Can anyone recommend a more local to me (GU47 postcode) specialist or even a GP that has a small understanding and demonstrates empathy toward ataxia patients. Totally frustrated and angered by my GPS complete lack of interest in a “rare condition” and the effects it has on me.
It feels like having a treatable illness that allows them to tick all the boxes and meet targets is more important!
Even signposting to a different more interested doctor would be a more positive outcome at my surgery.
Why is it so hard to talk to someone who cares??????
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penelope2
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Hey, I'm GU2 postcode, and I'm not aware of anything local. Only the London Ataxia Centre. I believe some patients attend a specialist clinic in Southampton too.
I too, was frustrated and angered at the response I got from my GP when I offered to share Ataxia UK's Medial Guidelines - pretty much got told the practice wouldn't have time to read it, nor would anyone remember to refer to it 😠
In my area, a few years ago, some people who’d attended the local ataxia centre received letters saying they’d no longer be given Neurologist review appointments as a matter of course, instead they were advised to see their GP unless a specific problem arose. This included people diagnosed with such as SCA6, and Idiopathic. It’s good advice to pass Ataxia Medical Guidelines on to GPs, to be kept on file for reference should the need arise.
On the subject of the Ataxia UK Medical Guidelines, I am walking over to one of my GP practice's surgeries in support of International Ataxia Awareness Day (more info at ataxia.org.uk/iaad2021/). I'm hoping the practice's admin team will take up the opportunity to retain it for reference, as opposed to my named GP (same practice) that I spoke to a few months ago. I appreciate GPs are "general practitioners" and have an awful lot to triage to a huge selection of specialists, but such material could result in a much quicker referral to a suitable specialist.
Hi edfosho. I like your thinking re taking the ataxia Guidelines to the GPS. Its the least we can do for ourselves and other ataxians. If it just makes one gp think twice then its worth it. I'll be doing the same.
Hi wobblybee. We all know or can guess what happens to these guidelines.It won't be on an eye level shelf to hand for reference as and when needed!!!!!!!
Well I am waiting for a first appointment later in the year at the London clinic. But to be honest as I think I have autoimmune ataxia would rather be going to Sheffield.As these specialist appointments are such a long time in-between there should be professionals with an interest or at least an empathetic approach that is more accessible, as I think we deserve that at least!
My experience of local doctors and neurologists are not good. They need to up their game.
I was seen at a local ataxia Centre until it closed, and had no complaints about treatment, after that I was referred to Queen Square in London for testing, and a further referral..Currently, I’m referred back to a local Neurologist, he actually specialises in Mitochondria.. I’ve had 1 face to face appointment with him, and was pleasantly surprised by the follow on letter. He outlined all the testing I’d had done to find the cause of my ataxia, something I’d often wondered about but had never been told..
Sounds good especially explaining about the testing.I'm interested to know, did the UCLH tell you about the local neurologist and refer you to him?
And are you still under the London team too?
Will understand if you don't want to say.
It's quite a trip up to the UCLH for me although I have done this once. Had to leave home at 7.30 and the dsy out took nearly 12 hours! Was completely washed out for 2 days after!!!!
I am still waiting for the results of the tests, it's over 2 months now.
Would really like like to find a more local neurologist. The two I have seen near me, one was useless to the point of negligence and the other one was completely out of his depth but he did refer me to London.
🙂My visits to London always involved an overnight stay, because I live almost 300 miles away.After testing in London, I was given the choice of keeping appointments there, or changing back to Newcastle. I was already aware of the Newcastle Neurologist, his team had been taking on patients when our Ataxia Centre closed.
I did once wait more than 6mths for results of a test at London, I’d had high hopes it would lead to an answer, but it was negative. Unfortunately it’s likely that Covid has delayed current testing.
Currently there’s isn’t anybody in my area who specialises in Ataxia, but because I’ve already had testing, I’m happy to be seen locally by aNeurologist who specialises in Mitochondria.
It’s a frustrating, stressful business being passed around Neurologists and other Specialists, hoping that one of them will solve the problem..
I hope your appointment in London will be more productive 🙂
I live in Northumberland and had to go to London twice a year one to see my Neurologist and one to see a doctor from the Genetics team as my SCA 6 is inherited. Initially both appointments were months apart but this year I managed to get them within two days of each other both in September which would mean a two night say in London which is not exactly the best place to be if your disabled.
I have now changed both to phone appointments I appreciate this is not the best way to do it but my cunning plan is to go to London once every two or three years.
The way I see it not much or nothing can be done to help so why bother with the haste and expense for very little or no benefit.
I think the Neurologists learn more from us as we do from them.
I am lucky enough to have Dystonia as well so attend a clinic in Newcastle every 3 months.
I’ve never see a GP with anything to do with my SCA 6 or Dystonia as I might as well see a vet, bricklayer or a bus driver for what it’s worth.
Yes GPS have their limitations and I would not expect them to be able to tell me anything but a bit of empathy wouldn't go amiss.We really do have a lot to put up with at times!!
Doctors hardly ever see Ataxia patients. Keep changing doctors until you find one that actually cares about you, rather than a 10 min in and out. They will then learn about Ataxia.I have "trained" my GP about ataxia.
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