A quick question for people with RRMS...Inspired by the post on nurses and neuros being not too helpful.....

Hi,

As of January I see my Neuro once a year -I wish he was a multi-tasker and was a Neuro, MS Nurse and Consultant all in one cos hes so lovely and the most helpful out of them all.

As for my MS nurse I see her (unfortunatley) every six months but since I thought I was relapsing I saw her a month after I first saw her. She is rubbish, not one bit helpful. They take ages as in days to get back to you…thats if they remember that you actually rang them!!

I see my last Neuro every 6 months or when needed, he’s always frank and will humour me with any questions I
have. I have never seen my MS nurse despite the previous Neuro saying he would organize a coffee session with her and he was a bit of a dither then vanished.

I have no complaints with current Neuro and from what I have heard from other people I really count myself as lucky to have him.

Dare I use the words “Post Code Lottery”?

I go to a hospital 30 miles away - because I trust the people there.
I could transfer to a hospital just 12 miles away (and probably end up under the neurologist/neuro nurse who look after my wife (Parkinsons). I have met both of them (the nurse calls every six months), but why should I change?

I see my neuro every year, and my MS nurse every year - so I see one of them every six months. I can ring my nurse - and I get a call back quickly. I can e-mail my nurse, and she will mail back or phone, quickly. My questions get answered there and then. Last visit (last month - to the neuro) he saw my dropped foot - started talking about FES - and I have an appointment at Odstock next week.

Like I said, I trust them.

Geoff

Just to clarify: it wasn’t my assertion; it was the result of a large study. I should have been clearer however: asking almost certainly won’t get you DMDs if you aren’t eligible. But if you don’t ask when you are eligible then you reduce your odds of getting them. Not asking can also mean not getting DMDs, treatment, equipment & non-DMD meds as quickly as you could have done too.

It’s wrong, because the NHS should be equal for all, but it is so important to keep up-to-date with new meds, changes in criteria etc and to ask for things; not wait to be offered them. People who ask, are much more likely to get.

Kx

Sometimes a letter to a neuro can work wonders. A lot of them are horribly busy and rush through consultations so coming at them from another direction can help. If you write a letter or send an email, cc’d to his secretary and your nurse, saying “As we discussed… betaferon side effects are terrible… please could you authorise for me to switch to X?” and then follow up with the secretary and the nurse after a week, and then another week. If you still don’t get a reply, then perhaps someone new would be best. Pretty useless having a neuro who doesn’t care

Karen x