Dear community,
I wanted to take the opportunity to share some of the work that we’ve been doing to develop the Online Community in response to feedback. Over the coming few weeks I will post a series of updates.
Today I’d like to focus on the purpose of the Online Community.
This is a space for you to give and receive peer support to help with your stroke recovery. We know that there’s huge value in being able to share your experiences of stroke and there’s no question that this support is provided by you, the community.
People who are new to the Online Community may be worried about joining a public space. The Online Community should be somewhere that everyone feels welcome, able to ask questions, share recovery tips, and learn from each other.
Sometimes people want to discuss how the stroke system can be improved or what stroke research they think should take place. Or even what the Stroke Association should do differently. We understand that these are important questions and people have strong feelings. However, within the community, we do need to keep the focus on peer support and ask that the Online Community is not used for these types of discussions.
The Stroke Association does have teams dedicated to influencing policy and investing in research. They run their own processes for listening to the concerns of people affected by stroke and prioritising their resources. They are currently not active on the Online Community. And learning suggests that the community may not be the right space for engagement about these topics as it takes the focus away from peer support. We will keep this under review.
Everyone’s experiences are important, and we are asking you to give your feedback about the Online Community so that we can better understand this. Next week I will post an update to explain how we will collect and use your feedback to help us to shape the Online Community to improve your experience.
In the meantime, please do use the Online Community in the way it is intended - by continuing to offer invaluable support to each other.
Thanks for taking the time to read.
Nicola