Hello,
sorry for anon, just ask if you want to know who iam and i will pm you.
I was just wondering some people have regular appointments with a ms nurse, some have them visit them at home and some can get hold of them on the phone. So why is it that others (like me) can’t even get hold of their ms nurse? It took 4-5 weeks to get hold of them on the phone. I never had an appointment for anything other than to tell them which dmd i chose
Is this normal contact with ms nurse?
Honestly. No.
You should be able to contact your nurse easily as a first point of contact if you have any questions with regards to your MS. I know with mine if I think I’m having a relapse my first point of contact is my GP as she’s mainly a support to the neuros.
Mine can sometimes take a few days to return a call but with only 2 nurses for a lot of patients it’s expected.
Hi anon,
I wish i had a good answer for you. After my diagnosis i was refered to my nurse and she always visits me at home and is contactable by mobile. I don’t see her reguarlay as such. If i relapse she comes to see if im coping.
Maybe there are staffing issues where you live or budget constraints?
Have you asked your nurse for a consultation? Just a thought, maybe they dont know you are waiting for them? Maybe worth askling neuros secretary for advice ( a mobile number etc…?)
I do know there are people that struggle contacting there health proffesionals, sadly i think maybe it’s a bit of a postcode lottery 
Me either. The hospital MS nurse sometimes takes a couple of days to get back but my community MS nurse has left me her mobile and usually rings back within a couple of hours. But they are understaffed and over worked with huge patient lists. Xx
Hi Anon,
I’ve never had one either, although I’d heard of these mythical beings, and probably even seen them in the same building at neuro appointments - just never been formally assigned one, or ever introduced!
Spoke to one for the first time last week - 2.5 years post diagnosis! Not yet sure if it was worth it, as at first all she offered was I could go and see her at the hospital for “coffee and a chat”. Not what I was wanting, as I’m having a specific problem with medication - not likely to be solved by coffee and a bit of “There, there”, I don’t think.
So now she’s referred me for physio. Again, not really what I want, as I actually want someone to review and change the medication to something that works. Apparently, the physio can do this, IF she thinks it’s justified, but having to have a physio appointment you don’t want, just to get your medication reviewed, seems an awfully long way to go about it. I’ve been taking it 2.5 years - I think I can tell if it’s working or not (It used to; now it doesn’t), and I don’t think it’s a physio problem.
Tina
hi there i was dx 4yrs ago saw ms nurse once in the first three months,never seen her again .called several times never got a reply so i havegiven up.i now rely on my lovely gp she,s a treasure.asked my nuero why i couldn,t get a visit from the nurse she said she,ed look into it she,s still looking.so unfortuanately there are some bad and some good nurses guess we were just unlucky
take care xx
Hi Anon,if you live in the North West and are under Walton Neuro, that is about par for the course.
Wb
Hi Anoin,
I phone my ms nurse and if she’s not there I leave a mesage and she always gets back to me. She comes to my home and sees me at regular intervals. So I can’t complain about her at all.
Janet
x
i have a ms nurse, he said he would get the dr to put me on a course of steroids and send a urine sample form out for me to send into my drs so i can have a bladder scan done, so far nothing has happened, i dont want to call to see whats happened as last time he sounded p’d off that i called him, so now it looks like no bladder scan and im stuffed with my toilet problems and no steroids either, i dont think im going to call him again, i’ll just leave it to save a p’d off attitude in the future
Vicki (It is Vicki as used to be, isn’t it?)
Do you want the bladder scan and the steroids, or not? If you do, then you’re going to have to take ownership of the problem, and chase someone up about it, because the only person to suffer if you won’t speak up is YOU.
If things aren’t going well with the nurse, then try the doctor - explain that you’ve been in touch with the nurse, and what you thought was going to happen, but that nothing has, and let them chase it up at their end!
Tina
Wow ms nurses are not all that great then, one person has regular meetings, one has home visits and the rest never get to see them. A mixed bag really, shame.
Thanks everyone
Tina, No its not Vicki, but Iam sure she is happy with your post.
This is a really variable situation.
The MS nurses who “look after” me are hospital based 28 miles away, never go out, but always return phone-calls and e-mails within 24 hours Mind you, it does help to know which is their day off during the week - but then it is the same phone number so that they can cover for each other.
Locally, we have a commmunity hospital based Neuro nurse, who does MS, Parkinsons, and a few other things, and does both clinics and home visits. The phone system to contact her is a bit tedious, but again her response to e-mails is very fast (that is for my wife’s Parkinsons). There is a silly situation where she works from our local hospital, is administered by the hospital I come under, but reports to a Neurology team in a District hospital in another county (that just happens to be nearer)
Did I hear the words "Post Code Lottery) ?
Geoff
I have regular 6th monthly appointments or annual whichever I want and can contact by email or phone.
In my area they’ve just appointed a 2nd MS nurse (so hope my area is well covered. (very North west)
Contact your Dr and ask if there is one.
Jen
I had to ask about support when I was dx’d and then the hospital referred me to the local MS nurse. The trouble is she covers a huge geographical area and has hundreds of patients to get round so she only came round once for a coffee and a chat and then said she is at the end of the phone if I needed anything.
I did call on her once when I had a sensory relapse but it took her a week to get to me to prescribe medication; in that time I had barely slept due to the burning sensation. She did orchestrate the switch from my old auto-injector to the Rebismart so I will always be grateful for that. I do have a friend who lives more locally to the nurse who receives regular home visits but she is less mobile than I am and does not see a hospital team so often. To be fair if the nurse drove to see me she would have a 40 minute journey on a good day and in peak summer traffic it could take her 1.5 hours each way so it isn’t really practical just to check if I am okay.
I am seen by the nursing team at the hospital every 6 months as they always see me even when I have an appointment with the neuro. They reply to their messages on the same day, there are several of them, although I don’t have the same one each time they are all very pleasant and (dare I say it) they seem to be more knowledgeable than the local one (who has said some very odd things that I don’t quite agree with!). When I had a recent relapse they faxed the GP the same day with the protocol for high dose steroids. When Mum died they even said I could phone for emotional support - that’s definitely above and beyond the call of duty.
So, now I stick to the hospital nursing team just because I prefer the service I get from them.
Tracey x
Didn’t think it would differ that much. I only see a neuro every 6 months because iam on rebif. No ms nurse at the same time.
5 weeks is the record to get hold of the ms nurse they don’t even have an email adress or mobile number.
Very much a postcode lottery.
Thanks all.
Hi, not been on in a while, hope everyone is as well as can be.
I have an great MS Nurse, in South Glasgow. I can phone or email her whenever and as often as I need and she always returns my calls / emails.
I feel that no question is a silly question to her and that I can rely on her for prompt, honest and straightforward advice and help, she calls a spade a spade which is what I like and need and there is a hug if I get upset, which happened a lot in the beginning!
I can see from here that very sadly that is most certainly not the case for everyone
Jools
X