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MS Nurse

I dont get chance to get on here as often as i like as kids and work, but just needed to vent off about my MS Nurse. I am a nurse and love my job and if i make a patient smile or help them it makes me feel proud and that i have completed my task effectively. Was just wondering tho if anybody else has an unhelpful, lack of knowledge and unsupportive nurse as we do. Everytime you call her to help you get “i dont know” or “maybe” “what do you think”. All i want sometimes is to be able to ring her up and ask her some advice yet all i get is rubbish. I have even phoned up my neurologists secretary and asked him to call me as my nurse is useless. I have told him this, and obviously know he cant comment but he knows what she is like! I know i am not the only person who feels like this here as when i go to my local meeting they all keep saying they dont like her and i should have her job lol. I was also so excited yesterday about the news of the pill and when i spoke to my nurse she turned round to me and said " i dont watch the news"…err i thought nurses were supposed to be up to date on research etc, especially in their field of medicine!!!

Her response was also well it probably wont happen, so talk about put a downer on a person who actually cried whn i read it, as it seemed to be a glimmer of hope for me as i hate injecting myself! and when i saw my neurologist monday this week, he said that if the pill ever came out then i would go it. Grrrrrrrrrrrrrrr sorry to moan but just needed to see if its just our nurse that is like this.

xx

The frustration you must be feeling. Im like that when I see gp with a new symptom and there is no answer, yet Im experiencing something different be it nerve related or not.

Having an ms nurse who is unhelpful actually exhaserbates the problem. Not only are we having to deal with the unknown but having a nurse who knows less than we do, well she isnt actually doing her job properly.

Perhaps you should write down what you expect from her, and ask others who know her to do the same. Then maybe she may realise shes not fulfilling the role criteria and do something about it.

Thats why its good to share on here, its another outlet and because people have probably experienced what you are worried about can share and give good advice. You could say this site is better than any ms nurse because people who have been there before you know which direction to turn or might have solutions which have been tried and tested.

Take care,

bren

x

Aww hun I feel for you. MS nurses will be our main person we go to for support so they are meant to be helpful and at least know about things to do with the illness they supposed to be giving the support for.

Thankfully my MS nurse could not be nicer. I rang her one thursday about having a relapse. My neuro was on annual leave so she had to ring my GP and give them the go ahead to give me steroids. She then rang me back that evening to see if I had got them as she was going on holidays and wanted to make sure I was ok before she left.

The only problem I have is that I have been suffereing from aching arms and I asked her about it. She said she didn’t think it was anything to do with MS. She may be right BUT I don’t think she is and from posting on here I think others agree.

The problem we have with them and neuro’s is, no matter how many patients they have had, unless they have MS themselves they will NEVER understand.

I hope you find and better nurse as it is so important.

Lindsay x

Hi, well I have had several nurses over the years and tbh i have given up on them . They are all friendly enough. The first one used to insist I had fatigue even though I didn’t and she used to say things like “you’ll be less tired than you used to be” when I always said tiredness was not something I suffered from, so I didnt have much confidence in her for this. The second one had a poor kowledge of ms and was no help, and dithered when you asked her a question. The next one was off long term sick, although by this time I had given up on nurses. Currently we have 2, the part time one, I don’t know what she does but she doesn’t know much about ms, didn’t know what zanaflex was and the full time one, well she seems knowledgeable enough and friendly but doesn’t really help herself, I feel she always says see your gp, so I’d be as well going there in the first place. I’ve actually given up on them now, but maybe I’m being unfair to the current one! Cheryl:-)

Aww thanks guys, seems they all seem to be a bit daft although there does seem to be the odd nice one. Maybe it would benefit from having a nurse who has actually experienced it like myself, to actually understand how the patients are feeling. Trying to explain to someone who has NEVER experienced it, and probably think your mad is so difficult sometimes and it really doesnt help when they are totaly unhelpful and seem as tho they cant be arsed. So may try getting us all to say and then maybe she can understand why we refuse to see her anymore lol

xx

If you get a good one - they can be brilliant.
So I’ve been lucky. two nurses, first went on maternity leave so the last few times I have seen the second. Both are always interested, always helpful, and the two times I have needed steroids to held with a really bad relapse they have got things done really fast.

To be fair, I think it comes from the head of neurology - if the Head of Department is good then it is a fair bet that all his/her staff will be good.

One quick check could be this:
Do you get a copy of their report to your GP after each appointment? (That’s neuro and MS nurse both)
You should, it is in the NHS charter. If you don’t get one within say about 3 weeks, you could go to your GP and ask to see your records (that is free if you don’t leave it too long). Now you will know one or two things:
Was there a report.
What did it say.

This might help you to decide if you want to be referred somewhere else (always assuming this is a viable alternative).

Geoff