Ataxia Centres

[Litty]

I have SCA1 and have been attending the London Ataxia Centre for many years. When we are there we make an appointment for the following year. I have just received a letter cancelling my 6th August appointment at 1pm ( we have explained many times we like an early appointment to help with the London traffic). They have offered a new appointment in March at 4pm. This seems to be an awfully long time away and 4pm very late in the day.

I realise that we are very lucky to have these Centres and the doctors are incredibly busy people so I do not like moaning but it would be interesting to know other folk’s experiences. I live nearer to Oxford so I am looking into the possibility of transferring. Does anyone attend Oxford please? Many thanks : )

[Tiggywinkles]

I have gone to the John Radcliffe Hospital for the Ataxia clinic for the last 2 years and on both occasions my appointment time or day has been changed. My one for this year has already been changed to a different day and it isn't until November so it may be changed again. I live in North Devon so these changes are even worse for me as I have to arrange to stay somewhere overnight each time due to the distance. So, on that, I cannot say that it would be any better at Oxford rather than London.

[Litty in reply to Tiggywinkles]

Oh that is really interesting to know and very frustrating for you! You poor thing. Thank you for the reply : )

[sheild in reply to Tiggywinkles]

Be aware that John Radcliffe are having problems with their appointment system. We attended recently for me to see Prof Poulton who is not under Ataxia, but while we queued to book in at the Neuroscience dept we overheard the exasperated dialogue between staff. Patients were attending with appointment letters in their hands only to be told that they had been cancelled.

This was not an uncommon problem and the staff were lamenting the fact that the computer system was randomly cancelling appointments 'again'.

We had changed an appointment, and it was complicated for us to re-book which we did through the PA (Prof Poulton does not have any official clinic space), but when outr turn came there was no record of our appointment at all.

The staff were short on the ground as someone was either off or recently left, so the remaining staff were up against it.

That said we had a good experience in the end, had to wait about an hour beyond the agreed time, but got the answers to most of our questions.

I would suggest making contact with the consultant's secretary in the event that you do receive a cancelled letter, just to confirm that it was cancelled by staff and not a computer gliche.

There is a lot of pressure in the system and people have long waits becoming longer, I could re-tell my long long story, but if you make contact and explain again the difficulty you have getting to Oxford they might be able to accommodate.

.

[Hidden]

This has happened exactly the same to me at London but it has been easily resolved by speaking to the consultants secretary personally rather than the appointments dept. which takes little account of personal needs. On two occasions I have had appointment brought forward by some months.

Good luck!

Gloria

[cocoa]

I have been to Oxford Ataxia centre for some years and have some distance to travel, so can relate to the problem of having an appointment late in the day.

On more than one occasion my appointment has been changed, probably because they book so far ahead. I cannot fault Oxford and the caring attitude and for me it is a better choice than travelling into London, which I did when I was getting my diagnosis.

The hospital is easy to find, disabled parking is also good.

I hope you manage to sort things out to suit your needs.

[Marygate]

I go Ito to the London ataxia centre and have always found them helpful with appointments

Last November my appontment was cancelled but I had a call from Dr Guinti (consultant) explaining she has some issues to attend to. I thought this was good of her as she must be busy.

[tedjohnson]

I also go to Oxford and nearly all my appointments have been altered for some reason or other. However this doesn't cause much problem and everyone there is both very kind and helpfull. Good luck to everyone. Tedjohnson

[steve-17]

I am surprised there are Ataxia Clinics. I was diagnosed with Ataxia 4 years ago but have never been referred to a clinic or even told there was such a thing.

My local hospital is at Scarborough .

Steve-17

[tobytots in reply to steve-17]

hi there is a regional one in newcastle

[tobytots in reply to tobytots]

sorry that was for steve-17

[Razzy in reply to steve-17]

Steve I would talk to your doctor and ask to be reffered to the Ataxia Unit at Sheffield, I see a DR Hadjivasiliou at the Ataxia Clinic so I know there is such a thing for you to attend

[steve-17 in reply to Razzy]

Thank you, I will consider

[steve-17]

Thank you tourists...that is helpful

[steve-17 in reply to steve-17]

Thank you ..... that is helpful

[Litty]

Thank you all for your great replies it is really good to know.

I have seen Dr Giunti in London for many years. She is lovely but twice now my appointments have been cancelled and rebooked months ahead!

I am not good at being understood on the phone so Ian spoke to her secretary and got the new appointment in September (much better).

Thank you all again for all your tips : )

[Wyndham]

Very disappointing to hear.

It seems that even at the Ataxia Clinic we are just numbers rather than real people...