London Ataxia Centre

This is not a moan, because I still really enjoy my check-up, but I am interested to know if it happens to other people?
The London Ataxia Centre is excellent and I have been going for about 5 years now. Today was my annual visit. We have to travel for at least 3 hours to get there, and normally have the first appointment at 1pm. Today we did not get to see the doctor until 2.30. Last year (2011) we had two and a half hours' wait before we were seen. It is always at least an hour wait. By the time you get home it is a very long and uncomfortable day.
Do other people have such long waits before seeing the doctor at Ataxia Centres?
I 100% understand that they need you there and the doctors are incredibly busy and trying to see as many patients as possible but is there not some way of working out the timings to be a little more realistic, so you do not have such a boring and frustrating start to your appointment.

I go to the Ataxia Clinic in Oxford and have the same problem. I have to travel about 50 miles. The clinic starts late in the day there and does not seem to take into account that we suffer from fatigue as part of our condition. I am glad that you have raised this topic because at times I am tempted to cancel my appointment if I am having a bad day. It takes several days for me to recover afterwards.

Out of curiosity, does anybody see a neurologist at their local hospital as well as attending the ataxia clinic.

I feel almost guilty to relate that my average waiting time to see the neurologist is around thirty minutes. My appointments however are not at a dedicated ataxia centre but at the University Hospital Cardiff. I'm not aware of a specific ataxia centre here in Wales but the local consultants seem to have an overall understanding of the condition, inasmuch as anyone can.

Does one miss out by not having access to an ataxia centre?

Hi,
In India I see my doctor at night and the earliest appointment is 9pm. If you are lucky the doctor is on time. Invariably he is delayed and there is a long waiting. I get so exhausted by the time I reach home. To catch sleep is another song and a dance.

I was diagnosed with idiopathic cerebellar ataxia in sept. 2008 in London. I Was in hospital with pneumonia ad a cardiac arrest in April…a neurologist saw me and said my condition must be msa…I am confused… What can I do…my main symptoms are, loss of balance so I can’t walk,can’t write, slurred speech…can anyone help?..joseph

sorry to hear that Joseph - Are you a member of Ataxia UK http://www.ataxia.org.uk/

I have just been to their Annual conference and there were many people in your situation. It was good to be amongst likje sufferers and to learn of the hope for the future.

I'm glad you have found this website as you will find friends. You are not alone - stay strong.

Are you getting physio? Your first port of call would be GP and ask for assessment for living at home.

Take care, Patsy

CA/59/Colchester UK

I know it must be very frustrating for you to have such a long wait but at least you have someone who you can see

I have SCA20 (hereditry) and I only see my neurologist at his clinic in our local general hospital. I dont know of any Ataxia Centre in Scotland.

I was diagnosed 5years ago and when I saw him last time (last year) he said that since there was no cure and as he could only treat side effects he was "signing me of" and if I ever wanted to see him again to go through my local GP

That's very true Joan. However, if you contact Ataxia UK helpline, they will send you literature for your consultant outlining your right to see a consultant at least every two years.

If you are not monitored, how will you know when new treatments are discovered.

Ataxia Centres do like as many of us as possible to be referred to them in order for them to have as large a database as possible to obtain meaningful statistics. That's the only reason I go there. I would prefer a neurologist at my local hospital.

Patsy

Thank you for the replies.
Neurologists do sound like they are all bad time keepers! You would think that they of all people would realise it is very uncomfortable waiting. I think it might help if they could at least give you an idea how long it might be so you could stretch your legs and have a drink and bite to eat. I always take food and drink, but get very hungry.
Colin we hate you and Cardiff, you lucky thing!
I think Patsy's recommendations are very good. Joan, I would be very tempted to go back to your GP and explain and try to get referred to a different neurologist.

I have been asking on the other forums, if you are interested to see, these links should work

http://ataxia-uk.healthunlocked.com/blogs/533147/London-Ataxia-Centre?ref=home
http://www.ataxia.org.uk/forum/index.php?tid=6392
I had thought about transferring to Oxford, but that has mixed reviews.
Fingers crossed things might improve.
Thank you XX

I travel from West Wales, to attend the Sheffield Ataxia Centre.

They are aware of the very long journey and make appiontments convienient for my travel.
All attendees appiontments are dealt with in a quick manner , any long "waits" are avoided or notified to the patient.
plus the canteen`s serve very good food.

it is worth the trip to know that my condition is monitored as it progresses.
Care co-ordination is always considered.

also this message thread http://www.livingwithataxia.org/forum/topics/does-a-neurologist-add-value-for-those-with-ataxia