The 2022 World Stroke Congress in Singapore was an important opportunity to ensure that we heard from people in the region with lived experience of stroke as well as from stroke support organisations and their community programmes.
Members of the Singapore National Stroke Association (SNSA), Terence Ang and Joanne Toh Sok Ling described their experiences of having a stroke and shared their thoughts on improving stroke care as part of the main congress programme.
Terence was head of Digital Marketing and e-Commerce with Singapore's largest electronic company before his stroke. He is currently on a mission to make rehabilitation more accessible. Having already written a book, ‘A Cry in the Dark’, Terence is now working on a second book with fellow stroke survivors, “Emerging from the Dark”, which features stroke survivors with their realistic yet positive personal stories. They are all in various stages of recovery, bruised but not beaten and have emerged from the depths of despair. The collection of short stories is accompanied by illustrations to shed light on post-stroke life in an interesting, unique and yet powerful way. Terence hopes it can make a difference in someone's life by sharing different journeys and providing a blemished, yet positive, outlook on post-stroke life. No one needs to be alone in their struggles as they navigate everyday life after experiencing a stroke. Terence spoke in the congress session ‘The breadth of nursing in stroke care’ about his experience of nurses during his treatment. Take a look at Terence’s video here
Joanne Toh Sok Ling had a haemorrhagic stroke less than a year ago. Joanne spoke in the congress session ‘Measuring Patient Experience and Outcomes to Influence Service Delivery’ and shared her experience of recovery and outcomes. Joanne hopes to contribute to increased understanding of stroke survivors’ experience in order to help more survivors. Joanne has also written a book about her experiences in the hope of encouraging and bringing more hope to people that have had a stroke. You can hear Joanne’s reflections on the Congress here
National Stroke Association of Malaysia (NASAM) board member and stroke champion, Edmond Lim, shared how he has contributed and co-designed an online data management platform in the session ‘Using co-design in the development of stroke services’. Edmond, an IT Specialist, had his stroke 25 years ago at the age of 33. The key messages from Edmond’s experience are that he was integrated into the NASAM team and this enabled an environment that was conducive to a co-design approach, and the team saw beyond the ‘stroke survivor’ label to his professional skills and experience. Watch Edmond’s talk here
NASAM Petaling Jaya member Bob Kee shared his journey and experience as a young stroke survivor in the congress session ‘Stroke in the Young’. Bob was an acupuncturist and traditional Chinese medicine practitioner in Kuala Lumpur when he had a stroke at 47 years old in May 2022. You can see Bob’s talk here
A number of physiotherapists from NASAM also attended the congress and helped with the running of the Stroke Exchange Forum. Kathiravan Tangaraju, Sundari Sivan and Ivan Tan shared their reflections on attending the congress here
WSO extends its thanks to Terence, Joanne, Edmond, Robert and all those involved from Singapore National Stroke Association and NASAM. You added so much to the Congress and it was a privilege to hear your stories and learn about the work of SSOs in Malaysia and Singapore to drive improvements in stroke awareness and care.
Singapore National Stroke Association – https://snsa.org.sg/
National Stroke Association of Malaysia - https://www.nasam.org/
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