Stroke support organisations (SSO) are usually voluntary sector (non-governmental) organisations providing practical, emotional and advocacy support for stroke survivors and their families and, often, promoting stroke prevention awareness and action. Their scope sometimes includes other conditions such as other forms of acquired brain injury or cardiovascular disease. Most EU/SAFE member states have a regional or national level SSO (in the Faroe Islands, there is a disabled people’s organisation with an interest in stroke). The exceptions, as far as we are aware from our questionnaire and literature searches, are Lithuania, Malta, Romania and Slovakia.
Stroke survivors and their families can benefit from attending peer support groups, in terms of improvements to their sense of wellbeing, social isolation and practical skills. Some stroke support voluntary organisations also offer opportunities for stroke survivors to continue with low intensity rehabilitation, e.g. exercise groups or communication groups. Examples from SAFE member countries include the Finland Brain Association’s reablement training for patients and families; and the Neeman Association rehabilitation clubs in Israel which support patients to maintain rehabilitation gains.
“…what I see from my organisation is that people are very lonely after they have lost these abilities [physical functions]. And maybe worse for those who lose the ability to speak, they get very lonely; they often get very depressed… The families are very, very tired. I often speak to the relatives, to the families, because they don’t know what to do”
(Volunteer at support organisation for people with disabilities including as a result of stroke, Faroe Islands
“Eventually I managed to get into a [peer support group]. Even walking through the door, in the end it took my sons to actually physically walk me through the door because I couldn’t do it myself, I just couldn’t face it. I didn’t know why. And then when I got in there it was suddenly relief. They are my stroke family and that is what we now call – all of us, it is our stroke family.”
(Male stroke survivor, UK)