Forum

Can't get to see MS nurse damnit

I have an appointment next month to see one of the 2 MS nurses near where I live and have just found out that the lady who was supposed to take me cant do it on that day

I have tried calling the appointment team but could not get through I am really worried as I really wanted to see the nurse.

What does a MS nurse do anyway?

Jon,

It might not be much consolation, but I’ve NEVER had an MS nurse, despite being diagnosed almost two years ago.

I know they do exist in my area, so I’m not sure if there’s an actual reason, or if I just slipped through the net somehow (Is it something to do with the fact I started my journey as a private patient?)

Anyway, if there’s anything you’re worried about, there’s no reason at all you can’t just see the GP. Although some people swear by them, MS nurses aren’t the only route to help if there’s a problem. GP should be able to deal with most everyday things that crop up with MS, and/or refer to the neuro or other specialist, as appropriate. There’s no need to wait for an MS nurse, if there’s stuff that needs dealing with NOW. Just go to your doctor.

Tina

An MS nurse is your conduit to the neuro. If you have a new symptom, they’ll advise re meds or treatment so you can tell your GP (which prevents any hold up because of the “I can’t prescribe that without approval” stuff). If you need therapy, they’ll refer you to someone else in the team they work in. If you ask them a question and they either can’t or aren’t allowed to answer, they’ll ask the neuro and get back to you. If you need to see the neuro (because they can’t deal with your problem themself), they can make an appointment for you or ask the neuro to fit you in.

Sounds great. Unfortunately it doesn’t always work in practice because they have far too many patients on their books so a lot of people tend to end up talking to an answerphone rather than a person. Also, some are better than others and some PCTs don’t have MS teams so referring you to anyone else doesn’t get done. However, it is really good to know that there is someone you can call who can advise re meds and who your GP will listen to. That in itself is worth having a nurse.

I hope the new appointment isn’t too far off.

Karen x

Jon

I find my ms nurse a great help. If i am having any problems inbetween my yearly neuro appointments she will help me and advise me about what to do.

Try to phone her again - they tend to be very busy. Some nurses - if they don’t live too far away from you will do home visits if you are really struggling.

Sometimes hospitals have help with transport also. My hospital has a ms co-ordinator that can help. Some gp surgeries have a hospital transport scheme also.

You could ask your gp about what help you can get with transport to get to that appointment. It seems a shame to miss it. There is help out there but you have to ask for it.

Best wishes

Teresa. x

Sorry,

I’ve just realised I completely misread your post. When you said “the lady who was supposed to take you”, for some reason I interpreted this as being the nurse you were supposed to have the appointment with. I didn’t realise it was purely a transport problem, and thought the nurse herself must have cancelled. Hence the advice to go to the doctor instead.

If it’s NOT a problem with availability of the nurses, then I agree it makes sense to try to get the transport sorted out, rather than forego the appointment.

But MS nurses still aren’t the be all and end all. If you ever, for any reason, can’t get to see one, don’t rule out your doctor as an alternative route. They CAN prescribe symptom relief (mine needed a little bit of education on that subject, but she’s fine now), and they can refer to neuro, physiotherapy etc. as required.

Tina

Hi, I think you answered my post the other day about my l,ea for info about The Walton Centre. Thanks to you I phoned them and they called me back within 48 hours. The nurse I spoke to was fantastic, loads of info, helped with pain relief questions and reassured me she will be there for appt with neuro in Sept. If I were you I would try and keep my appt as I have just received my first appt with them…17 Dec!! Carolyne.