Anonymous 16/09/14
Last reply 3 years ago
Finding the right neuro

My health is stable at the moment and presently I am happy with my MS team. I worry though that should MS raise its ugly head I may not be best placed to get the treatment I would want. I’m considering asking to be referred elsewhere and some hundred miles away where I believe I’d have the best chance.

Has anyone else done this? Am I able to request this? Despite the commissioning paper its such a lottery. Finding a proactive neuro is like finding a needle in a haystack. We could almost do with yellow pages type advertising of MS services which publish individual neuro / Trust value statements!

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3 years ago

Yes, wouldn’t it be nice to have a consistent playing field across the board…..

3 years ago

I asked my gp to refer me to the UCLH in London. Its the national centre for neurology and neurosurgery so I thought it’d be the best.

I did this because my neuro doesn’t listen to me at all. Says which dmd I take is my choice then doesn’t give me the choice when I decide what I want.

Patient choice means you can go anywhere in the country that you want. My gp tried to put me off by saying she’d have to pass the request to the office to apply for funding which is a load of rubbish! I’ve been told that they don’t like it because it causes extra work for them but its tough tatties I say!

It is hard to find the right neuro, I just decided on the hospital and am hoping for the best. Look at the websites then click through to see the consultants details. It tells you what their interests & specialities are then you can match it to your needs.

I don’t know if I’ve made the right decision yet. It could be months before I see anyone. …

3 years ago

My GP referred me for a second opinion after seeing the total mess I was in following my first visit to the local lot. I am where @lornies is, no complaints, great team. Have a look at Barts, though – according to their blog, they give annual MRIs and thyroid testing…. neither of which I believe is done routinely elsewhere (may be wrong on this). BTW, if I’d stuck with my first local guy, I seriously reckon I’d be off my feet by now. Sobering thought… you’re so right to be proactive.

3 years ago

PS Should also have mentioned that as there are more drugs available, the business of deciding and advising between them is getting very specialist (I’ve read this on the Barts blog). This means that more than ever it’s critical to get a neuro who is completely up to speed: in my view this is more likely if s/he is a) has MS as their specialism … i.e. most/all of their patients are MSers and b) is involved in MS research. As @lornie says, you’ll soon get the measure of this with a bit of internet research. Best of luck.

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