In 2019, Ataxia UK won a grant for three years of support from the Lottery Community Fund for a programme to study isolation and loneliness in the ataxia community and develop volunteering in England.

One of the key elements of our Strategic Plan is to enable people to feel supported, and “InControl“ of their circumstances, despite being affected by ataxia. Over the next three years, we will seek to understand the extent of the challenges of isolation, loneliness and mental wellbeing in the ataxia community and develop volunteering opportunities. Studies show that loneliness makes people more prone to depression and other mental health issues. The ‘InControl’ project will address this by developing services, including volunteering, to decrease loneliness, isolation and exclusion, and thus improve mental wellbeing.

The team running In Control consists of James Atkins, InControl Programme Manager, and Shana de Figueiredo Scholtz, InControl Programme Community Officer. James and Shana are interacting with the ataxia community; support Branches and Support Groups and will develop our volunteering opportunities, including our 16-30’s Group and Ambassadors Programme. To oversee the project, we have established a steering group consisting of a diverse group of people affected, or engaged with Ataxia UK in a variety of ways.

In the coming months we will carry out an extensive survey of Friends using the Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS) to determine the levels of loneliness and isolation, taking into account the different types of ataxia and milestones as the condition worsens. In addition, we will conduct a number of semi-structured interviews with various segments of the community to understand the challenges to mental wellbeing and potential remedies in more depth. We are delighted that the Lottery Community Fund have given us the opportunity to both carry out the research and develop our services in support of the ataxia community.