Stroke Survivors’ Needs in Ukraine: Special needs of stroke survivors neglected both by society and government

Jun 14, 2019

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

Second SAFE Regional Conference held in Krakow, Poland on 12th June

Jun 13, 2019

SAFE member organisations from Eastern and Central European cluster gathered on 12th June in Krakow, Poland 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
• MERZ Spasticity project
• Round-up of activity from attending members

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

SAFE’s political activities presented and promoted during 30th Dubrovnik Summer Stroke School

Jun 10, 2019

At the occasion of the 30th Anniversary of the Summer Stroke School in Dubrovnik, Croatia, the Croatian Academy of Sciences, Department of Medical Sciences published a book “Healthy Lifestyle and Prevention of Stroke and Other Brain Impairments”. SAFE Board member, Prof. Anita Arsovska from North Macedonia, contributed to this book with information about SAFE and our political activities.

30th Dubrovnik Summer Stroke School: Healthy Lifestyle and Prevention of Stroke and Other Brain Impairments, International Course, endorsed by European Stroke Organization (ESO), World Stroke Organization (WSO), European Academy of Neurology (EAN) and World Federation of Neurology (WFN) took place in Dubrovnik, Croatia, at the Inter-University Center, from  3-7th of June 2019.

The scientific programme was exciting and encompassed many aspects of stroke and related disorders (starting from prevention, acute diagnosis, treatment and rehabilitation) delivered by international faculty from Albania, Austria, Croatia, Germany, Israel, N. Macedonia, Serbia and Slovenia. Traditionally, the school was attended by numerous participants (residents and young specialists in Neurology) from Albania, Austria, Bosnia and Herzegovina, Croatia, North Macedonia, Serbia and the Netherlands.

“The Voice of the Stroke Survivor Represented Through Stroke Alliance for Europe” was delivered by Prof. Anita Arsovska (N. Macedonia), SAFE Board Member, with a special focus on the European Stroke Action Plan 2018-2030 and the most important overarching targets that need to be fulfilled by 2030.

Further on, the political activities of SAFE were presented, such as regular Stroke Summits in the European Parliament and the European Commission of the Regions in Brussels, as well as the importance of collaboration with other societies and initiatives (such as ESO, Angels Initiative, WSO etc).

SAFE would like to thank our Croatian colleagues from Hrvatsko društvo za prevenciju moždanog udara, our member organisation, for their support and for enabling this promotion of SAFE’s activities.

Prof. Vida Demarin with faculty and participants of the 30th Summer Stroke School in Dubrovnik 2019.

About 30th Dubrovnik Summer Stroke School

Course Director was Prof. dr. Vida Demarin, FAAN, FAHA, FESO, FEAN, FWSO, Fellow of Croatian Academy of Sciences and Arts, University of Zagreb, Croatia and the Board of Directors consisted of Prof. dr. Roman Haberl, University of Munich, Germany, Prof. dr. Kurt Niederkorn, University of Graz, Austria, Prof. dr. David Russell, Univeristy of Oslo, Norway and Assist. prof. dr. Hrvoje Budinčević, Sveti Duh University Hospital, Zagreb. Colleagues from the Dubrovnik General Hospital participated in the Organizing Committee (Dr Andrijana Bogoje Raspopović, Assist. Prof. dr. Denis Čerimagić, Dr Mira Ivanković and Dr Maro Vodopić) and also served as Course Coordinators (Dr Andrijana Bogoje Raspopović, Dr. Petra Črnac Žuna and Petra Dalić). The Summer Stroke School was organized by the International Institute for Brain Health, Central and Eastern European Stroke Society, Croatian Stroke Society, School of Medicine, University Of Zagreb, Inter University Centre Dubrovnik, WFN Applied Research Group on the Organisation and Delivery of Care and the Society for Neuropsychiatry and co-organized by the Department of Medical Sciences – Croatian Academy of Sciences and Arts.

The 30th Summer Stroke School was accredited by 4 ECTS points and provided an excellent and enjoyable platform to hear great lectures, interact with faculty, share experience and meet colleagues from different countries.

Stroke Survivors’ needs in Slovakia: Socialization of stroke survivors as the biggest issue

Jun 7, 2019

“When patients after stroke meet and can get together with others – even with non-stroke-patients, their self confidence grows, they start to connect with people, and that is for us very important” says Alžbeta Husarovič, the President of the Slovakian Stroke Support Organisation Porážka.sk and a stroke survivor.

SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?
AH: If we have to choose only one issue, it would probably be the socialization. Because with socialization starts all the patient´s effort to ´start over´ and to be able to get back to his previous life as much as it is possible. We believe, that step by step this might be the key  to the mental recovery, which is as important as the physical one.

SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue?
AH: During the last couple months, we at our organisation Porážka.sk are focusing on different activities, which might be helpful to stroke survivors.

We believe that one of those is our Charity run (called Beh neporazených) which unites the  patients with healthy people, who are running to raise money and create better conditions for patients.  This is the most powerful (but also emotional) project of our organization so far, where the socialization of stroke survivors is really visible. Other our project is focusing on small sheltered workshop, where the patients with disability becoming a real paid work. Sheltered workshop is going to be a place where again patients are exposed to real life and can communicate and bond with others.

SAFE: Please tell us more about your organisation.
AH: Our association Porážka.sk was created in 2013 by Alžbeta Husarovič, stroke survivor. We have three important activities.

1. We are trying to spread stroke awareness by organizing various public events such as Unbeaten RUN, Fashion Show etc where we always invite stroke survivors, famous faces and media people.
2. We help individuals, stroke survivors and their families in three ways. Financially, by lending to survivors physiotherapeutical equipment and guide them after leaving hospital.
3. We are going to give to stroke survivors a place, where they can meet, talk, compare each other, rehabilitate and what is the most important, we are going to give them a work.

Photo credits: Porazka.sk Facebook page.

You are twice as likely to die from a stroke if you smoke: Do what you can to prevent it

Jun 4, 2019

Each 31 May, the World No Tobacco Day is being celebrated around the globe by raising awareness about the harmful and deadly effects of smoking and the use of tobacco products. SAFE is trying to raise awareness about the dangers of smoking for another very important reason- Smoking is one of the modifiable stroke risk factors. Many studies suggest smoking almost doubles the risk of stroke and subarachnoid haemorrhage (SAH), a life-threatening type of stroke caused by bleeding into the space surrounding the brain (1). Long-term exposure to nicotine has many negative health effects. Some, such as a persistent cough, are noticeable. Whereas the hidden damage that happens within the brain is not often apparent until it’s too late. Research shows that the parts of a smoker’s brain that control everyday tasks, such as hand-to-eye coordination, are reduced in volume, which can impair its function (2).

According to the Statement given by EU Commissioner for Health and Food Safety, Vytenis Andriukaitis, on a global level, the figures are staggering – there are more than 7 million tobacco-associated deaths around the world each year. This is one of the main reasons why the EU and its Member States are active supporters of a global health treaty – the Framework Convention on Tobacco Control of the World Health Organisation.

“Tobacco consumption is the single largest avoidable health risk, and the most significant cause of premature death in the EU, responsible for nearly 700,000 deaths annually. This is not just a dry number. These are our family members, friends, colleagues. I am particularly concerned about young people taking up vaping and various new products like heated tobacco products and e-cigarettes, which are increasingly being marketed with misleading claims. 29% of young Europeans aged 15-24 are smoking. How many are using alternatives damaging their young lungs?” asked Mr Andriukaitis.

Up to 10% of stroke cases worldwide are caused by smoking

According to the World Health Organisation, smoking is thought to cause around 10% of cardiovascular disease worldwide. In 2008, the highest overall prevalence for smoking was estimated to be in the European Region, at nearly 29%. (3) Thankfully, in Europe, the death rate has fallen significantly over the last two years, but the number of people living with disabilities, as a result of stroke, continues to be a huge problem (4).

“The EU is working hard to protect citizens from the hazardous effects of tobacco use. One of our key milestone measures in the EU’s fight against illicit trade in tobacco products – the European systems of tobacco traceability and security features – became operational on 20 May. This means that consumers will soon see new traceability markings on the packs, together with the required security features. The traceability markings will enable national authorities to track and trace the movements of tobacco packs across the legal supply chain in the EU. In addition, security features will enable public authorities and citizens to determine if a tobacco product on the market is genuine or illicit” said Mr Andriukaitis in his official statement.

In conclusion, we all know smoking is bad for us. It’s been linked with all kinds of diseases, including stroke. But sometimes even the cold hard facts aren’t enough to make us want to kick the habit. If you’re considering cutting down or giving up, please visit SAFE’s website www.strokeprevention.info dedicated to education about stroke risk factors and check out five tips for quitting smoking.

References:

1. James F. Meschia, MD et al. (2014). Guidelines for the Primary Prevention of Stroke. A statement for healthcare professionals from the American Heart Association/American Stroke Association. DOI: 10.1161/STR.0000000000000046. Stroke, 45: 3754-3832.

2. Lim, T. S., Lee, J. S., Yoon, J. H., Moon, S. Y., Joo, I. S., Huh, K., & Hong, J. M. (2017). Cigarette smoking is an independent risk factor for post-stroke delirium. BMC neurology, 17(1), 56.
3. Thun MJ, Apicella LF, Henley SJ. (2000). Smoking vs other risk factors as the cause of smoking-attributable deaths: confounding in the courtroom. JAMA, 284:706–712
4. https://www.stroke.org.uk/sites/default/files/the_burden_of_stroke_in_europe_-_challenges_for_policy_makers.pdf

Stroke Survivors’ needs in Turkey: Stroke consequences not addressed adequately

May 31, 2019

“In our country, our patients are facing several problems after stroke. The number of physical therapy units is adequate, however, we should pay extra attention for the subjects such as lack of training and methods, inadequate speech rehabilitation therapy, lack of environmental physical conditions for stroke cases, and often overlooked dementia and depression after stroke” said Füsun Mayda Domaç, Assoc. Prof, MD, Msc and Vice President of BEYINDER, Turkish Stroke Support Organisation.

SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?
FMD: One of the most noteworthy issues is the establishment of a number of rehabilitation centers by government incentives in Turkey. Although the physical facilities and numbers of the centers are adequate, the lack of physical therapists and physiotherapists, who are well equipped for neurorehabilitation and especially for stroke rehabilitation, is quite lacking. The number of physical therapy sessions that the Ministry of Health has provided free of charge in patients after stroke is insufficient. Although the physicians are willing to start treatment in patients in the early period, the number of free sessions and an inadequate number of equipped personnel negatively affect the success rates. In our country, physical factors create difficulties for the cases of stroke. It is extremely important to reintroduce stroke survivors to an active, disability-free life with an intensive rehabilitation program.
Other important issues we have come across in most stroke survivors are the isolation of social and work environment, fear of not recovering, and psychiatric problems such as depression and anxiety. Besides, vascular dementia can develop due to localization and severity of stroke. However, because we need to examine a large number of patients in a short time due to health policies in outpatient clinics, urgent and important complaints are considered at the forefront and psychiatric cognitive problems can be ignored. This situation complicates and delays clinical recovery in patients.

SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue?
FMD: The short duration of rehabilitation treatment and lack of adequate qualified personnel negatively affect the healing process even though the physical therapy centers are sufficient. In this context, in the neurorehabilitation, it will be helpful to prepare a training CD of physical therapy applications for stroke which explains practices in detail. In addition, neurology and physical therapy branches need to come together and exchange information on neurorehabilitation with joint meetings. Training sets can be prepared in cooperation with the Ministry of Health, and detailed brochures about hints and issues to be considered during physical therapy can be prepared and distributed. The Ministry of Health may be asked to supervise physical therapy centers in more detail and to support fully-equipped rehabilitation centers for stroke rehabilitation. The number of free service periods and sessions can be increased by discussing the necessity of having a long-term and intensive treatment protocol after stroke with the Ministry of Health. Beyinder works intensively on all these solutions.

Due to the health policies in our country, there is not enough time to examine stroke patients in the outpatient clinics. In addition, it is not easy to make detailed evaluations except for the basic complaints. In this respect, assessment forms for depression, anxiety, and cognitive problems can be prepared and asked to fill it with the help of a patient and/or their relatives before their visit and these forms can be evaluated guickly in the outpatient clinics. Assessment forms should be developed and implemented easy-to-read taking into account the health literacy of patients so that they can fill forms on their own. In order to raise awareness among neurologists, information brochures about post-stroke psychiatric and cognitive situations can be prepared and distributed.

SAFE: Please tell us more about your organisation.
FMD: Stroke patients are not alone anymore in Turkey. “BEYİNDER” which is Turkish cerebrovascular diseases patients’ society was established in August 2017 in Istanbul. BEYİNDER is a non-profit, national society for stroke patients, their families, caregivers and also for health professionals. Our aim is to provide help and support for all stroke patients in Turkey and provide public education by accurate information about cerebrovascular diseases.
Our society has a website (link: http://www.beyinder.org/). The web site of our society provides information about our society, understandable information about clinical signs and symptoms, primary and secondary prevention, therapy and rehabilitation of stroke for patients and care givers, information about communication and news about stroke in media. Our society also has several social media accounts including Facebook, Instagram and twitter in order to make people aware of the society and its website.
Official journal of the association began publishing in 2018 and the 4th issue is on the way. Editor of the journal is Prof. Uludüz. The journal provides general information on vascular health of brain for patients. We also send journal to hospitals in order to give patients and relatives at out-patient or in-patient clinics. The online version of our journal is also available on the website.