The Ataxia.UK Specialist Centre At The John Radcliffe Hospital - my experience

Specialist Ataxia Centre at the John Radcliffe, Oxford

Referral

I contacted Ataxia UK initially to tell them I was interested in going to the John Radcliffe Centre as my local neurologist is good (he knows about FA) but my medical team didn’t seem to be aware of FA and at very least, knew the name. Apart from my neurologist my medical team consists of a cardiologist, GP and pain consultant (for my scoliosis pain – not ataxia related). I have nobody medically for mobility e.g. physio, but I do have a good OT. I contacted Ataxia UK to express my interest in attending an Ataxia Specialist Centre and they told me I’d have to get my local neurologist to refer me. I did this and we found my local centre is the John Radcliffe, Oxford but there is also another centre in London available.

First appointment

At my very first appointment over 2 years ago (I think), I met my consultant Dr.Cadar. He is now my Ataxia consultant. He had some information on me but not a lot so he asked me many questions such as when was I diagnosed, areas affected, how bad and am I wheelchair bound. After this he examined my legs – while I was sat in my wheelchair. He asked whether I’d be interested in hearing about possible research for Friedreich’s Ataxia, which I agreed to. He said he needed consent from individual patients to pass on information about research. He also asked about whether I’d like to be put into contact with other Ataxians who live near me and who were of a similar age, which I agreed to. He also told me about an Ataxia nurse he could introduce me to as she may be able to offer me help continually as I may find it difficult to get In touch with him. Although he didn’t state it I felt he understood that it maybe easier for me to talk to the Ataxia Nurse as she’s female, than to talk direct to him in some situations, even if she relays the information on my behalf (other Ataxians may also benefit from this).

Second appointment

When I went back this year I was introduced to my Ataxia Nurse who is called Ruth Valentine. I can email her whenever I have any questions or problems. She then gets back to me quite quickly either with her own reply if she knows the answer or after speaking to Dr Cadar about my issue and his reply. There is also another consultant available she can ask for information, Dr Andrea Nemeth (although she mainly does research). For example, when I was experiencing problems with my feet I emailed her because I didn’t know which doctor to ask the GP to refer me to. She asked Dr Cadar and Dr Nemeth to double check she was advising me correctly. On their reply she emailed me and said they could refer me to an orthopaedic consultant or my GP could which would mean the referral would go to a local hospital. This helped me a lot as I don’t have regular contact with my neurologist, I’m on a yearly appointment. With my GP I only get a 5 minute appointment so I like to know what I’m going to ask before I go in. From this information I was referred to a local orthopaedic consultant so I could receive local treatment. Following my enquiry to Ruth Valentine about my feet I was also referred to see Dr.Henderson- Slater whose official job title is Consultant in Neurological Disability and Rehabilitation Medicine. I was informed he will help with my mobility as well as being able to refer me to other consultants as required.

For me this is really helpful as my local physios have officially given up on me as they can’t cure Ataxia so they have discharged me. At the time of writing this I haven’t attended the appointment but I’ll let everyone know if there’s any useful outcome.

I’d definitely recommend going to the Ataxia specialist centre nearest to you. I found them and the staff helpful as I feel less isolated and can get an answer to medical questions quickly so I’m not worrying about it. It’s also good to go into a doctors room without getting that confused and glazed look when they hear you’ve got FA or CA or unknown Ataxia, I really felt they knew what they were talking about and I know they gain stuff from us e.g. knowledge as we do from them e.g. referrals, research. I also told Ruth Valentine and the Ataxia UK office I’m happy to email/Facebook anyone who feels they’d like someone to talk to.

Nikki Stowe

25 Replies

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  • I am so glad that you have had such an excellent experience with Oxford. We are so lucky having Ataxia Centres and I will definitely keep using the London one, even though it is so far away.

    As you can see from my previous post (link at bottom), people have had quite mixed visits to London. People do not mind waiting as long as they know roughly how long, so they can go off and eat, use the loo, walk about etc…

    Perhaps Harriet could have a polite, gentle word to explain?

    ataxia-uk.healthunlocked.co...

  • Yea I have to say the appointments at the john Radcliffe dont really have alot of waiting both to get the appointment and in the waiting room. I mean yea u get the quarter hour wait but I find thats standard at any hospital

  • I go to Dr Cader at the John Radcliff too.Also I have seen Andrea.Feel a bit discarded as no-one knows what caused it .My Ataxia nurse is Ruth as well.In the dark .Lots of interest initially but feel like a stastistic.Glad your ex[erience was positive.

  • hey sorry your experiencee wasnt so great, i didnt mean to write this as a kind of guarantee every1s experience will be like this but i just thought id make people aware of the centre. for me its been good that people even know the word ataxia rather than the confused look.

    have u got one of the unknown ataxia's or just not got a diagnosis yet? i had a strong diagnosis of FA from the start but i know people who have been given many different diagnosis's and passed between doctors. have they not sent you your next appointment? i see dr cader yearly but ruths available whenever for contact. im seeing her for a meeting on 25th jan if you'd like me to say anything?

  • Thanks for putting this up here - it's really helpful. I've read about the ataxia centres and really want to be referred to one.

    Up until recently, I saw a local neurologist. From my point of view, these appointments were completely pointless. Each appointment consisted of him asking me questions and not listening to the answers, trying to tell me what I needed (if I told once I told him a hundred times - a walking stick will not help me, but apparently he knew me better than I know myself, and thought that everyone with FA is exactly the same), not listening to or answering questions I asked (when I was brave enough to bring them up), and then telling me that there have been no breakthroughs treatmentwise, but that these appointments are very important(?)! And then I had the audacity to bring up being referred to an ataxia centre, which didn't go down well.

    Sorry for the rant. I've not exactly had good experience with hospital appointments but I thought they reflected the nature of FA - that there's nothing that can be done. It's nice to know of someone who's had a more positive experience and that it might be my relationship with my neurologist that is/was bad, not the appointments themselves. I'm going to look into whether I can be referred by anyone other than my neurologist.

    So... thanks!

  • Glad u found it helpgul. Your gp should be able to refer you. My appointments yearly are a bit pointless but their useful doctors to have encase u have a question or if something goes wrong. Hospitals never a great place to be just grin and bare it. If your their cos u have something u want looking at its great but if your there cos someone else says u should see this Dr so they can learn from u it's endless.

    If you don't mind me saying a walking stick is likely to be pointless to people with fa as ataxian affects balance. I know a few who've had them but most find them pointless.

  • My gp referred me to the local rehabilitation hospital but after a ten week delay the hospital has decided not to see me and has referred me to the falls clinic.I have already seen someone at this particular unit and attended a course of exercise before I was diagnosed So it is back to sqare one.I also feel I have been tossed to one side.I understand the Ataxia is untreatable but some advice on making life easier would be good

  • Yea I was like that before the john Radcliffe. I learnt u have to shout to be heard

  • I've grinned and bared it for years - they're a useful contact to have, but I can't face going again. I always left feeling down, and any question I asked (that was answered) was answered very briefly and in a very condescending way - I don't really appreciate being spoken to like a child by a neurologist - I get enough of that in everyday life!

    That's what I always thought about walking sticks. I couldn't see how anyone who knew about FA could think that having another thing to coordinate would help. (I know they can help people who can walk pretty well - but my neurologist didn't see me when I could walk pretty well)

  • By the way, I think my complaints are due to my neurologist rather than neurologists in general (I hope so anyway!).

  • I, too, am glad that Nikki Stowe had a positive experience. There are no ataxia centers here (Israel); no nurses;basically nothing but regular neurologists who might or might not call/email you back. I go to my various appointments and basically the same thing happens each time. For Brits with an auto-immune suspicion (behind the ataxia) check out this guy Dr. Mario Something (Finnish name). I can look him up in my email if need be. He has a drug and stuff. I was thinking of travelling to the UK to meet him. Neta

  • Hi Neta

    Do you mean Dr Marios Hadjivassilou?

    Harriet

  • Yes. That's the man. He also wrote on the topic. It's on the Internet. N

  • He is a Consultant Neurologist at the Specialist Ataxia Centre in Sheffield in the North of England.

    Harriet

  • Hi all

    I was born in the John Radcliffe.Talk about full circle.I get the impression that those who haven't got an accredited Ataxia Clinic would like one and those who go to one are sometimes disappointed.

    I have been following this argument with interest.

    I have found that despite there being no cure most us want too be listened to and we are disappointed if we come back from the neurologist feeling negative.

    That must put a huge strain on the neurologist but I can understand both views.

    I too have come away from the clinic feeling disppointed but that is because I felt like another person with CA and all the tests in the world won't make any difference.But on the positive side;

    Someone else understands Ataxia without looking blankly at you.

    You are in the right place to hear about the latest research.

    You can keep in touch regularly with the Ataxia nurse.

    How many times have you thought about questions after the annual visit?

    A Walking Stick would be useless for me now but canes were useful for about one or two years,then a rollator and now a road scooter.There has been progression of the disease but I have learnt to adapt and there are good sides.

    To go back to the initial argument.I think

    There is not at the moment a miracle cure and our Neurologists haven't got all the answers.

    What many of us want to know is there anything we can do now to change things for the better?

  • Yea if u go in wanting a cure u will be disappointed. If you go in looking for help with a symptom u stand better chance. My neurologist enabled me ti get my assistance dog so in some way they help

  • What is a rollator? Neta

  • A 3 or 4 wheeled walker u push it for balance when you walk. The 4 wheeled ones have a seat if you get tired

  • Thanks. I think my mother has that in NYC for her Parkinson's.I can still get around w/o a cane but I look upon these devices with a degree of envy. Neta

  • I use my rollator for the garden and I did use it for walking.I can stand on my legs but I can't go forward so I use my rollaator for balance.It is very useful but I have only just needed extra balance inside.

    I think its a balance between walking,keeping muscles going and safety.

  • yea i used mine indoor and out but i soon felt very vulnerable using it outside and as my falling increased i realised the walker wasnt help, (for me) and as i spent alot of time on my own at home as falling became more of an issue indoors it was no longer safe as if i fell when i was at home i couldnt get up. so personally for me a wheelchair was great solution as ive fallen like 3 times in 5 years not daily as i was with the walker - just my experiemce

  • I have spoken to my GP about referral to The John Radcliffe Centre He has asked me to let him have details of the unit as he has very little information I have been unable to find information on the John Radcliffe Website Have you any idea where I can find the neccessary info to pass on to himplease?

  • Hi laddie

    I would advise ringing the Ataxia UK helpline on 08456440606 or e-mail helpline@ataxia.org.uk.

    Best Wishes

    Harriet

  • ThankyounI have been in touch with someone on the helpline she was very helpful and is sending details and an information pack for my GP

  • hi laddie yes i got all info from ataxia.uk it was in the ataxian ages ago so theyll have record of it

    hope that helps?

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