The John Radcliffe Hospital, Dr. Henderson- Slater, Consultant in Neurological Disability and Rehabilitation Medicine & the OCE

[nikkistowe]

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.

[cclive35]

i would like to see this doctor

[nikkistowe Volunteer in reply to cclive35]

r u under the john radcliffe centre? im not sure how else you'd get refered

[cclive35 in reply to nikkistowe]

no i have had ataxia for 20 yrs after brain surgery. it would be nice to meet someone to meet someone in the medical proffesion who takes it seriously i know awareness is getting much better but recently i was in hospital with broken ankle. when i tried to explain that i wouldnt be able to use crutches i was told they would get someone to teach me lol when i still couldnt i was asked why not hop i had explained by showing the card but kno-one had heard of it

[nikkistowe Volunteer in reply to cclive35]

i had exactly the same experience, i broke my ankle 8 years ago at college and after trying to explain y i fell and no i hadnt been drinking, they presented me with crutches and i was like well that isnt going to work. but they discharged me and i had to go to college leaning on 2 frinds cos i just couldnt do the crutches so i totally understand. yea ask ur gp for a referral or ask ataxia office for info and take it to the gp and say this is what i want - thats what i did

[cclive35 in reply to nikkistowe]

ok thankyou

[silkwood]

Hi Nikki

I have my appointment with Dr Cader in Feb.We are staying for the weekend near Oxford.

My Cerebellar Disease is unknown cause.How have you got on today.

Do you know any medication for intention tremors.Fed up with wearing my dinner and not being able to hold a biscuit.

[nikkistowe Volunteer in reply to silkwood]

hey no sorry i dont, i know what you mean about wearing your dinner and holding small things its not the best look. i dropped a cup of hot tea all down my front at work and they helped me get cleaned up by i could also sense their confusion in y i'd dropped the cup in the first place. dr cadar would be the best person to ask or ruth valentine (if your under her) ? or harryb may know. hope that helps

[Cjkerry86]

This is fab nik!!! Dr guinti is doing a similar thing with me next week, but it's not over 2 weeks if she is independent she won't know about this or would she?!xxx

[nikkistowe Volunteer]

yea she will cos shes part of the ataxia clinic? it wont be done in 1 session it takes many sessions thats y its 2 weeks cos they cover everything. bit confused what u mean by independent? x

[february]

I live in the United States, and would definitely like to see this doctor if it was feasible! I have ataxia of an unknown cause, and although my neurologist is an expert in ataxia, I've noticed the UK seems to have a lot more resources, with ataxia centers and such! Anyone who lives there is lucky (NOT to have ataxia, but to have access to all your great resources if you do)!!! ;o)

[nikkistowe Volunteer in reply to february]

i have no experience of ataxia in the states, i have relatives who live there and theyd never heard of it before my diagnosis but i dont know if thats because of lack of knowledge in the states or general lack of awareness. i wish i knew how to tell people to get referred to see this doctor , i only know how i was referred. i do know this unit does see private and nhs patients if that helps at all. you could allways contact them? i dont have the link on me but if you google: oxford centre of enablement itll show you the website. hope this helps?

[Hidden]

Can't complain too much about my Neurologist because he refferred me into hospital for five weeks to undergo rehabilitation simmilar to how its descibed at the top of the page. The rehabilitation programme I underwent was brilliant.

[february]

HI Nikki, I appreciate your comments! Thank you...;o)

[nikkistowe Volunteer in reply to february]

I hope I've helped. If I can help more let me know