Sarah is the International Development Manager at the World Stroke Organization; leading, developing and implementing a programme of capacity building activities for new and emerging patient stroke support organizations (SSOs) around the world.
What brought you to Stroke Support Organisation Faculty Tool?
I have been working with local organisations on development projects internationally for a number of years. I have spent time supporting organisations to develop their capacity and skills to deliver quality services and engage in advocacy.
What is your role?
I am the International Development Manager with the World Stroke Organization and Stroke Association UK and we work in partnership with the Stroke Alliance for Europe. My role is to lead the capacity building programme for patient stroke support organisations around the world. This includes supporting organisations to set up, to develop projects and to engage in advocacy.
What makes you excited to be part of this project?
I have witnessed the changes that empowered local organisations can make to the policies and practices that affect people’s lives, most recently this has been patient stroke support organisations from across the world. This project is exciting as it is an opportunity to break new ground in the resources available to enable stroke support organisations to develop their skills and contribute to changes that can improve the lives of people affected by stroke.
How will your background in community development help you in this project?
The community development work that I engage in is based on partnership, solidarity and respect. I seek to understand the context in which stroke support organisations are working and to develop solutions together. As such, in writing content for this online resource, we are encouraging the engagement of members of SAFE to help us ensure that the content is as accessible and relevant as possible. We do not want a resource to be developed in isolation from the concerns and priorities of those who will be using it.
In your opinion why is the patient voice so important?
Those most affected by stroke need to be at the heart of solutions that address the gaps in stroke policy and practice. Again solutions cannot be driven without considering the experiences, insights and views of the people with lived experience. Time and again we see initiatives fail because the expertise of patients was not considered.
How do you see this project and e-learning tool helping SSOs?
I often hear from SSOs that they want tools and resources to help them grow and develop. We have a great opportunity to create a resource specifically for SSOs that responds to their expressed needs, areas of interest and appropriate ways to access information and to learn and take action.
Given the diverse geographical spread of SAFE’s members how to you take into account their unique experiences and context?
SAFE’s diverse membership is a hugely rich resource for the development of this project. We see it as a positive that we can draw on and share such a range of experiences from different contexts, and guidance and insights from different SSOs. There is an opportunity here to make this resource dynamic, by considering these different contexts whilst also including guidance that is transferable – for example whatever context you are in you need to find collaborators for your advocacy work, and whatever context you are in you need to be specific about what your priority activities are and therefore what funds you will need.
What long term issues and benefits do you envisage?
I think this is just the beginning; a long term issue is how we will continue to encourage people to use the resource and how we expand content and reach. I envisage this resource as further strengthening the European stroke patient network and in time the global stroke patient network.