Specialist treatment and care for everyone affected by ataxia is at the heart of everything we do. We want to expand information to improve diagnosis across the UK, providing support to more areas of the UK. People with ataxia deserve access to treatments as soon as they come available.
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Specialist treatment & care is typically localised around the 3 areas where Ataxia UK has developed Ataxia Centres. Outside these, information on diagnosis & management is limited. Mobility can present a problem for people affected by ataxia. To address this, we piloted a Specialist Nurse service in the Southwest to increase the reach of specialist care. Issues arise when treatments become licensed but aren’t available on the NHS. Treatments provided need to be kept up to date with the research.
We aim to solve this problem by establishing Access to Specialist Treatment & Care as one of the Strategic Pillars of our work. We want to build a network of policy makers & politicians who understand the ataxias and who are prepared to advocate for AUK. Using this period to evaluate existing treatment & care delivery tools in comparison with each other and wider care services, to understand how to develop future ataxia care - we hope to make specialist treatment & care available more widely.