SAFE represented stroke patient voice at ESOC 2019

SAFE represented stroke patient voice at ESOC 2019

The 5th European Stroke Organisation Conference (ESOC), took place in Milan, Italy, from 22 to 24 May 2019.

ESOC 2019 was attended by more than 5,600 participants from all over the world. Stroke Alliance for Europe had a stand at this important event, providing information on the latest stroke advocacy activities.

One of the highlights of ESOC 2019 was the constitution of the Steering Committee for the “Stroke Action Plan for Europe 2018-2030” implementation, in which SAFE will take active participation, representing the voice of stroke patients from 33 European countries.
SAFE promoted the Stroke Action Plan on its stand, now available in additional seven European languages (French, Polish, Spanish, Portuguese, Russian, Ukrainian and Greek) with many more translations to come. The Stroke Action Plan’s translation will increase its reach throughout Europe and significantly help stroke support organisations in with their further advocacy work.

Two of the SAFE Board members, Anita Arsovska from North Macedonia and Hariklia Proios from Greece held important lectures as part of ESOC Scientific Programme. SAFE’s President, Jon Barrick, co-chaired a session on the last days of the congress, covering the topic of the burden of stroke in Europe and the Life After Stroke issues.

Apart from the Board members, other SAFE organisations’ members from Turkey, Italy, Croatia, Hungary, Portugal and many other countries took active part in the ESOC 2019 programme within their fields of expertise.


Video credits: Turkish Stroke Support Organisation BEYINDER.

Stroke Survivors’ needs in Germany: There is no structured, standardised care management for stroke-patients when they return home

Stroke Survivors’ needs in Germany: There is no structured, standardised care management for stroke-patients when they return home

“Every year the German national “Day against Stroke” takes place on May 10th. In 2019 it will have the slogan “I can feel something you can’t see”, which is based on the German name of the child´s game “I spy with my eye…”. We want to raise public awareness to the unseen consequences of stroke like concentration and memory problems, visual impairment or states of anxiety. The foundation aims for major media coverage of the topic” says Dr Michael Brinkmeier, CEO of the German Stroke Foundation, Stiftung Deutsche Schlaganfall-Hilfe.

SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?

MB: The survival-rate of stroke-patients in Germany has been increasing over the past 25 years due to excellent treatment in more than 320 specialised stroke units. Usually the stroke-survivors stay at the hospital for a couple of days and a rehabilitation clinic for a couple of weeks before they return home. This is when the situation becomes very difficult in most cases. Common questions of stroke survivors are: How often and where do I get the necessary therapies? Where do I get financial support to adjust my home for my disability? How can I return to work and what happens if I can’t? Will I be able to drive a car again? There are hundreds of questions that stroke-survivors and their families have to deal with. Many of them are overwhelmed by all the challenges they have to deal with – and they are left alone. So far, there is no structured, standardised case- and care management for stroke-patients in Germany when they return home. We know that the quality of live decreases after stroke – not only for the patients but also for their loved ones.

But all the administrative issues are not the only challenges. Some people have difficulties to maintain a healthy lifestyle after stroke or pause there medical treatment without consulting a doctor. Many still have difficulties to return to their usual social lives, especially when they suffer from invisible or in the public not well known psychological consequences. Employers have no understanding why employees after a stroke suddenly have concentration-issues or can’t remember or process new information. Friends are confused or even offended when  leaving  a party after an hour. Neighbors find it weird when being passed on the street without saying “Hello” – simply because the lack of seeing on that side. There is still a lot of work to do to support stroke survivors  in the month and years after their stroke and increase understanding.

SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue? 

MB: The goal of the “German Stroke Foundation” is very precise: We want every stroke-victim to get a stroke coordinator (a case and care manager) to support them for at least one year after stroke.

In 2017 we installed a project called “STROKE OWL” in the region of Ostwestfalen-Lippe (“OWL”). The project is financed with seven million euros by the German “Innovation Fonds”.  Specialised stroke case managers get in touch with the  patients at the stroke unit. The stroke survivor can take part in the program if he or she fulfills certain enrollment criteria. The coordinator informs patients and their families about everything they need to know, gives them advise and support. The manager organises the treatment and therapies, helps filling out applications and forms and looks after the patient in general. The foundation plans to enroll up to 2000 patients into the program. The project will be evaluated scientifically by the University of Bielefeld and all main health insurance companies of the OWL-region – covering two million people – are involved. By proving the advantages and positive effects of a case and care-management not only for the patients but also for the health care system in general the German Stroke foundation strives to support the establishment of stroke case management, which in the end is reimbursed by the insurance companies. Additionally there have been established many smaller, but similar projects all over Germany, which are connected to and supported by our foundation.

Some hospitals employ case managers, others are financed by communities or medical organisations – all with the same goal to improve the quality of life after stroke and reduce recurrent strokes.

Apart from building up a network of professional case managers the foundation has developed another complementary project: We have developed a curriculum to to educate and train volunteers becoming so called “Stroke-Helpers”. These volunteers help stroke-survivors in their everyday-life. They get groceries with them, go for a walk or play games. There are more than 300 “Stroke-Helpers” in Germany by now trained according to the standards set by us and numbers are rising.

SAFE: Please tell us more about your organisation. 

MB: The “German Stroke Foundation” celebrated her 25th birthday last year. When our president Liz Mohn established the foundation in 1993, there was hardly any specific stroke treatment at all. Due to this many patients were not treated at all, and the public, but also even experts had no idea that young people and even children could suffer from stroke. These days – fortunately – belong to the past. Thanks to the effort of many committed stroke experts working together with the foundation we now have more than 320 certified stroke units in Germany and one of the best systems to treat acute stroke in the world. About 400 self-support groups are supported by us and more than 200 doctors, mainly neurologists, dedicate time as volunteers being regional representatives of the foundation. We cooperate with more than 30 so called “stroke-offices” all over Germany where stroke-survivors and their families can get information and support. The national “Day against Stroke” on May 10th has been established by the foundation in 1999. It helps raising awareness to the topic for example with media reports and many events, in which our network and other partners from industry and the public sector are included.


SAFE starts with the first Regional Conference in 2019 on May 9th

SAFE starts with the first Regional Conference in 2019 on May 9th

This year, SAFE Regional Conferences will be held in Paris on Thursday May 9th, Krakow on Wednesday June 12th and Stockholm on Wednesday June 26th.

SAFE member organisations from 30 European countries will gather within their clusters to discuss the following items:

  • A review of SAFE’s work, including the updating of its strategy and a discussion of its relationship with, and activities addressing the importance of co-morbidities
  • Discussion of the implementation of the Stroke Action Plan for Europe, focusing particularly on work that can be done in each country and stakeholder engagement and partnership in advocacy
  • An update on the Romanian Presidency event
  • Translations of materials and promotion of the prevention website
  • Utilisation of the SSOFT website to enable growth of SSOs and more effective advocacy
  • Preliminary findings and messages arising from the Economic Impact of Stroke research
  • SAFE Research Projects
  • SAFE and World Stroke Day 2019
  • Round-up of activity from attending members

SAFE is thankful to Boehringer Ingelheim for the continued sponsorship of our Regional Conferences.

Stroke survivors’ needs across Europe: Are they addressed and how?

Stroke survivors’ needs across Europe: Are they addressed and how?

This year’s main theme for SAFE’s campaigning work is Life After Stroke, the issues around it and how the stroke survivors and their families are coping with it. The campaign will cover this year’s European Stroke Awareness Day in May and will culminate on October 29, for the World Stroke Day, when SAFE will present the Economic Impact of Stroke in Europe Report.

Stroke is responsible for 9% of all deaths each year in the EU and it is also the largest cause of adult disability. Total costs for stroke were estimated at €64 billion across Europe in 2010 and yet it is hugely under-funded in comparison to other chronic conditions. The most important risk factors for stroke are age, high blood pressure, obesity and diabetes, all of which are rising in a larger and increasingly elderly population living unhealthy lifestyles. Recent modest improvements in acute care mean that more people are surviving stroke, but with impairment, with the consequence that we have a major health economic and social burden catastrophe waiting to happen. This will severely impact all EU countries but especially those where inequalities in stroke healthcare are already known.

In 2017, SAFE has commissioned a research project on the economic impact of stroke in Europe. A health economics team from the University of Oxford is now finalising the report, which will be launched by SAFE in October 2019, for the World Stroke Day.

In anticipation of the final results, SAFE would like to remind the public that the absolute number of people living with disability from stroke has been increasing over the past three decades, and this is projected to increase. LMICs (low and middle income countries) have been disproportionately affected by stroke, and disability-adjusted life years (DALYs) from stroke have been generally increasing in LMICs.(1)

For this reason, SAFE is opening a conversation stream with leaders of our member organisations from 30 European countries. Each week, our readers will have an opportunity to read about one burning life after stroke issue in different countries. The series of interviews will shed light on specific country by country needs of stroke survivors and their families.

The slogan of this year’s campaign is: A life saved must also be lived, by Grethe Lunde from Norway, a Stroke Survivor and SAFE Board member.


(1) Feigin VL, Norrving B, Mensah GA. Global Burden of Stroke. Circ Res. (2017) 120:439–48. 10.1161/CIRCRESAHA.116.308413


Real cost of heart attacks and strokes: Double the direct medical expense

Real cost of heart attacks and strokes: Double the direct medical expense

First published on

The full financial cost of a heart attack or stroke is twice as much as the medical costs when lost work time for patients and caregivers is included.

That’s the finding of research published today, World Health Day, in the European Journal of Preventive Cardiology, a journal of the European Society of Cardiology (ESC).1 The study concludes that victims of heart attack and stroke who return to work are 25% less productive in their first year back.

In the year after the event, heart patients lost 59 workdays and caregivers lost 11 workdays, for an average cost of €13,953, and ranging from €6,641 to €23,160 depending on the country. After stroke, 56 workdays were lost by patients and 12 by caregivers, for an average €13,773, ranging from €10,469 to €20,215.

Study author Professor Kornelia Kotseva, of Imperial College London, UK, said: “Patients in our study returned to work, meaning their events were relatively mild. Some still had to change jobs or careers, or work less, and caregivers lost around 5% of work time. Not included in our study are those with more severe events who quit work altogether and presumably need even more help from family and friends.”

The study enrolled 394 patients from seven European countries — 196 with acute coronary syndrome (86% heart attack, 14% unstable chest pain) and 198 with stroke — who returned to work 3 to 12 months after the event. Patients completed a questionnaire2,3 during a visit to a cardiologist, neurologist, or stroke physician. Hours lost were valued according to country labour costs in 2018. The average age of patients was 53 years.

According to published estimates for Europe, the direct medical costs of acute coronary syndrome are €1,547 to €18,642, and €5,575 to €31,274 for stroke.4 “This is the metric commonly used to estimate the costs of medical conditions while indirect costs from productivity loss are often not taken into account by clinicians, payers or policymakers,” said Professor Kotseva. “Taken together, the actual burden on society is more than twice the amount previously reported.”

You can read the full article here.