London Ataxia Centre

[Litty]

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.

[tedjohnson]

I think you will find this happens in most hospitals and it is most frustrating

My recent visit to outpatients I saw the Consultant one&half hours late. I found that

there were several of us all had the same time appointment I once had a private

appointment and guess what----I was seen on time!!!

[klazien]

Like tedjohnson said, with appointments in hospitals always come long waits. It seems to me that once they know you're there, it is first come, first served. We live 4 hours away from the London Ataxia centre and always count on a whole day for those visits. It is annoying that a referal given by anyone there can never be in London because we live to far away. So they said they would send the information to my GP here, That letter never came.

[Dustycat14]

Hi,my hubby had similar experience.we live in cornwall,left at about 5am on train,3upset children left with friend who had slept over,got2London in time for lunch,appt an hr late+we only just made it back2station in time to catch train home.arrived home 11pm,tired+stressed.test results asked for by various professionals numerous times.never materialised until i chased them up 2+half yrs later via ataxia nurse.However Dr.Giunti was lovely+so was everyone else we met.A shame they can't do a clinic nearer to us as too far to travel to again.

[Champ]

I left London Clinic because to travel there and spend time with the doctor was such a long day and incredibly tiring to travel back home again. I moved to Oxford clinic and what a difference. The clinic, doctors and ataxia nurse are fantastic!

[Wyndham]

I'm sorry to hear about the bad experience - especially as I am due to have my first visit there is a few weeks time!

There really is no excuse for not trying to schedule things better.

[Litty]

Thank you for the replies. You have had some very difficult visits. Neurologists do sound like they are all bad time keepers, unless you go private!

You would think that they of all people would realise just how uncomfortable it is for us to wait. 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.

I am very lucky now and my husband drives, because we had so many bad experiences with missing trains.

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

livingwithataxia.org/forum/...

ataxia.org.uk/forum/index.p...

I had thought about transferring to Oxford, but that has mixed reviews.

Really looking forward to hearing how Wyndham's visit goes! Good luck!

Fingers crossed things might improve.

Thank you again, it has been very interesting : )

[Hidden]

Yes me and my child moan, do you know why I'm glad to know its just not me.

[Hidden]

I always thought the moaning was apart of a seizure.