I phoned the number for the MS nurse that i got from the letter I received after my diagnosis to see if I could get some advice about DVLA and such and had to leave a message to get called back. 4 days later I got a call from the nurse who said the soonest they could be in my town was 2 months away and I would have to drive all the way to Preston to see them sooner. I’ve since had someone tell me that their MS nurse came to them within a couple days of being called. So, does your MS nurse come to you? If not, how long do you have to wait to see them? I have to admit that I’m a little disappointed with the fact I have to wait months to see the MS nurse as everywhere seems to say that I should discuss any concerns with the nurse.
I’m in Ireland but there are two nurses I see. One is my copaxone nurse and she met me within a couple of days and regularly calls me and I’d say would be easy to meet with. She’s hired by the drug company.
Then there is the MS nurse from the hospital. I called her and to be honest she wasn’t overly helpful. The last dose of IV steroids I had didn’t help so she is going to mention it to the consultant and she also told me to get in touch with my GP to arrange physio.
She told me if I had any concerns to call her but I don’t really and to be honest I’m in very good health so don’t need much support so maybe that’s why she wasn’t too concerned.
Are you on meds? Have you got a med nurse?
Can you reach the MS nurse on the phone and ask advice without meeting her?
I guess location is a factor too.
It varies massively. I rarely see my MS nurse, but speak to her on the phone when needed - to the extent that when she spotted me in the hospital one day and said hello, I recognised her voice, but not her face! On the other hand, my friend who lives only a couple of miles away is in a different PCT and had her MS nurse, physio, continence nurse and OT call at her home weekly / bimonthly until she told them to stop, she didn’t need it!
Long-term, it really helps to be as knowledgeable as possible, but when you have to get hold of a nurse, it’s often fine to just speak to them rather than see them. Of course, then you get the pleasure of multiple conversations with an answerphone, but if you persevere, you usually get a call back.
If you want advice about the DVLA and stuff like that, then you are usually much better asking on the Everyday Living forum. In fact, it’s often quicker to get advice about everything by posting than by phoning a nurse! (The advice is sometimes better too!)
Karen x
I have to say the copaxone nurse has always come to the house.
OT,physio and continence nurse also do home visits and the 2 ms nurses saw me monthly and now 3 monthly at a small local hosp (bit like a cottage hosp).I did also have a neuro rehab nurse who came to the house but we agreed that this was overload and her time could be better spent with other people.
I have to say I agree with Karen re benefits as no one I see knows anything unless its letters for needles on holiday or letters to employers re difficulties.
I also think that anything you feel the need to discuss with the nurse can be more fully answered on here,but it is important that you get dialogue going with your nurse, especially if DMDs are an option because it takes a while after agreeing which ones you want for the paperwork etc to be completed and funding agreed.
If DMDs are an option I would go for the quickest route because at least when you have been seen you can make your next appt there and then.It may be possible at that stage to then agree to be seen at a closer venue.
Take care
Pip
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If you want advice about the DVLA and stuff like that, then you are usually much better asking on the Everyday Living forum. In fact, it’s often quicker to get advice about everything by posting than by phoning a nurse! (The advice is sometimes better too!)
Karen x
[/quote] Thanks Karen, I always end up on this part of the forum. It never occurred to me to go to the everyday living section! Andy
My ms nurse is useless. She said she would call 8 weeks after I started copaxone, this was 14 weeks ago, I have seen her once when I was first diagnosed last march time, she doesn’t return calls either. I asked my gp why the Nhs pay her a wage. He wrote to her after this discussion yet I still haven’t heard from her. I give up
It is the post-code lottery again, with complications.
I attend a hospital 30 miles away - and the nurses do not do home visits.
The Neurology Nurse, who works out of our local community hospital (1 mile) does do home visits.
She is administered by “my” hospital, but reports to consultants in a different hospital which is much nearer (12 miles), but in a different county. And, of course, my county is covered by exactly one PCT (until March, when the new system takes over).
Geoff
thanks for your feedback guys! I am off to a meet up on wednesday so I’ll ask there too… maybe I just got registered at the wrong place…