The ataxias are a set of rare, life-limiting, progressively destructive conditions affecting 12,000 people across the UK. Currently there are no cures for the ataxias and it is often difficult and stressful for many people to get the correct diagnosis and treatment for their condition.
Registered Charity in England and Wales (1102391)
Travelling to London disrupts my already busy schedule; managing my ataxia, going to other healthcare appointments more locally, weekly physio appointments, as well as attending university. A virtual service would make my life easier, I could speak to a specialist without travelling to London.
A virtual ataxia service would make such a huge difference. Being able to access appointments quicker when I have a new symptom would lessen my anxiety. I would also feel listened to and hopefully my local GP could now start to understand my condition better.
Several members of our St. Austell (Cornwall) Support Group often have to make what can be a long, costly journey to the London Ataxia Centre to discuss their ataxia treatment and diagnosis. A virtual ataxia clinic would mean the world to them and their families.
Travelling to the Sheffield Ataxia Centre isn't an option for our family. Travelling there would be very expensive, plus a night's stay in the local area would add more to the cost. To have a virtual ataxia service would mean absolutely everything to us.
At present there are only two adult ataxia centres in the UK, with two children's centres currently in development thanks to the success of last year's Big Give campaign. With over 12,00 adults and children facing the prospect of progressively losing the ability to walk, and potentially lose their speech, sight and hearing, it often takes many years to get the correct diagnosis and treatment simply because patients aren't able to access a specialist ataxia neurologist.
We need to raise funds to set up additional NHS accredited ataxia centres and improve access to extended specialist services. These centres will provide diagnostic and ongoing care for adults and children living with ataxia. Our aim is to further extend services at all existing and new centres; increasing the provision of Multi-Disciplinary Community Teams to provide better coordination of treatment, and virtual clinics providing long distance treatment and care, reducing the need to travel.
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