UK Ataxia Centres

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 : )

It's appalling Lit... can you not get on the phone and assert yourself? I know someone who does but havent tried myself.

A member of my support group told me about Dr de Sillva who has ATAXIA CLINIC in local hospitals so I googled his name to enquire. He answered my email personally and advised me to obtain letter from GP for referral to him.

I did this and now Dr de Silva see's me at a local clinic [Braintree, Essex].

I am so pleased I dont need to travel to London anymore... in fact I had decided, at turned 70-years, I really couldn't see the point.

Dr de Silva has also referred me to local neuro physio [at hospital] who monitors my progress. I think they need to sort themselves at the London Ataxia Clinic as it really isnt fair to expect their patients to be treated so inconsiderately.

Just saying.. hope this helps. x

Thank you for the reply. Well done on finding Dr de Silva, he sounds lovely and I want to move near you! I am hopeless on the phone so Ian is going to get on the case. I just though I would find out my facts first. Unfortunately on the other forum I use the Oxford lot sound as bad! Ah well, thank you anyway X

How come they can treat patients in UK for ataxia but I cant get treatment in good old USA? It seems like I get no treatment because I dont have parkinsons or MS or whatever.-----It seems like I hit a barrier sometimes.

Sounds very stressful... and this will only add/make worse the condition

the very nature of these centre`s should know exactly how an ataxia patient "works" or NOT "work")

I have heard many differing stories about many centres and clinics both good and bad.

As well as the special centres, around the country many Ataxia Clinics are also available, alot of the time they may "Go under the radar" as they may be called something else - because of health board politics.

Note - the Oxford Centre is only an Ataxia Clinic (AUK accreditaton being reviewed)

Many consultant Neurologists have a knowledge or interest in Ataxia, and building a patient relationship, here is also beneficial.

There is an Ataxia Clinic in Cardiff, Wales , but as they all have an increasing patient list, it may be a "waiting game" or even a "Postcode" Lottery


Thank you all for your great replies it is really good to know. Sorry they do not have them in the USA.

I am not good at being understood on the phone so Ian spoke to Dr Giunti's secretary and got the new appointment in September (much better).
Thank you all again for all your tips : )