just read in my local ms branch letter that my area [medway] ms nurse is resigning.being fairly newly dx i had only met him twice. but feel a little alone now as my original neuro has also moved on. i dont think i upset both of them!! anyway now i have no neuro and no ms nurse. what will happen if anything happens- i am well now and been extremely lucky since dx. i have a good doctor,should i be actively looking or will these people be replaced and i will just get notified by letter. the situation was that i had a ms nurse appointment in 6 months and the neuro app would be due about september. kim
Yeah you’ll get a new nurse & doctor. My gp retired about 2months after I got DX, was gutted coz I liked him. And he was always there willing to help. Plus he wanted to see me regularly, make sure I was ok. Now he’s left I’ve just been seeing different GPS each time, its annoying trying to find one I like.
The hospital should be sorting all that out for you, o you need to worry
So far I’ve seen three different drs at my hospital, I haven’t been DX long
I know just how you feel hopeful. I don’t have a neuro or nurse because I’m not on dmds. Like you I have a good gp though and good family support. I feel for those who don’t. Like Minnie_mouse says you should be allocated another nurse. Why not give the branch a ring and have a word with them, I’m sure they will put your mind at rest. Take care x
Would you like to have a neuro or MS nurse, Blossom?
I only ask because it’s NOT conditional on accepting or even being eligible for DMDs.
I’m not on DMDs, but still have a neuro, and could access an MS nurse if I wanted to, though I’ve only ever tried once, but found it a complete waste of time.
I don’t honestly feel it would make any significant difference to my life if neuro and MS nurse both disappeared tomorrow, as I tend to find my visits there both stressful and pointless. We tend always to leave everything exactly as it is - I don’t think they’ve ever changed anything, so I don’t feel I’d miss it much if I didn’t bother to go.
BUT if you’d really like a neuro or MS nurse, not being on DMDs should not be used as an excuse to deny it. As I understand it, more than half of people with MS aren’t on DMDs - either because they aren’t eligible, or have declined. It’s not the case than none of these people are entitled to access the neuro team. Having MS is enough - it’s nothing to do with what you do or don’t take for it.
If it doesn’t bother you, then fine (I feel I’d get on just as well or possibly better with GP only, too). But if you feel you’re missing out, query what “not being on DMDs” has to do with it, as you should be able to access a neuro regardless, if you want to.
Sorry to the original poster for having taken this slightly off-topic.
That’s ridiculous, Noreen! If the published stats on DMD uptake are correct, that means MOST MSers in your area don’t have a neuro at all! I can’t remember where you are exactly, but I didn’t think it was the back of beyond, exactly. I do feel my neuro visits are largely a waste of time, and wouldn’t particularly mind making way for someone who needed it more, but I agree with you, it’s the principle. It’s a serious and unpredictable illness. I’ve also got a sense of unease that in effect, it’s a sanction if you decline DMDs. Whatever people’s reasons for accepting or not accepting, fears it will affect their access to specialist care shouldn’t play any part. It’s unethical that a patient’s treatment decisions should affect their access to specialist care in any way. I thought there was something in law that specifically prohibited that. Patients are supposed to have the freedom to reject any intervention, for any reason - whether or not it’s in their own best interests. It’s hardly a free choice if it’s clear they’ll be penalised in terms of what other care and help they can receive. Tina x
It’s york trust Tina and I Iive in Bridlington, which as an outreach clinic.
My gp did say I can be re- referred if I need it but it would have been nice to have had that choice of contact with an MS nurse. Since my diagnosis last year, a lot of what I have learnt has been from this forum. I went from getting a diagnosis to discharge and off you go and get on with it. My heart goes out to those who have no support or no confidence to deal with medical people.
One other big concern on my mind is, when people start having to reapply for their benefits. It’s not going to look good if we can’t show we haven’t seen a neurologist. Looks like we don’t have any problems…is this going to complicate our claims even further.
I hope my gp never leaves…she is always happy to write these forms for me.
PS; Sorry Kim, hope you don’t mind me discussing this on your thread?
Tina x