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
