Its what I said on the first visit to my new GP, as I have moved 100 miles south of Harrogate where I lived. It was in response to a question I asked, about getting a new Neurologist in the local hospital. As I had told him, I needed to see one, just to so he/she could keep a regular twice yearly eye on me, and to notice the progressive nature of my Hereditary Ataxia ( SPG7), and had mentioned there was NO cure for Ataxia in general, so he just said if there is no cure, why do you want to see a neurologist.... I reckon I should look into changing surgeries? On another note, I saw young Polish Doctor, to get my usual 6 month "fit note", and on talking, she was saying, she had not come across Ataxia before, and had not written a fit not for more than a month. Sorry, but the 2 P's I have seen up to now, do NOT instill any confidence in the practice. And I am NOT going to complain, as I have no actual proof of the chat I had between them.
And had my PIP ASSESSMENT at home, again, but thats whole new can of worms
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peterallison
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I just want to hear about the can of worms as the rest is the way it is,,,,,,,,,,,,,,,,,,,,,
Please complain as it is the only way that it does make a difference and I really do know that, There is no cure and we have to keep beating them over the head about that too.
I know enough if your current GP is really bad then you should change and actually do it soon because I do have a relationship with mine now and as he really doesn't have a clue about the condition if I do ask him for some help I do normally get it,
Is it possible that you could ask them to refer you to your local neurologist? This is what I did and I am now seeing a lovely neurologist at my local hospital.
After my "chat" with the GP, a few weeks ago. he did refer me, at my insistence, I had a letter saying the hospital would be in touch, as to the date, but a lot can happen between them giving me a date, and me finally attending, it could take months. I am slowly loosing any kind of respect and patience I had for"so called health professionals". Sad to say, with me now retired, with not much to do, but become the pain in the A***, and start to write to all and sundry, it may or may not help, but will make me feel better
I like your spunk! Keep it up! Sometimes you have to be the "Pain in the Ass" to get things started. It is NOT a personality trait. It takes fortitude. Keep going.
What a frustrating response from your GP about the necessity to see a neurologist. They have probably never seen someone with a progressive ataxia due to its rarity. I always try and think of positives, however tenuous, in an attempt to make myself feel better. Think of your interaction with the GP as an opportunity to educate them and you are helping them increase their knowledge-you are raising awareness!
I would advise taking the medical guidelines to your appointment, either the full guideline of the summary aimed at GPs. Both contain a section 'Reviews and follow-up' which advises patients with a progressive ataxia should be seen every 6-12 months and the reasons why.
I must admit, I have never seen these documents before. Where can I get a couple of copies from? As just printing them off, and handing over a load of home printed bits of paper, does not look professional. I just wish the "so called health pro" who came to do my PIP assessment yesterday, had seen these, or at least a summary, rather than just Google what Ataxia is, (yes, she admitted she did this). I just feel as if I have been left out in the cold, as far as any GP's specialists go, maybe its partly my fault, as am a stubborn person, and try and do things, and regret I did them the next day, because it made me so tired/drained
I agree as Peter said it is like a can of worms, I am not really good at really explaining what I went through but it was enough that I never wanted anyone else to ever go though it, all information is good information.
Thanks for sharing, I must have seen it (perhaps I couldn't read it at the time) it is useful to see the recommendations for around the home, most I have implemented but a couple of ideas I had not.
I too have no care at my local hospital, because I complained. I am now told I cannot have a neurologist and they even cancelled my neurosurgeon for my spinal problems, I am left in the gutter going around in circles. I will be fighting for my care and will never give up.
I know exactly how you feel and I would take you in if I could. The only saving grace I had through all of this that I owned my own house and no one could take that away. I lost myself though this and my pride and was made to feel so useless that I wanted to give up. It is beyond me still but we have to keep trying!
Good for you! It takes fortitude, resilience, etc. to keep fighting. We can use whatever energy we have to do this.
Some doctors or nurses can come off rude, they don't have the feeling of what its like to live with ataxia. If they had a chance to have it half are all of what they say that's rude wouldn't be said, I say keep your self well enough pain free and alive, there comments can't do more than what ataxia already does.
ok first thing first...The Polish doctor. I originate in Slovakia, where docs do not call it ataxia (an umbrella term), they'd rather idiotically call it atrophy and list all the symptoms SEPARATELY...like speech dysarthria (slurred speech). My doctor in England (seek the natives doctors), nothing wrong with Polish medics, bujt there is simple explanation...In central Europe, for many years anything ataxic was OFTEN mistaken to Parkinson...My paternal grandma was one of such patients....
Certainly get a new gp, who 1. understands what ataxia is, symptoms, difficulties 2. get referred to the local neurologist...we all know what it is and its progressive nature. You need a specialist...if anything crops up - you can be referred eg. speech therapy...supplement therapy, not primary as there is NOT AT THE MOMENT, BUT one needs checks up 2x a year...
Polish doc can be good, highly educated...but the language (his problem) NOT YOURS is lacking, otherwise he would know...
Just so I can be very clear here. I have NO problems with ANY GP, its just a basic not understanding of what the condition imposes on a person, in every day situations. And that goes for ALL so called health professionals, especially those employed by companies who carry out assessments (sorry, but they are a waste of space, personally speaking, experienced 4 assessments now, for things, not just PIP). I am just feeling so useless, as apart from writing to various people, there is naff all that can be done. Even Channel Fours "Last Leg" have commented a lot, of the total uselessness of the system
It seems to be our job to educate our medical practitioners!
Please send them the link to the National Ataxia Federation symposium stream on Facebook. Six hours of specialist neurologists, scientists and industry representatives discussing various treatments for ataxia, current treatment for the symptoms, and All the drugs in the testing pipelines.
The conference was called: Ataxia - a treatable condition!
We have spent nine years fighting for our son to be seen by somebody who knows something about this illness!
He was under Great Ormond Street and they didn’t have a clue and had no interest in finding anything out about how to help him!
And then we went privately...
A whole different ball game!
Unfortunately, it still seems that money talks.
Fight for the right to be treated first of all with respect and dignity second of all by somebody who has an interest in treating you. Look and change GPs until you find that one for you!
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Why I asked about uk physio sessions
Is seeing a Neurologist on a regular basis essential?
My family does not want to be tested for Ataxia
