Sheffield referral

[Jenandbeth]

Beth has SCA 19/22 diagnosis that is slowly degenerating. I am finding it increasingly frustrating to access appropriate help from professionals who don't have an expert understanding of the condition. I wondered if I should push for referral to Sheffield Ataxia centre as my understanding was they could do a multi disciplinary assessment that would better help me plan for her future. I phoned a consultant's secretary at Sheffield ( it was number that came up on Google search) yesterday and found it very confusing as she seemed to be saying they only took referrals from patients with gluten ataxia!?! This was not my understanding. Can anyone enlighten me as to whether there is a UK ataxia centre where Beth could be referred for multi disciplinary assessment and if so if it's worth it and how I go about it ( we are in Scotland). Thanks, Jennie

[wobblybee]

🤔As far as I’m aware..referral to an Ataxia Centre can be made by a GP, or a Neurologist..I haven’t seen anybody mention ‘eligibility’ re Sheffield.

I’m in Newcastle..we used to have an Ataxia Centre here…before it closed my Neurologist referred me to Queen Square in London for specific testing. They do have a team there.

🤔 Ring AtaxiaUK Helpline tomorrow

ataxia.org.uk/support-servi...

[Sea_]

I’m in Northern Ireland and I asked both my gp and neurologist to refer me to London last August and they got my referral about last October and I got seen last month.

It was very good and they did genetic testing not yet available in NI . So worth it, good luck and agree the helpline will help too

S

S

G

[paul456]

Hi Jennie

Maybe try the Neurology centre in Newcastle RVI that’s where I go for my yearly appointment with Dr Ying , I have Sca 6.

He’s head of research so for certain types of ataxia so I also do research as a lab rat.

The only tel number I have is 0191 282 4444 not sure if that’s a direct number but it will be a start point.

I used to go to London but come to an agreement with Dr Ying I help with research he takes puts me on his books win win 😊

Good luck my friend stay strong and take care x

[majajefferies]

Hi Jen,

First of all, please look at this page:

ataxia.org.uk/newly-diagnos...

The contact details are on there for the Sheffield and other centres.

Your primary (GP) should refer Beth to any consultant of your choosing, in any location of your choosing. you can then ask for as many second, third, fourth, etc. opinions as you wish.