My appointment at the John Radcliffe Hospital With Dr. Henderson- Slater, Consultant in Neurological Disability and Rehabilitation Medicine
(OCE – The Oxford Centre Of Enablement)
Now I know your probably wondering who is he and what does he do? As was I when I received the referral as I wasn’t told I was being referred. So I googled him (as most probably do when given a doctors name they are not familiar with, or is that just me?).
Anyway the info given is:
“All aspects of care of patients with long term, debilitating neurological illnesses, in particular the care of people with behavioural disturbance and neuro-psychiatric problems; management and assessment of patients after amputation: management of phantom pain and other forms of neuropathic pain.”
Anyway as I said I wasn’t aware I was being referred as it was done from Dr.Nemeth as she felt it’d benefit me. So I attended the appointment, I took with me my hospital profile – which is an A4 document I made which lists my name, address, hospital number, emergency contacts, medical history and medication (I made this as I got sick of the hospitals always asking the same questions so I just put it in a document which I give them to keep each time, saves a lot of time! I’d highly recommend everyone make one as it gets really annoying).
So I went to the appointment, firstly he had no notes on me which I didn’t understand as my local hospital has 3 volumes of notes on me. Well funnily enough I found this worked in my favour. This mean he had no pre-conceived ideas about me, didn’t know anything abbot what I could or couldn’t do and we had to start right from the beginning. He wrote notes on my answers to his questions so he had a record (I won’t go greatly into my answers due to patient confidentiality and I’d probably bore you).
We started with family structure, family member names and ages (this made me feel like less of a hospital number and more like a person), ataxia carriers and any other illnesses present in the family genetics or hereditary. Then he asked age of diagnosis, when were symptoms first shown, what were they and who diagnosed me. This presented a problem as I was having my scoliosis fixed which led to a blood test which led to diagnosis so we can’t differentiate what was scoliosis caused and what was ataxia caused, I explained all this. He then asked what I do with my time (and those who know me know I work at an infant’s school and study for my NVQ3) I explained this plus I volunteer for ataxia.uk, john Radcliffe centre, health unlocked and dogs for the disabled.
Next we discussed my medication, purpose and any previous medical history and operations. He then did some tests which I haven’t done since I was diagnosed – 14 years ago, these included the ‘finger nose test’ and putting finger and thumb together in sequence and accurately. He then commented on deterioration and any weakness. He then asked about my long term plans, independent living etc. ??At the end of a long appointment he said he felt it’d benefit me to come in for a 2 week inpatients assessment with a multidisciplinary team who specialise in ataxia. This will involve seeing an OT, physio and psychologist as well as other professionals of intense sessions for 2 weeks where they will assess my abilities, what I can/ can’t do and what would help me. They will also give me things to continue at home and get my local hospital involved to continue the work. They will also teach me essential tools of how to help myself to get up when I fall and to minimise damage to myself when I do fall, which I should’ve received earlier but never did.
But this is dependent on getting funding from my local health authority so fingers crossed. I’d definitely recommend people go for a similar appointment; you can get referred via the ataxia.uk centres.
if she is independent she won't know about this or would she?!xxx
Still having problems with work
Speech therapy 
4yo undiagnosed Ataxia
Genetic Ataxia
Really, why????
