Hi all, firstly, I was diagnosed by Prof H, in Sheffield, back in 2014 I have SCA7. My GP when I lived near Harrogate (North Yorks) seemed keen enough, and I got advice mainly from actual Ataxia sufferers here. I moved down to near Sleaford in Lincolnshire, a year ago, and the GP I have does not really seem to know anything, I know thats an unfair thing to say, but when I had to ask MYSELF for a referral to a Neurologist a few months ago, and getting refereed to the main Neurological clinic at Lincoln Hospital, sometime (I have not got an app yet).... it has made me wonder if its worth changing practices, and asking questions of the new practice before hand.
My health at the moment is ok, ish, and have no need to see a gp, but have been a tad anxious of late, as to what would happen IF I needed medical attention for the Ataxia
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peterallison
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I do understand what you are saying and one of the reasons that I am finding it hard to make that move, but on a positive note all your records should have come with you and as they are all computerised now it is a simple task. You just have to get more pushy! I live in a very bad area for our condition and have fought really hard to not be put on some back burner. Still fighting for what it is worth! The point is that for now you may have to take control and just make sure when and if you need it you get the help that you need.
Hi Peter Allison. I hope this info helps. I was only diagnosed early last year. I knew nothing so I joined Ataxia UK and here. Now I am under Sheffield. My GPS new nothing so I arranged a whole pk of info which you can get sent from ataxia UK to my GPS and myself. I was very pushy I was referred to Sheffield from being discharged from Salford. I now have my GPS really falling over me. Have notes on the system, which says must have gp appointment on the same day. Have had blood tests done, phonecalls from GPS. Social workers, occ therapist's and as my husband is my carer we can have support if required.
You have to demand nicely be firm polite
and determined. Sadly with our NHS its those who shut out loudest get things done. Thanks to this forum I have gained insights on this condition and thank everyone.
Note I was not like this at 69 I am learning. Good luck.
the problem I find is that our surgery (like most) has a few GP's, and altho my info is right there in front of them, one GP who I always get to see, is , or seems to me (compared to my previous, 2017 GP's) very lackadaisical about my specific condition, and I have sent them the GP's info pack on Ataxia, which I doubt was read, even tho it was handed to the reception by hand personaly.
The problem is the surgery has lots of people, and the app system is not what it was, having to get thru the first hurdle... "The Dragon" reception staff, who think they themselves are doctors
Have you checked whether your referral has been made?
I remember a similar thing happened to me. In the end I asked for my consultant at John Radcliffe Oxford to refer me to my local neurologist, although I am still on their records as well.
I was referred to the local hospital in Grantham, where I saw a neurologist there, he has given me a referral to see a colleague at Lincoln hospital, but as yet, not heard back, things take time
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