Christina Sperling, Director, Community Programs & After Stroke at March of Dimes Canada and Beth Scrimshaw, Group Networks Manager at the Stroke Association, recently shared their thoughts about why it has been so valuable to connect, why stroke support groups are important to recovery and the benefits of a global SSO network.
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The World Stroke Organization has a growing network of stroke support organization (SSO) members located in all regions of the world. These organisations range in size and focus but are all united in driving improved outcomes for stroke, whether through awareness of risk factors and signs of stroke, influencing policy, investing in research or providing long-term support.
Members of this global SSO network have extensive experience and insights about involving people with lived experience, influencing policy makers and understanding the long term needs of stroke survivors and carers in different regions of the world. This experience is a hugely valuable and free! resource and SSOs are keen to listen and learn from each other, no matter what their current size or expertise.
Two members of the SSO network, March of Dimes Canada and Stroke Association UK, have been connecting over the past few years about service delivery, and most recently specifically about facilitating stroke support groups.
March of Dimes Canada is a leading national charity committed to championing equity, empowering ability, and creating real change. March of Dimes has been supporting people impacted by stroke since 2002 and informed by growing evidence about the needs of stroke survivors and their families, their activities have grown and in 2021 a new After Stroke program was created.
The Stroke Association is the UK’s biggest stroke charity, working across the UK. The organization provides specialist services including emotional and communication support, and produces health information based on accurate and up-to-date evidence. The Stroke Association also funds critical research to help improve treatment, care and rehabilitation and campaigns to make sure people affected by stroke get the very best care and support to rebuild their lives.
For March of Dimes Canada, the organisation has been exploring different models for peer support that will offer an enhanced experience for the groups across the country, while allowing the organisation the ability to focus on improving access to peer support for stroke survivors and caregivers. The organisation recently completed a current state review that aimed to determine the effectiveness of the relationship between March of Dimes and its’ peer support groups. The project also included the review, assessment, and analysis of other national and international charities, such as the Stroke Association UK, to determine best practices for peer support group structure and functionality.
For the Stroke Association, a new network model for stroke support groups was implemented a year ago. The Stroke Association’s Stroke Group Network is a community of stroke support groups across the UK. From structured group sessions to informal café meet-ups, it brings together all types of stroke support groups to make sure that people affected by stroke can support one another to rebuild their lives. Not only can the network help group leaders to share experiences, learning and ideas, it can also offer practical tools, resources and information to help them be a leading source of support for people affected by stroke. The network has enabled group leaders, volunteers, stroke survivors and their families to connect beyond their local regions. It has enhanced the referral process, so that stroke survivors can gain access to stroke support groups more easily.