Contacting MS Nurse

I was wonderng if anyone could hep me out.

I have been diagnosed wt MS (r/) for 10yrs or so. I am going into relapse think. It started week a go and has been getting steadily worse.

I am under a neurologst at th walton cenre. In the past if i needed to see/speak to the ms nurse i would just phone the ms nurse office and leave a message on the answer phone. However this time when i phoned the contact number i got through to the MS advice line. The lady on the phone informed me that she could not offer any help or medical advice and could only schedule me in for a phone consultation with an ms nurse but this would not be untill next thursday (03/04) and if things turn into anything serious i am to go to my gp.

I wasnt sure about what was going on and felt confused so i have been to see my GP to clear things up. She contacted Walton and was told that i indeed have to wait for my phone call next week and only then can an ms nurse book me into a relapse clinic.

Does anyone know anythng about this new system? I feel like i have no one i can contact relating to MS. Granted it’s only a week, but a week before being able to discuss symptoms seems a long time. Yes i appreciate that there are only a coupe of nurse specialists and their time is very precious, but is this really good enough?

Any advice greatly appreciated.



hi glyn

just saw ur thread and saw u have no replies.

i cant answer re the centre u r talking about-i am in scotland.

‘is this really good enough’ i can answer-no, its not but the service we get re everything related to ms is so variable-just as ms itself is! that doesnt help you any-am aware of that. i do sincerely hope that someone can offer/give u the guidance/support that u need/want.

take care, ellie

ps my reply will have put ur post back to the front page!

No I don’t think it’s good enough. I’m not sure what the answer is though. Have you tried the neurologists secretary to see if you could speak to neurologist by phone, or get an urgent appointment? Maybe get a cancellation? I don’t live in your area either and don’t know the protocol. Good luck.

hi Glyn,

I’m under the Walton Centre too.

What you’ve decribed was new for me as well. When, back in December, I had some issues, I left a message and the MS nurse called me back.

I suppose that system changed around February. I had an appoitntment with the nurse scheduled for mid-Feb, but a week before they called me and said it had to be cancelled because of sickness.

I was trying to contact them for a couple of weeks, but nobody would answer.

Eventually, somebody answered and said it’s the advice line. To be honest, they offered me a telephone appointment as the only option. For me that was fine, because I had a few new symptoms to report and I had a neuro appointment booked anyway (although, I only know that, because I called the appointments department myself, there’s been still no letter - it seems to me they have some communication problems in Fazakerley).

But if you’re having a relapse, then it’s weird you need to wait so long.

Basically, I think is that ‘due to sickness’ there’s only one MS Nurse at the Walton now (Carolyn) and well, getting in touch with her isn’t easy. I don’t know for sure, though. Maybe calling your consultant’s secretary would help?

by the way, may I ask who is your neuro? (sheer curiosity)

Is it good enough? Certainly, it could be much, much better, but what I’ve experienced so far is that once you finally get there (to Walton), their service is really good. The shortage of MS nurses is something they can’t do much about, I’m afraid.

take care

Hi glyn,

I’m under the Walton centre too. The other week I started with what I thought was optic neuritis and a relapse (unfortunately correct on both counts). I got the same advice line, offer of telephone consultation and length of time-a week away. I declined, as like yourself, it was just too long to wait. I went to my go the next day who faxed a letter to Walton and I was seen in the relapse clinic the following Wednesday. In the meantime one of the ms nurses rang me to check I had got the message about the relapse clinic and explained that while the other nurse was off sick this was what they had to do. But once full staff numbers were back to normal things would return to usual mode.

I needed an eye scan to check for macular oedema as I’m on gilenya. Luckily got all clear for that. That was done before relapse clinic. Things seemed to happen quickly once the gp got involved but that could have been down to the nature of the problem, not sure??

Good luck to you, hope you get some answers soon. Suggest seeing your gp again and asking could they get more involved?

I agree with Alex, the staff at Walton are great. As for neurologists, mine is Dr pietkiewicz(?).

Best wishes, cathy

Thanks for all the advice.

I totally agree and i also think the Walton cente is great and everyone there is brilliant. I was more just confused regarding what route i am supposed to take (Which i think has been answered in the replies). As i say it was more confirmation that i had taken the correct route i needed as was feeling a bit lost. I understand the situation due to staff sickness and also appreciate how stretched Fiona and Carolyn must be.

Basically I think I just wanted to check if this was indeed down to the staff situation or if contact routes had changed, and therefore i was going the right/wrong way about it. The last thing i ever want to do is waste medical persons time - I know how precious it is.

I am also under Dr Pietkiewcz(?)

Again thanks for all the advice.

ps id just like to add / clarify - I was not having a go at the staff - more the system. All medical staff without exception are amazing.

hi again,

as I’ve eventually managed to contact the MS Nurse (Carolyn), she said that she would contact my neuro and probably I would have an appointment with my consultant booked regarding my symptoms (probably I’ll be prescribed something). Today, though, I got a letter saying: ‘Clinic: MS Specialist Nurse Adhoc Clinic’. Any idea what it may mean?


I havent had my phone call yet but i also received an appointment for the ‘Clinc: MS Spcialist Nurse Adhc Clnic’ through the post. The appointment isnt untill 3rd May.

Would the clinic be described as ‘ad hoc’ when it’s put on in response to a need for it? Like an extra one? I’m not sure sorry. Sorry to hear that you have to wait so long glyn, I hope you manage to cope ok in the meantime (without wanting to be patronising!). The staff are great as you say, but i do understand you must still be frustrated with the wait. Our neurologist- I’m only going to call him dr p from now on!

Hi everyone, this is the first time I have sent a post (to anyone) Following an MRI scan I have just been diagnosed with secondary progressive MS. my first neurologist 25 years ago refused to confirm I had MS at all, the consultant however at Salford Royal was very open and honest. I am still learning the ropes, is it only through the neurologist that MS nurses work or do they work with GPs? I apologize if this question seems very basic, but as I said I am very new to all this. Many thanks for any advice. Bill

I came under Dr P when he was at the Great Western Hospital, Swindon; he was a locum.
He was really responsible for me getting an FES

After more than three years he was replaced by someone from the Walton, and Dr P moved to the Walton.
Circumstances were such that the GWH had to recruit another MS consultant from outside the area.


Hello Bill Kempton

You are the first person I have come across who attends Salford Royal

We can compare notes.

Been attending for 16 years with RRMS.

The MS nurses work via the Neurologists and just send an update letter to the GP when you see them.

My MS nurse is a very good chap, really enthusiastic and so is my neurologist.

I rarely see my GP now.

Please keep in touch ( My real name is David )

Bertie (school nickname)