Recommended specialist centres

[Jenkinsaj]

Can anyone recommend which specialist centre to be referred am considering the one in Oxford or London? My husband is currently under a local neurologist who we have no faith it. Many thanks

[cocoa]

I attend the Oxford Clinic because that is nearest to me. The parking is easy and accessible.

Initially I went to London but do bear in mind travelling, parking and in my case overnight stays.

[Jenkinsaj in reply to cocoa]

Thank you Cocoa very helpful, is there much of a difference in knowledge and support for them 2 centres, I note that the one in London is a centre of excellence, is Oxford the same standard? Good luck with your illness. Many thanks.

[cocoa in reply to Jenkinsaj]

If you look at the Ataxia UK website you will find more details about the centres. I think Oxford only has one clinic a month and waiting could take some time. You could contact both clinics and enquire before making a decision.

I was insured when I went to London so can't comment on how long the wait would be. Sadly, no longer insured but it doesn't make any difference because you would still see the same people.

[ConantheLibrarian in reply to cocoa]

Dear Cocoa

Do you know if they offer help or advice in physiotherapy? I actually go to that same clinic every 2 years myself but they have never mentioned physiotherapy before and I've never asked about it.

[cocoa in reply to ConantheLibrarian]

I did enquire once, a few years back and at that time was told it was possible - things may have changed by now though.

I didn't follow it up because it is too far for me to go for a course of treatment.

[ConantheLibrarian in reply to cocoa]

Thanks. I might ask them when I see them next year although I'm also going to enquire about the London Ataxia clinic. I live in Bedfordshire and I wouldn't fancy making regular trips to London or Oxford, especially as I use a walking frame. I wonder if they can see you in person occasionally and then give you exercises to do at home.

[planetzed in reply to ConantheLibrarian]

Your gp should be able to refer you to a local neuro physio. I did this two years ago and had sessions to show me the exercises I could do at home. After I was discharged I was told I could self refer after say 6 months.

This was carried out in my local community hospital (Abingdon).

[ConantheLibrarian in reply to planetzed]

Thanks

[cymruralf]

Hi Jenkinsaj

I managed to get a referral to Dr Giuntis clinic in UCLH, Queens square, London in February this year and have just had a follow up at the same clinic. I can only say that I have received good service at this clinic which I am sure occurs at all these centres. My local neurologist agreed to this referral as they appear to be the experts in these conditions and have the ability to organise multi disciplinary teams for your future care. I travel from Hertfordshire to London so it is really a case of your own personal abilities in coping with the travel. Good luck and keep well.

Colin

[Jenkinsaj in reply to cymruralf]

Hi Cymruralf

Thank you so much, really useful. Good luck with your journey.

[Guyb in reply to cymruralf]

After 14 years of having no hop I've been to the centre royal halamshire Sheffield they are unbelievable compared to my local neurologist. Good look

[Jenkinsaj in reply to Guyb]

Thank you Guyb appreciate your help. Good luck to you too

[patriciagrant]

I have been attending the London Centre for years and in that time I have seen many different sorts of specialists, who are experts in their field. These include, physio, OT, psychiatry and general mental health, speech therapy, bladder clinics, eye clinic, amongst others. I find that the London Centre is extremely good, and now I use hospital transport as I am blind and in a wheelchair so cannot travel. Prior to this, I used to get the train from Hertfordshire.

[Jenkinsaj in reply to patriciagrant]

Hi Patricia grant

Thank you so much that's really helpful. Good luck with all your treatment.

[LOVELY_1]

I am a volanteer at the London Clinic and 99% of patients have nothing but praise for the doctor and services the there. Also it is weekly which is a plus but there is a waiting list. Give it a go.

[Jenkinsaj in reply to LOVELY_1]

Thank you so much Lovely 1, that is really useful. These places cant manage without you fabulous volunteers, the hospice where i work is hugely supported by volunteers, well done you. Many thanks

[Litty]

OK I have never been to the Oxford Centre, so can say nothing!. I have been going annuallyish to see Dr Giunti in London for over 10 years. I like to be on their books in case they find any treatments. I have SCA1.

I live on the Worcester/Hereford border so travelling to London, Queens Square is a nightmare. Over the years we have shifted from the train to driving but parking is really hard. They are never on time and we always try for a 1pm appointment but they are normally an hour late (the worst was 3hrs). Try to get someone to ring and talk to the doctor’s secretary for an appointment. Eat lunch and have snacks and drink with you.

I do like them and my son was just tested there but they are not good at time keeping and parking is not good. Not sure where you are located or how wobbly your husband is and if he needs testing. They all need to be considered but good luck : )

[Jenkinsaj in reply to Litty]

Thank you so much for your kind reply. He's not too bad at the moment. What we really want is some thoughtful comprehensive testing and support. Am hoping that a second opinion might be of more use. Our current neurologist isn't really interested and was totally surprised that cerebellar atrophy was found.