Specialist Ataxia Centre at the John Radcliffe, Oxford
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.
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).
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.