements, or chunks of a few chunks), whereas the individual finger movements (i.e., the lowest level in the hierarchy) were uniquely represented in the primary motor cortex. These results uncovered the first detailed map of cortical sequence representation in the human brain. The results may also provide some clue for locating new candidate brain areas as signal sources for motor BCI application or developing more sophisticated algorithm to reconstruct complex motor behavior.
The results were published online as Yokoi and Diedrichsen “Neural Organization of Hierarchical Motor Sequence Representations in the Human Neocortex” in Neuron on July 22, 2019.
Achievements
The best way to remember/produce long and complex motor sequences is to divide them into several smaller pieces recursively. For example, a musical piece may be remembered as a sequence of smaller chunks, with each chunk representing a group of often co-occurring notes. Such hierarchical organization has long been thought to underlie our control of motor sequences from the highly skillful actions, like playing music, to daily behavior, like making a cup of tea. Yet, very little is known about how these hierarchies are implemented in our brain.
In a new study published in a journal Neuron, Atsushi Yokoi, Center for Information and Neural Networks (CiNet), NICT, and Jörn Diedrichsen, Brain and Mind Institute, Western Univ., provide the first direct evidence of how hierarchically organized sequences are represented through the population activity across the human cerebral cortex.
You can read the full article here.
Aug 30, 2019
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.
