There was significant stroke support organization (SSO) representation and content at the 2018 World Stroke Congress in Montreal, and for the first time the SSO main session was recorded and excerpts are now available on the World Stroke Academy.
There was a range of SSO activity throughout the World Stroke Congress. The Testimonial Exhibition and e book included 145 stories of people affected by stroke from 28 countries. During the Congress the posters were placed by the list of Congress participants, and many delegates commented that it was a reminder that people affected by stroke across the world are a fundamental part of the World Stroke Congress – ‘the reason we are here’.
The SSO main congress session opened with ‘The power of SSOs as change agents to improve stroke systems of care’, chaired by Heart and Stroke Canada. The first presentation is on the Canadian experience of the building blocks for stroke systems change. The presentation on Heart and Stroke’s indigenous health strategy highlights that bringing together different knowledge systems can generate innovation. The talk on driving systems change in a complex political environment, stresses the importance of keeping a focus on patient and caregivers’ needs and ensuring transparency.
The last talk in this session is by Sheila Farrell, a Canadian stroke survivor. Sheila emphasizes the gaps in long term stroke support for survivors, and the importance of listening to survivors’ experiences to understand the reality of life after stroke, and to help build a better roadmap for future stroke survivors. She calls for the loop to be closed between scientific research, the disciplines of the healthcare system, the community and the patient.
The next SSO session focuses on some of the less talked about effects of stroke. We hear about stroke specific end of life issues, including communication difficulties and the lack of discussion on end of life planning, as stroke is often a ‘bolt from the blue’. The relationships and intimacy talk highlights the fear and concern often felt by stroke survivors in relation to these issues, and the need for training to build the confidence of health care professionals in discussing relationships and sexuality. The third talk in this session looks at psychological changes as a result of stroke, and underlines the importance of sharing stroke survivor testimonials to highlight the psychological impact of stroke, to challenge stigma and to encourage stroke survivors to identify with others; building peer support. The conclusion of this session is that there is a crucial role for SSOs across all these issues: to advocate for better support, training and research; to identify and meet needs and gaps through their stroke support activities; and to develop resources.
Thank you to all the SSO speakers and to the congress delegates who engaged so positively with the important work that SSOs are doing across the world.
If you are a member of WSO you can access the SSO content here https://world-stroke-academy.org/wso/2018/montreal/261548