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.
- 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.
- We help individuals, stroke survivors and their families in three ways. Financially, by lending to survivors physiotherapeutical equipment and guide them after leaving hospital.
- 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.
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:
- 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.
- 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.
- 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
- https://www.stroke.org.uk/sites/default/files/the_burden_of_stroke_in_europe_-_challenges_for_policy_makers.pdf
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.
May 25, 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.
May 24, 2019
“For stroke survivors the real battle begins after they have been discharged from the hospital. The bio-psycho-social burden on any society (family unit), if they are not properly prepared or organized, can very quickly become devastating” said Hrvoje Jurlina, M.D., stroke survivor from Croatian Stroke Society.
SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?
HJ: As in every country the healthcare system has its flaws. The root to a great percentage of these imperfections within the healthcare system lies in the lack of logistical coordination within the system itself. For example: ”If a bus driver does not know his own bus root how can anyone on board the bus be expected to arrive successfully to their desired destination?” (The Bus symbolizes Stroke, the bus driver represents the healthcare system, the bus route substitute as ‘Life after Stroke’, the bus stops depict the specific levels of care, therapy, and rehabilitation the stroke survivor must go through, and the desired destination of the stroke survivor within that bus route represents the desired level of recovery from the burden of stroke.) This is very much so the situation in many healthcare systems in regards to stroke patients. Once the stroke survivor is released from the hospital , the stroke survivor and their primary caregiver (”get on that bus”) are given very little if any information regarding post hospital recovery procedures and care options. The information given is most often very superficial and lacks a realistic picture of what awaits the stroke survivor and their primary caregiver in the immediate and distant future.
SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue?
HJ: The need for some form of standardized criteria regarding recovery, care options as well as an insight into patient rights for stroke survivors and their primary caregivers is thoroughly needed. ‘ The bus route must be laid out, all of the bus stops must be clearly marked so that the stroke survivor as well as their primary caregiver may successfully navigate and reach their desired destination, which is the recovery from the burden of stroke. To achieve these goals a firm foundation must be put in place in which an alliance of all parties involved in the stroke survivors rehabilitation and recovery can come together in order to maximize a successful post stroke outcome. Without complete collaboration and cooperation (within all branches of health care, social services, patient advocate groups, and the stroke survivors primary caregiver) no true recovery from the burden of stroke can fully be achieved. This continuous burden not only inhibits all aspects of the stroke survivors life but directly influences the lives of their family members and society as a whole.
SAFE: Please tell us more about your organisation.
HJ: Croatian Stroke Society (Hrvatsko društvo za prevenciju moždanog udara) was founded in 1997 with the aim to prevent stroke among persons at risk and stroke survivors, and to improve diagnostics, treatment and rehabilitation, based on the latest scientific knowledge. Raising the stroke awareness in Croatia, which will lead to the reduction of stroke by creating a healthier and more conscious society, is our vision. The Croatian Stroke Society is divided into two branches which are collaborating – stroke survivors section and professional/scientific section. Our activities are focused at educating the population, stroke survivors, caregivers and the medical staff about stroke to improve diagnosis, treatment and rehabilitation. The stroke survivors section members are primarily involved on raising the stoke awareness among the population including stroke survivors and their family and caregivers organizing public campaigns, patient groups, lectures with stroke risk assessments, activities on social media channels, etc. The professional/scientific section members are primarily involved on raising the stroke awareness and education of health professionals as well as providing the medical scientific background to the public and stroke survivors. Croatian Stroke Society is proud member of the Stroke Alliance for Europe, European Stroke Organization and Central and Eastern European Stroke Society.
May 18, 2019
“Having attended the SAFE Regional Conference in Paris, I was struck by the need for us as stroke survivors to look past our own borders and countries and to focus on what can be done to ensure that the EU Institutions recognise the burden of stroke across Europe on survivors, their carers and families, and the need for stoke to be recognised as its own incredibly important entity, rather than diluting it in the wider classification of cardiovascular diseases” said Martin Quinn, stroke survivor from Ireland.
We at SAFE are thankful for Martin’s feedback and subsequent engagement after the SAFE Regional Conference in Paris. Sharing his views and actions in the blog post below, we hope to inspire other SAFE members from across Europe, just ahead of the upcoming EU elections, to be held between 23 and 26 May 2019.
“My thoughts after the Paris Conference were filled on what I could do as a stroke survivor to further this discussion and the recognition required on the burden of stroke across Europe. I felt that it was important that I should play my part as a stroke survivor from Tipperary in Ireland and that perhaps I could influence the process in some way and be a voice for those survivors that had no voice in the ongoing battle against stroke.
I am the type of person with the attitude of Benjamin Franklin who once said, “Don’t put off until tomorrow what you can do today”, so immediately on returning home from Paris I put pen to paper and wrote to my local media about my attendance at the Conference; on the implementation of the Stroke Action Plan for Europe, on the event held under the patronage of the Romanian Presidency of the Council of the European Union on the role of policy in tackling stroke which took place in Brussels, and on ongoing stroke support organisation activity across Europe.
The local media immediately picked up on the story and ran articles in the local newspapers and I was interviewed about the Conference on two local radio stations. There has been much positive reaction to this story and it has been widely shared amongst stroke survivors and their organisations.
With impending European Elections I wanted also to get this message out to outgoing Irish Members of the European Parliament and to candidates contesting the elections for the first time. So I again put pen to paper and wrote to every Irish MEP and to first time candidates that I could get contact details for. In my letter to them I informed them of my attendance at the Paris Conference and of SAFE’s goal to decrease the number of strokes in Europe by advocating for better prevention, access to adequate treatment, post-stroke care and rehabilitation. I went on to refer to the Brussels event, which was held under the patronage of the Romanian Presidency of the Council of the European Union, and I attached the report from the event for their consideration. In my letter I said that for me as a stroke survivor it was very important to hear of patient representatives and clinical experts calling on the EU Institutions to recognise the burden of stroke as its own incredibly important entity, rather than diluting it in the wider classification of cardiovascular diseases, and on the request to the EU to facilitate discussions between its Member States on the implementation of the Stroke Action Plan for Europe. I concluded by saying that joining forces with EU policy-makers to address the burden of stroke that stroke survivors, their families and the overall society are currently facing is essential, as is the support of our MEP’s in the implementation of the Stroke Action Plan for Europe.
As luck would have it on the day of one of my interviews on my local radio station, who should I meet in the studio corridor only Deirdre Clune, Fine Gael MEP for Ireland South (Member of EPP Group in Parliament). I was previously acquainted with Ms. Clune so having exchanged pleasantries I then had a brief word with her about my correspondence to her on the Stroke Action Plan for Europe and I then headed into studio for my own interview. Later on however I had a further opportunity to meet Ms. Clune and to speak to her in more detail on the matter. She thanked me for my correspondence and for sending her a copy of the Brussels report and she committed if elected to following through on the proposals and objectives as outlined in the report to further the implementation of the Stroke Action Plan for Europe.
Further support for the implementation of the Stroke Action Plan for Europe has been forthcoming to me in response to my letter to candidates from Ireland South Fianna Fáil candidate Billy Kelleher (ALDE Group in Parliament), from Ireland South Labour candidate Sheila Nunan (PES Group in Parliament) and from Dublin Independent Socialist candidate Clare Daly.
Sheila Nunan submitted a detailed response stating that she would call for the full implementation of the UN Convention on the Rights of Persons with Disabilities, including stroke survivors at EU level and will work with disability organisations and organisations like SAFE & IHF to achieve this. She added that she will promote and support new measures to ensure that all stroke survivors have access to inclusive education, with personalised supports, and an inclusive workplace.
The Ireland South Green Party candidate, Grace O’Sullivan (Greens/EFA Group in Parliament), said that she would keep my letter and report attachment on file for review should she be successful in getting elected.
I eagerly await responses from the others!” concluded Mr. Quinn.
<Featured Photo: Martin Quinn meets Ms. Deirdre Clune; Credits: Martin Quinn>
