Stroke Survivors’ needs in Poland: Access to specialist long-term rehabilitation is the biggest problem

Stroke Survivors’ needs in Poland: Access to specialist long-term rehabilitation is the biggest problem

Adam Siger, Fundacja Udaru Mózgu

“In Poland, we have access to all modern methods of treating stroke patients. We have a large network of stroke wards, where patients usually arrive quite quickly after the onset of a stroke. We are able to treat stroke in a modern way, but we have a problem all the time with proper care for the patient who usually leaves the stroke unit after 8 or 10 days” says Adam Siger, the President of the Polish stroke support organisation Fundacja Udaru Mózgu and former Board member of SAFE.

SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?
AS: Access to specialist long-term rehabilitation is the biggest problem for people after a stroke, as well as their families and caregivers. we don’t have enough neurological rehabilitation departments. We don’t have enough caring and healing centers where we could accommodate the most difficult patients. We do not have a comprehensive support system for patients and their caregivers after leaving the hospital. Patients with aphasia as well as patients in the coma and in the persistent vegative state (PVS) are not usually admitted to neuro rehabilitation units. Similar problem applies to patients with swallowing disorders and nutrition by intranasal probes. Patients in such post-stroke problems will be left without proper support. A very big problem is access to complete rehabilitation after a stroke for the inhabitants of villages and small towns.

SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue?
AS: Since the beginning of our activity, our foundation has been undertaking a number of activities to increase the availability of modern rehabilitation and support for carers. We already have some small successes in this area but there is still a lot to do. We need to create a stroke national program for prophylaxis, treatment and rehabilitation. We believe that it is possible to consolidate the activities of many medical environments to create such a program. Every year, around 80,000 in Poland suffer from stroke. Stroke is a serious health problem but also social and economic. We hope that in the near future we will be able to interest politicians and decision-makers to create a working group in parliament that will deal with all problems related to stroke. We would like to interest politicians and decision-makers at the central and local levels to improve the situation of people after stroke

SAFE: Please tell us more about your organisation.
AS: Fundacja Udaru Mózgu is a non-governmental organization whose main goal is to help stroke patients, their families and carers. Our mission is all activities in the prevention, diagnosis and treatment of stroke. The Foundation’s activities also include prevention. Our publications on stroke, its effects and prevention are a valuable source of knowledge for the general public. We create social campaigns aimed at realizing the threat that this disease carries, using modern mass media.
We provide direct material and immaterial help to patients after stroke, their family and people with other neurological diseases. We run the only helpline in Poland for stroke patients and their carers.
We publish the Stroke Magazine “1 in 6” in Poland which we distribute for free at neurological departments and neurological rehabilitation throughout the country for free. The magazine is available for free on the Internet too www.magazynudarowy.pl
Thanks to the constant contact with patients from all over Poland, we know how important support and assistance is for people after a stroke.

Ukraine: Out of more than 500 wards that provide assistance to patients with acute stroke, more than half do not have the necessary equipment for diagnosis and treatment

Ukraine: Out of more than 500 wards that provide assistance to patients with acute stroke, more than half do not have the necessary equipment for diagnosis and treatment

Kyiv, October 10, 2019– On the eve of World Stroke Day, representatives of the Ukrainian Parliament’s Committee on National Health, Medical Assistance and Health Insurance, National Health Service of Ukraine (NHSU), professionals providing Stroke Care to patients, and members of the public discussed what should be done by the state to ensure the availability of high-quality Stroke Care in order to reduce the mortality and disability from cerebrovascular disease.

The new Cabinet of Ministers of Ukraine, which has pledged to continue reforming the health care system, recently promulgated a Program where it set an ambitious goal of reducing the mortality rate by 5%. It is impossible to achieve this goal without creating a system of high-quality medical care for patients with acute stroke, as stroke is one of the leading causes of premature mortality and acquired disability in Ukraine.

In 2018-2019, Ukraine has taken the first steps towards creating a National Stroke Strategy. The Working Group, established by the order of the Ministry of Health (MOH) of Ukraine, has drafted the Stroke Action Plan in Ukraine for 2020-2030 and the Provisions on the network of healthcare facilities assisting patients with acute stroke specifying the requirements the hospitals are to meet. As of 2020, these services will be covered at the higher rates by the NHSU under the Guaranteed Medical Services Program. In addition, the MOH, together with the experts of the Working Group, collected information about the departments admitting acute stroke patients throughout the country. The experts were unanimous in that for our country the price of inactivity in this area far exceeds any costs of the right measures, any delay is unacceptable and it is to go ahead with the work started.

Prof. Mykola POLISHCHUK

“There are about 150,000 strokes every year in Ukraine. Many stroke patients are now being treated in general neurological or even therapeutic wards. This is unacceptable, and we request the local departments of health and hospital authorities change this situation as soon as possible, allowing stroke patients to be admitted only to specialised stroke wards. Research and real-world evidence in many countries around the world have shown that care provided in Stroke Units and Stroke Centers significantly reduces stroke mortality and morbidity as well as disability after stroke. According to the preliminary results of our data analysis, out of more than 500 wards admitting stroke patients in Ukraine, less than half have the necessary equipment for the diagnosis and treatment of stroke.

They are unable to perform the necessary workup and to carry out the necessary interventions. Up to 30-40% of stroke patients in Ukraine die within 1 month from the onset and less than 20% ever return to their previous level of daily activities. Our aim is to make sure that most of them reintegrate to the society and continue to live their life, ”- said Prof. Mykola POLISHCHUK, Neurosurgeon, the President of the NGO “Ukrainian Anti-Stroke Association”.

Dr. Maxim PEREBIYNIS

Dr. Maxim PEREBIYNIS, Subcommittee Chair, Ukrainian Parliament’s Committee on National Health, Medical Assistance and Health Insurance, answered the questions about the next steps the state needs to take in order to control stroke: “At the level of the Government, the Parliament and The President’s Office we are working to develop a program aimed at setting up a network of specialized stroke centers in Ukraine, with the involvement of the World Bank.

There are hospitals that already have trained doctors and necessary facilities, but many more are needed. However, a lot of work has yet to be done to properly plan the network of stroke centers, which should be located so that patients are delivered to the hospital on time (transportation should take less than 60 minutes).

To start with, it is necessary to analyze the existing institutions, technical and human resources in order to properly plan the network of these centers. Luckily, we don’t have to “reinvent a wheel”, we just need to implement what works well around the world. ”

 

Prof. Serhiy MOSKOVKO

Professor Serhiy MOSKOVKO, Neurologist, scientific adviser to Stroke Unit at Vinnytsia Oblast Psychoneurological Hospital, member of the Working Group under the MOH of Ukraine: The Working Group has drafted requirements for health care facilities that provide medical assistance for acute stroke. Compliance with these requirements demonstrates the hospital’s ability to provide high-quality stroke care. Overall, these requirements are an based on the requirements by the European Stroke Organisation adopted in many European countries. With institutions that meet these requirements, the NHSU will sign appropriate contracts in 2020 and will pay for the treatment of patients with stroke at an increased rate under the Guaranteed Medical Services Program.

We very much look forward to understanding and cooperating with the new team at the MOH of Ukraine. Our common goal is to make sure that every stroke patient in Ukraine has access to high-quality care and that hospitals that can provide such effective care have adequate supply for all the essentials, including alteplase, the drug for thrombolytic therapy. We need to significantly increase the number of thrombolyses in the country, then this will affect public health and mortality rates. For example, there are over 25,000 thrombolitic treatments performed in Poland per year compared with only 400 in Ukraine.

Mrs. Oksana MOVCHAN

Deputy Head of the NHSU Mrs. Oksana MOVCHAN told how the NHSU will fund the delivery of medical care to patients with acute stroke starting in April 2020: “In 2020 the tariff is going to be UAH 19,500 (about €720) per case. The tariff covers the workup for verification of the diagnosis, necessary care, medications from the National Essential Medicines List, excluding drugs provided through the government or local programs (such as thrombolytics), and acute rehabilitation. This tariff is almost three times as high as was paid under the medical subvention. We plan to arrange emergency medical services to deliver stroke patients only to those hospitals where they can receive timely and quality care.”

Mrs. MOVCHAN also emphasized that only hospitals that meet the requirements for acute stroke care will be able to receive payments from the NHSU at an increased rate. They are supposed to have all the necessary equipment and specialists to timely diagnose and treat stroke, in particular the equipment for neuroimaging: CT and / or MRI. The NHSU will not only pay for the service, but also monitor whether or not the hospitals comply with the terms and conditions of the contract. “In particular, this care package is absolutely free of charge for the patient, and hospitals cannot charge patients or families for this service,” Mrs Movchan said.

Dr. Lyudmila LYPOVENKO, Head of the Neurological Department, the Second City Hospital in Bila Tserkva, shared her vision of the situation at the regional level: “As early as 2011, we began to perform systemic thrombolysis and have appreciated the difference between modern and old stroke care. In 2016, we set up a modern Stroke Unit with all the equipment and a multidisciplinary team. Now all stroke patients from Bila Tserkva and surrounding villages are referred to our hospital. A stroke patient who is a candidate for thrombolysis, bypasses the emergency department and goes directly to the CT scan, where the treatment is started immediately. We have done a lot to properly organise care pathways, however at times we are still facing a lack of thrombolytics provided by the state or local government. In 2019, we performed thrombolytic therapy in 55 patients, although according to the state program, we received the drug for only 10 cases. ”

Main Points:
• Every year, about 150,000 strokes occur in our Ukraine.
• Stroke and cerebrovascular disease are the second cause of death (more than 100,000 deaths per year or 13-15% of all deaths) and the leading cause of acquired disability in adults.
• Stroke mortality in Ukraine is several times higher than in Western Europe.
• High-qualitative stroke care is inaccessible, and 30-40% of stroke patients die within 1 month of onset.
• Stroke can strike at any age, and one third of stroke patients in Ukraine are people of working age.
• Ukraine has endorsed the European Stroke Action Plan for 2018-2030 and is moving towards a national stroke strategy aimed at reducing the burden of the disease.

Thus, taking into account the Ukrainian Government’s Action Plan goal to reduce the mortality rate along with the epidemiological situation in Ukraine, we emphasize the urgent need to create in Ukraine a network of healthcare facilities that provide assistance to patients with acute stroke (120-150 Acute Stroke-Ready Hospitals or Stroke Units and 40-45 Stroke Centers).

In order to provide high-quality care, timely imaging of the brain, its vessels and the heart as well as laboratory tests and evidence-based treatment, including IV thrombolytic therapy (if not contraindicated), should be guaranteed to all acute stroke patients.

This approach will reduce the burden of stroke for individuals, their families, local communities and the state as a whole.

Dr Marina GULIAIEVA, Ukrainian Anti-Stroke Association

Dr Dmytro LEBEDYNETS and Dr Mychilo Tonchev

Dr Yuriy FLOMIN, Ukrainian Anti-Stroke Association

 

 

Prestige-AF: Imperial’s Horizon2020 projects showcase at the European Researchers’ Night

Prestige-AF: Imperial’s Horizon2020 projects showcase at the European Researchers’ Night

First published on Imperial College London website
Written by Siobhan Markus

The European Researchers’ Night was an energetic festival of scientific exploration at the Natural History Museum (London) on the 27 September.

The Natural History Museum opened its doors after hours for a festival of scientific exploration called The European Researchers’ Night on 27th September. The tangled ‘world wild webs’ as went the theme of the night welcomed the public to interact with an eclectic mix of research and science from pop-up displays to one-on-one conversations over a pint in the ‘EU Pub’ and ‘Dialogue Den’. For the Research Project Management Office (RPM) at Imperial College London, it was the opportunity to bring four Horizon 2020 research projects EAVI2020EDEN2020PRESTIGE-AF and PERFORM2020 into the interconnectivity.

The delivery of these projects’ consortium, financial and communication management are coordinated by the RPM team and it was a no-brainer for the team to take these four projects, which are funded by the EU under the Horizon2020 program, and be part of the European Researchers’ Night.  The projects’ scientists had a lot of fun showcasing their research in an interactive and engaging way and it was clear from public interest, the social impact that research fosters and is amplified through public outreach events such as this.

The European Researchers’ Night is another EU-funded initiative, and Dr Marta Archanco, a project manager of the RPM team, explains that regular engagement in public outreach events is not only a funders’ requirement but it serves as a conduit in which scientists can express why their research matters while furthering the projects’ social impact. For this particular event, Marta says “what many people may not realise is that this event occurs simultaneously across Europe for one night of the year. Last year, during the 2018 Night, in cities across Europe over 1.5 million people were connected with science. This is a beautiful thing and we are so proud to have our Horizon2020 projects apart of this public event.”

Please read the full article here.

Upper limb control after stroke: How best?

Upper limb control after stroke: How best?

First published on ARNI Institute for Stroke Rehabilitation website

Loss of arm function is a very common problem after stroke. Put bluntly, if you have a stroke, it causes lasting damage to the part of your brain that controls movement in your arm. Stroke survivors may experience multiple upper limb symptoms resulting in complications such as weakness, planning and co-ordination problems, changes in the muscles (spasticity & flaccidity), subluxation, contracture, pain, swelling and a host of other symptoms and combinations of symptoms. The resulting presentation can render the upper limb virtually ‘non-functional’.

A well-known feature that can creep is called ‘learned non-use’, where the stroke survivor quickly gets very good at doing most reaching, grasping and releasing tasks with their less-affected, functional arm… ultimately him or her to forego efforts to improve the more-affected arm. Which is not good at all. Stroke survivors really want to know therefore whether intensive rehabilitation really does improve their upper limb motor control processes and reduce their impairments. And if it does, how should they go about getting this/doing it?
There is converging evidence that more therapy might result in better outcomes: current evidence suggests that intensive rehabilitation therapy helps people regain movement in their affected arm in the first few months after stroke. However, stroke survivors get to believe that little (if any) improvement can be made later on, which is sad, because we know this is not true.

Regaining lost movement may be possible many years after suffering a stroke, thanks to intensive rehabilitation therapy methods and inclusion of some principles, concepts and augments into rehab programmes, one of which is the use of robots. With the right therapy combinations, people can see improvements in movement, everyday function, and quality of life. Witness, for example, data which has emerged as a result of survivors attending the Queen Square (London) Upper Limb programme. See report in ACNR Journal. A majority improved in key clinical scores of motor impairment and arm function measured at admission and discharge and retain these improvements at 6-week and 6-month follow-up. Moreover, these are people improving months to years after their strokes occurred.

Is it the higher dosages of physical therapy/task-practice? Is it the combination of robotics and related augments alongside therapy/task-practice (therapy/task-practice aimed primarily at ramping up the dosage of repetitions on tasks)? For sure, as the RATULS Trial has emphasised, we need adequately powered dose-finding studies of promising interventions, tailored to targeted subgroups which also take into account potential cost-effectiveness to better understand the parameters involved.
Please read the full article here.

Exhibition of the art work of stroke survivors and patients with other brain impairments held at International medical congress in Bulgaria

Exhibition of the art work of stroke survivors and patients with other brain impairments held at International medical congress in Bulgaria

On October 4-6, 2019, the 5th National Congress with international participation of the Bulgarian Society of Neurosonology and Cerebral Hemodynamics was held in Sofia, Bulgaria.

An excellent scientific meeting organized by Acad. Prof. Ekaterina Titianova, provided the opportunity to hear the latest update in stroke treatment and application of Neurosonology, exchange ideas and establish platform for mutual collaboration. The added value was the charming exhibition of the art work of stroke survivors and patients with other brain impairments, highlighting the importance of the life after stroke domain. It was a great example of joined forces of professionals and survivors in the fight against stroke.

The congress was multidisciplinary and integrating the interests of different specialists – neurologists, neurosurgeons, angiologists, interventional specialists, etc. Over 180 delegates from Austria, Bulgaria, Israel, Italy, Republic of North Macedonia, Serbia and Spain, students in medicine, nursing, kinesitherapy, medical rehabilitation and ergotherapy from various medical universities, National Vasil Levski Sports Academy and universities in North Macedonia.

The forum was dedicated to the latest developments in ultrasound diagnostics of the nervous system with a focus on stroke, which continues to be the second cause of death in Bulgaria.

Within the international symposium Prof. Anita Arsovska from North Macedonia, who is also a SAFE Board member gave a presentation on “Optimal management of high risk asymptomatic carotid stenosis”.

Stroke Survivors’ Needs in Israel: Rehabilitation in the patient’s home needs better support

Stroke Survivors’ Needs in Israel: Rehabilitation in the patient’s home needs better support

“The patients and their families have difficulties in assessing the quality of care they are receiving. In addition, there often are communication difficulties, whether due to language or cultural differences and the family at home have no-one with whom they can consult on such issues. They have no criteria for assessing the quality of the treatment and in fact can be completely alone, particularly in the periphery, where choices are very limited” says Pnina Rosenzweig, President of the stroke support organisation in Israel, the Neeman Association.

SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?
PR: Given the projected increase in the number of stroke cases and the increase in the proportion of patients in need of rehabilitation, there is no doubt that inpatient rehabilitation solutions currently provided by the health care system will have difficulty responding to the huge shortage of rehabilitation beds in the hospitals, especially in the periphery. They will not be able to meet the expected burden of stroke and to provide optimal treatment to stroke survivors.
One of the solutions offered today in Israel and around the world is to provide rehabilitation in the patient’s home. This solution has many advantages. Among the benefits of providing rehabilitation in the patient’s natural environment are reducing the risk of being hit by dangerous infections and the huge costs on the public system.
On the other hand, the need to provide rehabilitative care to stroke survivor patients with complex needs calls into question the ability to respond to these needs. In the rehabilitation phase, these patients usually require many intensive medical and rehabilitative services and special teamwork.

SAFE: What would be the solution, i.e. what is your organization’s position regarding this issue?
PR: The proposed solution is to establish a system of regulatory and objective controls to test the quality of the rehabilitative process and treatments provided in the patient’s home to people with stroke. The definition of such a monitoring system would include quality indicators of the stroke survivor’s rehabilitation and audit over time. The quality indicators will examine both the quality of medical rehabilitation and the patient and family experiences, particularly their perspective on the rehabilitation process.
The final audit data will be published for decision makers in the health care system, the families of patients after stroke and general public. This publication will motivate the health system to reward only systems that will provide quality rehabilitation and the families of patients to choose only these systems, which provide optimal rehabilitation to for their family’s member.

SAFE: Please tell us more about your organisation.
PR: There are more than 120,000 stroke survivors in Israel and it is estimated that some 18,000 individuals join their ranks each year.

In 1996, families of stroke survivors banded together to create the Israeli NGO, the Neeman Association. Their mission was – and is – to reduce the morbidity of stroke in Israel, improve the medical and rehabilitative processes provided to the survivors of the stroke, to promote the health and well-being of stroke survivors and to support families.

Among the most significant breakthroughs of the Neeman Association in recent years has been its strategic plan to improve stroke prevention and care at the national level. The Neeman Association collaborates with Israel’s Ministry of Health, international specialists, decision makers and strategic leaders in medical care and rehabilitation.

In 2017, the Neeman Association was awarded first prize by the World Stroke Association for its advertising campaign to raise public awareness of stroke symptoms and the life-saving value of immediate emergency care.

Another key focus of the Neeman Association is to improve the quality of life for stroke survivors. Today, Neeman conducts fourteen social clubs in community centers throughout Israel, directed by professionals and operated largely by volunteers. For hundreds of stroke survivors and their families, the social clubs are a home and a haven.

#DontBeTheOne: Wave the flag for stroke awareness on this year’s World Stroke Day

#DontBeTheOne: Wave the flag for stroke awareness on this year’s World Stroke Day

To help create a buzz and to drive awareness of risks and prevention a number of stroke organisations around the world are quite literally flying the flag for our ‘Don’t Be The One’ campaign at their events to mark World Stroke Day. These events will be shared on social media as part of a virtual relay. SAFE and WSO are calling upon member organisations to register their plans for the Relay on the Global Map of Action on the World Stroke Campaign website, as well as any other plans they might have for World Stroke Day events and activities.

To help show that an event is part of a global campaign effort and the relay the WSO has produced some assets (attached under links below):

On the day of your event, take high resolution photos of local participants with the campaign flag and share them with Sarah Belson from the World Stroke Organisation directly at Sarah.Belson@stroke.org.uk. If you have  social media be sure to share photos from the event using the campaign hashtag #DontBeTheOne so that the WSO and SAFE can share content on their Twitter and Facebook channels.

In addition to supporting the World Stroke Campaign, SAFE would like to invite you to visit a website for stroke prevention (www.strokeprevention.info) now available in five additional European languages: French, Polish, Portuguese, Russian and Spanish. You can learn about 10 modifiable stroke risk factors and start taking actions today to reduce your own risk of stroke. You can support SAFE by spreading the news about this website and following us on social media, Facebook and Twitter. Show us your support by using the #StrokePrevention hashtag.

 

Stroke Survivors’ Needs in Luxembourg: No intensive aftercare centre for stroke victims

Stroke Survivors’ Needs in Luxembourg: No intensive aftercare centre for stroke victims

Chantal Keller, President of Blëtz Asbl

“Luxembourg needs an intensive aftercare centre where patients can go for three to six weeks in the mornings as well as in the evenings to receive an ongoing aftercare treatment for physiotherapy, speech therapy, occupational therapy in addition to psychological therapy. We also want families and friends to get the psychological support. Last but not least the patients need to be supported and assisted in being reintegrated back into the workplace” said Chantal Keller, the President of Blëtz Asbl, stroke support organisation from Luxembourg, a member of SAFE.

SAFE: What is the one issue related to the life after stroke in your country that you think needs special attention?
CK: The single most important issue in Luxembourg is that there is no intensive aftercare centre for stroke victims.

The current structure for stroke victims aftercare which is in place is that there are four rehabilitation centres which are located in the city of Luxembourg, Dudelange, Wiltz and Steinfort. They offer aftercare treatment for a period ranging from six months up to a maximum of twelve months.

At the moment the only aftercare structure which is available after the rehabilitation centre is in the form of an out-patient treatment at the physiotherapist as well as the speech therapist. These out-patient treatments mean that the stroke patient is dependent on a member of the family to take them there as taxis are not reimbursed by the Caisse Nationale de Santé (CNS) – the Luxembourgish Health Service. In addition to this the cost of other necessary aftercare treatments such as occupational therapy or going to the psychologist are not covered.

SAFE: What would be the solution, i.e. what is your organization’s position regarding this issue?
CK: Blëtz Asbl. Is actively working on setting up meetings and progressing with our goal which is to be able to offer an intensive aftercare stoke victims centre in Luxembourg. To date, we have the support and are under the high patronage of Her Royal Highness the Hereditary Grand Duchess.

We have also had meetings with the mayor of the commune of Bettembourg, Mr. Claude Zeimetz as well as with the mayor of the commune Mondorf-les-Bains, Mr. Steve Reckel in order to introduce and advance the urgent need for Luxembourg to have an intensive aftercare centre. In addition to this we are in the process of getting a meeting in place with the Finance Minister of Luxembourg, Mr. Pierre Gramegna. On the 30th of September we have a meeting with the Health Minister of Luxembourg, Dr. Jean-Claude Schmit.

Furthermore, we are currently in the process of getting stroke units certified in four hospitals, namely in the Centre Hospitalier Emile Mayrisch, Esch-sur-Alzette, Centre Hospitalier de Luxembourg, Hôpital Kirchberg which are both in Luxembourg city as well as the Centre Hospitalier du Nord, Ettelbruck.

Blëtz Asbl. Is actively promoting medical and scientific research. On the 27th of October, the World Action Day for Stroke Victims, we are pleased to be able to announce a conference with Dr. rer. Medic. Marcus Wagner, MPH, a senior expert from Stiftung Deutsche Schlaganfall-Hilfe. He was formerly the President from 2008 – 2013 of the Europäische Schlaganfallpatienten-Organisation Stroke Alliance for Europe (SAFE) and is the Vice President of this organization since 2016. At this conference we will be showing a film from the Stroke Alliance which will be adapted for Luxembourg as well as having the world première performance of a song written by Claudine Muno, accompanied by Remo Cavallini about aphasie which has been commissioned and composed for Blëtz Asbl.

SAFE: Please tell us more about your organization.
CK: Blëtz Asbl was founded in 2013 by me, Chantal Keller, who was affected by a stroke, in addition to Marc Schommer, a stroke survivor and Claudia Heiderscheidt-Landa, whose husband suffered from a stroke.

Blëtz Asbl’s mission is to help and to offer support to stroke and aphasia patients, their families and friends. We wish to raise awareness and to offer information to patients with brain injuries as well as giving them support for their individual needs.

More about Blëtz Asbl

A book called “You have to be a fighter! Life after a stroke” has been published by Chantal Keller, President of Blëtz Asbl. And contains firsthand accounts of human beings who share their stories and show how much human potential there is for resistance and creativity in the face of adversity.

A stroke is a major traumatic event in the lives of those effected, their families and friends. Blëtz Asbl runs a helpline and offers support. Personal meetings can be arranged.

Blëtz Asbl also promotes medical and scientific research in this particular area.

And finally, every month Blëtz Asbl hosts an open day which covers different themes related to stroke and aphasia patients.

IRENE COST Action Meeting: Alleviating disparities in stroke care and improving outcomes after stroke

IRENE COST Action Meeting: Alleviating disparities in stroke care and improving outcomes after stroke

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.

Stroke Survivors’ Needs in Sweden: A follow up system after stroke

Stroke Survivors’ Needs in Sweden: A follow up system after stroke

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.