Forum

Can you have more than one MS nurse team?

Bit of an odd question, but the option of having more than one MS nurse team came up recently in a questionnaire I was filling out, and it surprised me!

I get seen at a big, central hospital, but I’m aware that there are MS nurse teams much closer to me. The hospital I’m seen at is technically very good (especially in terms of neurologists), but their nurse team is badly understaffed, near impossible to get through to, and they never have any time for anything other than immediate medical care. The nurse service is really a relapse and DMT only service; I’ve never been given any option to access any other form of support or information through them.

The other nurse team that’s closer to me has a good local reputation for being available, prompt to help if you need to check how to manage any symptoms, and happy to provide emotional/practical advice. However, I desperately don’t want to lose the neurology consultant I have at my current hospital - they are very good and I respect them.

Does anyone on here have an arrangement where they are able to be seen by their local MS team as well as receiving care at a bigger hospital (and if so, how)? Or is this just a fantasy caused by a poorly worded survey?

Mx

Hi M

If it’s a fantasy then I’m living in it !! I have MS nurses as part of the team at the hospital where I see my Neuro Consult and have Tysabri infusions and I also have an MS nurse who is more community based and therefore more concerned with day to day care and practicalities. I consider myself very fortunate !!

It would certainly be unusual - the MS nurse is professionally accountable to the Consultant Neurologist who is formally responsible for your care and works as part of her/his team. So it would be a bit odd to be seen by an MS nurse who was accountable to another Consultant Neurologist who knew nothing about you. So be prepared for some resistance; I suspect that you will have to put up with the MS nurse team that, however unsatisfactory, comes under your preferred consultant. But never say never - there’s no harm in asking, and sometimes medics can be surprisingly creative in their problem-solving! Good luck.

Alison

where i live there is a neurologist who is a general neuro and is community based.

at this base there are ms nurses too.

so i can see a nurse either at the community base or at the hospital where my ms specialist neuro is.

i’m surprised that everywhere else doesn’t have this.

both ms nurses liaise with the ms specialist neuro.

Hi M,

i was also very fortunate as used to have 2 sets of MS nurses. One set at busy teaching hospital who I might see after seeing neurologist. Then like Mrs H more a community MS nurse team of 2. They would visit me at home although still mobile. Also I could phone them any sensible time. If not available I would leave a message and they would usually get back to me within 24 hours. Also a centre where you could go for massage, reflexology and the like. It was an excellent set up.

Min xx

I;d be bloody lucky to get one MS nurse. The last left a year ago has still has not been replaced.

1 Like

When I was still seeing an MS specialist neuro and having DMDs, thee were MS nurses who dealt with all the DMD work and were absolutely brilliant, even phoning me at home on a Friday night (can’t remember what about now!)

But I’ve also got and have had for years, a community based MS nurse. She’s brilliant, used to be a bowel and bladder nurse too so covers all the bases. She even called in one day just to check up on me because I’d sounded a bit down on the phone!

Sue

This thread has been really interesting and informative for me - I had no idea that such things as community-based MS nurses existed in some parts of the country. What a great idea! Alison

1 Like

The community MS nurses in my area communicate and cover for each other. They are all part of the general neurological services so while they don’t have responsibility for just one specific neurologists patients, they are copied in the letters etc. It all works pretty well.

I cant see why that kind of arrangement shouldn’t be available to us all. Oh yeah, that postcode lottery thing. Why the blithering hell don’t we all get treated the same? Oh yeah, local finances, etc, etc. Ballcocks.

Great.

Sue

I gave up going to the Hospital neuro about 2 years ago now, as I was signed off to my GP, but can go back if I need too.

It’s such a long journey - I can’t be bothered.

To be honest, I can’t see much point in seeing a neuro beyond diagnosis of the different stages. If these doctors could

cure you it would be different.

So, I see a community based MS Nurse, and have access to the Community Rehab Team who visit me at home.

This service include physio, OT, etc.,. Just a phone call away. I’m much happier with this.

I don’t need someone to hold my hand.