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According the Turkish Statistical Organisation, one person dies every 14 minutes because of stroke in Turkey and 40.000 people died of stroke in 2017.

As much as these data seem horrifying, there is a hope for change. Since recently, there is a stroke support organisation in Turkey, dedicated to raising awareness and helping stroke survivors and their families. The organisation is called BEYINDER and since December 2017 it is a full member of SAFE. We used the opportunity to ask some questions to the Board of this organisation, made of medical experts whose enthusiasm led to forming the patient support organisation and joining SAFE. Below are the answers sent to us by Prof. Derya Uluduz from Istanbul University, Cerrahpasa School of Medicine, on behalf of the whole Board of the BEYINDER organisation.

1. How and when was your organisation BEYINDER formed?

In November 2015, we participated one of the SAFE meetings on behalf of Turkish Neurological Society and we were very impressed about what SAFE trying to do. In fact, as Turkish stroke neurologists we were doing many acitivities but all were based on individual efforts. In this meeting we had the feeling that we need to have a patient society to influence and extend to all country and we should be a member of SAFE organisation. SAFE was doing enormous work and we needed to be part of this. People in SAFE were so friendly, they encouraged us for this and tried to explain the process step by step. Especially I should thank to dear Sarah Belson, Marina Charalambous, Pnina Rosenzweig and Anita Arsovska. I appreciate them for their encouragement and motivation. We first tried to form the organisation under the auspices of Turkish stroke society but the problem was one third of the board should be made up from stroke survivors, so this could not be done. We need to form a separate non-profit organisation. We tried to find patients who can participate to this organisation and one of our board member suggested to provide us an Office place for the organisation. Another board member who was our patient was a certified public accountant who knows the paperworks for registration process. We provided a sample constitution form from Sarah Belson to arrange ours and at the end BEYINDER was formed in August 2017.

2. Are you covering with your activities the whole country or some specific regions?

We are covering the whole country. We are in contact with all stroke centers in order to reach more stroke patients. The main office of the society is in Istanbul. Our future plan is to open branch offices in some other cities. Also we want to include family physicians in primary care to our organisation and collaborate with them.

3. What is the situation with stroke in Turkey, how many new strokes do you have per year and is the level of treatment at a satisfactory level, in your opinion?

Even the epidemiological studies are limited in Turkey, the incidence of stroke is high and it is increasing even in young population. The incidence for ischemic stroke  was about 119/100.000 in 1990 and was 134/100.000 in 2010, for hemorrhagic stroke it was 32/100.000 in 1990, and 43/100.000 in 2010. Although mortality rate is decreasing over the decades, stroke is still the second leading cause of death in our country. According the Turkish Statistical Organisation, one person died every 14 minutes because of stroke in Turkey and 40.000 people died with stroke in 2017.
The population does not have enough knowledge and are not aware of the acute stroke treatment and primary/secondary prevention. But the good news is that for 2 years Turkish Ministry of Health and Social Security institution have started to work hard to enhance the acute stroke treatment strategies and facilities in all over Turkey. For primary prevention, public service announcements on television and billboards around country advice people to stop smoking, control blood pressure and increasing physical activity. But we still dont have enough well organised stroke centers for acute treatment and transportation systems are still big problem in big cities for early management in stroke. Neurorehabilitation facilites are generally limited to big cities mainly due to lack of facilities and qualified person in stroke rehabilitation. In big cities stroke survivors can get benefit from the govermental rehabilitation centers or physical therapists are able to visit patients at their homes if necessary. We need to increase the awareness of primary and secondary prevention in stroke and force the goverment to increase the facilities and qualified person in stroke. Another problem is mainly physicians hesitate to prescribe anticoagulation due to side effects in patients with atrial fibrillation leading to stroke.

4. How is your organisation engaged in raising awareness of stroke and what are you preparing for the World Stroke Day, on 29th October this year?

After being a member of SAFE organisation we have continued our attempts for the awareness of stroke under the umbrella of SAFE. First we translated and prepared the posters about the risk factors of stroke and hanged them on the most seen places of clinics and outpatient clinics of neurology at several hospitals around the country. By this way, the patients admitted with any neurological complaints as well as the stroke survivors and their relatives had been able to learn the risk factors of stroke which is important for the primary and secondary prevention.
We have begun to publish a free public magazine quarterly named BEYİNDER which concerns with all about stroke, current knowledge of risk factors and important points about stroke, healthy diet, physical exercise, ways to increase quality of life after stroke, and etc.
On World Stroke Day some of our board members attended TV programs about stroke. On the 2018 European Stroke Awareness day we held an organisation in a big research hospital inviting the stroke survivors and their relatives. A stroke neurologist gave a talk about the risk factors, primary and secondary prevention. A  physical therapist demonstrated some exercises for rehabilitation. In the social programme, after the lunch we went to the garden of the hospital and flied many colourful balloons to the sky.

5. What are the future short term plans for BEYİNDER?

– We will revise our website including the list of all stroke neurologists in Turkey, so stroke survivors will be able to reach a stroke specialist close by. People will have chance to ask questions through website contact area and get the answers from the experts.
– Patient education school for stroke survivors and public will be held twice a year. Each will be at different hospitals with different topics of stroke.
– In September, we are going to hold a garage sale and planning to sell new and vintage clothes, furniture and different kind of donated objects together with some of our patients. Our quarterly public magazine will be still published.
– If we can solve the financial part, one of our aim is to hold the first national stroke. We are not sure if we can manage this in the World stroke day period but, the congress will be without any charge and approximately 100 stroke survivors and one relative will be invited. During 2.5 days experts will give educations for primary prevention and secondary care, rehabilitation, cognition and increasing quality of life and their relatives how to combat with patients problems after stroke.
– On the World Stroke Day, on 29th October, we are planning to visit some schools to engage and educate the pupils on stroke in an enjoyable way. Also we plan to do visit the Ministry of Health and talk about the problems and needs of stroke survivors in Turkey. In one of our hospitals we will have a party for stroke day, increasing the awareness, we will invite stroke survivors and organize an arbor day in selected area in the hospital garden.

6. This year’s topic for the World Stroke Campaign is Life After Stroke. How would you describe the quality of life after stroke for people in Turkey?

Stroke rehabilitation and long term care became more important with the recent advances in stroke patients. One of the most difficult aspect of having a stroke is the adapting to life for both the patients and caregivers. Comprehensive stroke units provides multidisciplinary team approaches for acute treatment and rehabilitation for stroke patients. Although the number of dedicated stroke centers has been increasing in last years, there are still some regions without stroke centers in Turkey. In Turkey even the importance is known, rehabilitation program after stroke is mainly bounded by physical motor rehabilitation that is probably due to lack of qualified therapists specialized in speech therapy, swallowing therapy, occupational therapy and psychological therapy. Unfortunately, a very small number of centers in Turkey can provide such comprehensive therapies. Nevertheless, government is making efforts to educate and establish stroke rehabilitation team in recent years.

Please read next:  SAFE represented stroke patient voice at ESOC 2019

There is also lack of awareness about the importance of assessment of quality of life in stroke patients. Measurement of quality of life is not routinely used in many centers in Turkey. We also do not have enough time for assessing the quality of life in outpatient clinics due to high number of patients we should examine daily.

There is a lack of public awareness about the importance of rehabilitation after stroke. We are planning educational campaigns in order to increase public awareness about the importance of rehabilitation after stroke. Furthermore we should try to force the government to educate specialists and to increase the number of household stroke care system like home care service, transport of patients to the rehabilitation facilities. Also general health insurance covers a short term period of rehabilitation, that should be extended.

Our aim is to communicate with the government in order to increase the number of rehabilitation facilities and also most importantly specific rehabilitation centers for stroke patients. Turkish Ministry of Health provides home care service for only bedridden patients and in place health service for those who live in places such as rest home, prison or nursery. Also family physicians coordinate the home care services. Patient’s all health conditions are assessed and physicians decide the need for home care service. Then follow-up and treatment plans are made according to the result of assessment.

Although there are services that ensures medical care and rehabilitation for stroke patients, family members in the home environment are also very important for everyday living of stroke patients for whole life. According to the the family structure in Turkey, most people think that the care of patients and elderly people is under the responsibility of the family members. Because of this cultural customs relatives think this is a duty and caregivers in Turkey have many psychological comorbidities during patient care. Caregivers have many responsibilities such as physical rehabilitation help, feeding, hygienic care etc. In Turkey we don’t have day care facilities or long term inpatient hospitals for those people. There should be psychological support as well as social support for caregivers to increase their awareness about the importance of their role, reduce burden of care. One of the priority aims of BEYİNDER is to establish appropriate social support systems for the caregivers.
Physical conditions are not well established for disabled people in Turkey, but recently there is increasing awareness about the functional needs for daily living of disabled patients in the community forcing the goverment.

7. Your organisation is a full member of SAFE since December 2017. What made you join SAFE and do you consider it’s useful for organisation to cluster this way?

We perceived that there is a huge need for this kind of organisation in our country. We formed BEYINDER to help stroke survivors and to increase awareness of stroke in the community, we planned to be a part of an international organisation. Fortunately we became a full member of SAFE at December 2017. SAFE is an organisation aimed to driven-up stroke at European political agenda and to educate population about stroke primary and secondary prevention.
It was important for us to provide standardization of our organisation and become widespread to all country. Working together with SAFE like a team facilitate to accomplish the projects and more voices more ideas increase our awareness and perspective as well. SAFE works enormously, helps the organisations without any egocentrically without insisting just suggesting. This makes us feel good and work harder and harder for SAFE. SAFE is like a best teacher and we are trying to work hard and to do our best to get praise. SAFE is motivating us much. And also to learn more from an international organisation will increase our knowledge.