Gemma is an Ataxia UK Trustee and has episodic ataxia. Gemma tells us how a virtual ataxia service would make the biggest difference!
I feel that local neurologists don’t know what ataxia is, and if they claim to, it’s only very basic knowledge. I have spent many times in the past explaining what ataxia is to neurologists, which has left me feeling deflated. That level of care really isn’t adequate.
I attend the Sheffield Ataxia Centre and although it’s not the longest journey, I worry about falling over while trying to get on or off the train. On more than one occasion I have been knocked over while travelling through Sheffield station as it gets incredibly busy and it’s a great cause for concern ahead of travelling. Finding the money for travelling is also a worry, but thankfully I get money reimbursed due to being on certain benefits. However, this isn’t the case for everyone.
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 neurologist/GP would start to understand my condition a bit better. I certainly feel that my healthcare would be better provided for if I was able to attend a virtual service.
I’ve been told by a GP before that I shouldn’t be seeing them as my symptoms are all because of the ataxia, yet they didn’t know what ataxia was, so couldn’t identify the symptoms. When I saw my neurologist regarding the new symptom, it turned out it had nothing to do with ataxia at all. It all comes down to seeing someone who knows the condition and the patient history. It would mean the world to me to be able attend a virtual clinic.
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