The National Prevention and Rehabilitation League of Stroke in Hungary is a prominently public benefit organisation. Services include health-preservation, prevention of disease, healing- and medical rehabilitation activities. This is their story, told by Krisztina, the President of this organisation, and Eszter, the volunteer.
The World Stroke Organisation is committed to developing more Stroke Support Organizations (SSOs) and stroke support activities around the world. Supportive activity can include information and advice, peer support, family counselling, rehabilitation therapy or welfare services. We want to promote this invaluable activity as much as we can. If you would like to share your stories of stroke support please contact Sarah Belson.
What has inspired you to be involved in stroke support?
Krisztina (SSO President): It was 17 years ago when my husband had a stroke. So in my case there was a personal involvement when seven years ago I accepted the request to be the leader of the Hungarian Stroke Support Organisation. Besides this personal involvement I had several personal contacts with Hungarian neurologists and rehabilitation specialists.
Eszter (SSO volunteer): It was my very first day at the hospital as a physiotherapy student, when I decided that I wanted to work with stroke patients in the future. In the summer I volunteered in a hospital, where my first day I was sent to the stroke rehabilitation department. To be honest, that time I knew so little about neurology and more precisely stroke, but of course I realized immediately that this is a really serious condition which has a tremendous impact not only on the stroke patient’s life but on their families and friends as well.
Frankly, I was concerned at first about how I would be able to help them and what should I say to encourage them. How would I give them strength not to give up and continue doing so much work for their recovery? Despite the fact that I was supposed to be the person who helped them, they were the ones who taught me a lot!
I have never seen that willpower, that motivation and strength in how these patients carried on with their lives and did their best in the rehabilitation process. Since then I am amazed by stroke patients and I respect them.
How did the project come about?
Krisztina: My husband was 52 years old when he had an ischaemic stroke with complete unilateral obstruction, resulting in hemiplegia and aphasia. We went through the acute phase, early and then late rehabilitation phase, struggling together with all of the condition’s consequences from loosing his job to psychological effects.
I was also young – at the end of my 40s and since then I have been actively involved in his rehabilitation, and can provide useful information, advice and answers to questions from patients suffering from the same condition. That’s why I was elected to be the leader of the National Stroke League of Hungary.
What does stroke support look like in your country?
Each year approximately 40-45 000 people have a stroke in Hungary. This number shows a slightly decreasing tendency, and also the rehabilitation outcomes are more positive. In the last 15 years the number of prevention campaigns has increased, which is one of the goals of the League. Also we are seeing the benefits of the growing availability of thrombolysis.
What have been the highs so far for your project?
The League is a founding member of the National Patient Forum (Nemzeti Betegfórum – NBF), a civil advocacy forum in Hungary. We have secured an individual, autonomous section in the Forum for cerebrovascular diseases. Besides being one of the founding members of the NBF, the League also took part in the formation of the Alliance of Patients Organizations in Hungary (BEMOSZ).
What have been some of the outcomes of the project?
We have built relationships with two well-known Hungarian rehabilitation institutes. In one of the institutes we were successful in ensuring that two of our members could have access to the expensive muscle relaxant botox therapy for free.
We play a role in expanding stroke patients’ access to innovative medicines, since we participate in the ministerial discussions concerning new stroke prevention and rehabilitation medicines.
What has been the feedback from stroke survivors to the project?
The League provides an individual consulting service, giving useful information to stroke patients and their families with reference to rehabilitation, legal questions and accessibility options to electrical devices. It means a great help to families, who face stroke as a sudden event in their lives. Unfortunately financial resources of civil patients associations in Hungary are very scarce. We do not get any governmental support and tender opportunities are complicated and almost inaccessible. Therefore mainly have human resources through volunteers.
What has been response from others?
The League often participates in media and we are frequently invited to national campaigns and training programmes organised by innovative pharmaceutical companies. The European Patients’ Forum has elected us among nine patient associations to a Capacity Building Project. We take part in the World Stroke Day event in Hungary with presentations and brochures and also in screening programmes, organised by local governments. Moreover, we maintain excellent relationships with several Hungarian patient associations, frequently meeting each other and exchanging information and experiences.
Posted here by Sarah Belson