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I cancelled appointment with nurse

May be I am over sensitive but my last 6 monthly meeting with my MS nurse I found quite stressful. She seemed to pooh pooh some things I said and doesn’t understand some of what I have experienced which I find a bit frustrating. I just wasn’t getting that much from the meetings and I don’t want to waste NHS money. She seems so busy anyway.

Stress does impact on my MS and I was feeling a bit stressed anticipating the meeting, so I cancelled it. I didn’t say why. I know I can phone her if I need some advice in the future.

Mmm, she should be phoning you to ask why you cancelled and check you are ok. Sounds like she`s in the wrong job to me!

pollx

Hi Lenney,

I find hospital appointments stressful too - even if whoever I’m seeing is nice, and there’s nothing especially concerning to discuss.

I’ve only met my MS nurse once - it was booked for me regarding urinary issues, about without discussing it with me first.

Although she was very nice, the issues were only very mild, and as expected, she found nothing wrong (no infection, and not retaining to any significant degree). But I got so anxious about the appointment, I found it totally counterproductive.

I passed on to the neuro (though I’m sure he already knew) that nothing of concern had been found, and he said: “Oh, that must have been reassuring for you!”, and I was honest, and said: "Well, no, as I find hospital appointments extremely stressful, don’t really want to have come to them “just for reassurance”.

I’m sorry to say, all it teaches me is to shut up about any problems I’m having - especially if minor - as I do not want a hospital appointment that causes more distress than the problem! Basically, I want to be left alone unless it’s serious (and I hope I would know what “serious” is, and when to speak up), otherwise, just let me get on with it.

Although my neuro and MS nurse are both nice (though I generally do not get a lot out of appointments), I have not hit it off with the whole team. I was referred to physio - again, without discussing it with me first, and agreeing it was what I wanted. I went along to “show willing”, and to avoid getting a black mark against my name as “uncooperative”, but I really didn’t take to her at all, and will certainly not be returning in future (if I do need physio, I shall go private, with someone I got on with much better).

We got off to a bad start, because, to put her in the picture, I ran through the medications that help (with the pain), and she said: “Are you really sure, or do you just think they do?”

Well, s*d that! For a start, I think it was very judgmental, as she obviously didn’t approve of medication at all (even though it was all properly OKed by GP & neuro) - she obviously though her way was better, and patients shouldn’t be taking stuff.

Well, that’s all very well, but exercise alone can’t fix everything, and sometimes you reach the point you know enough’s enough, and you need some help from chemistry to maintain a decent quality of life!

The other thing is it’s a completely dumb question whether medicine works, or you only think it does. How would I tell the difference? From my point of view, thinking something works means it does. The only thing that matters is whether I get benefit. If I do, I don’t really care if it’s because it’s really doing something, or my brain’s just deceiving me it does (placebo effect). IF I get benefit, I’m not going to tell Mrs. bolshy physio woman: “You’re right! How silly of me! I realise I was just imagining it!” I do not think my brain is deluding me into believing some medicines help, when they really don’t. If I was that suggestible, wouldn’t I find ALL medicines helped (which they don’t), and not just some of them? But finally, IF my brain is kidding me, I don’t really care. I’m only interested in the result. Take a pill, feel better - who cares how it really does it? IF my brain’s deceiving me, I’m more than happy to be deceived, as long as the net result is feeling better.

But anyway, sorry for the long rant.

The short answer is if you’re not on the right wavelength with someone, and you find appointments stressful more than beneficial, you don’t have to have them. I’ve never had routine MS nurse appointments and wouldn’t want them. As you say, you know where the number is if there’s a problem.

I certainly wouldn’t waste my time getting stressed about appointments you are not finding helpful, and have no real need for. If it’s not useful, don’t go!

I’m sure you won’t be offending her, and you’ll be leaving the slot open for someone who really does need/want it more than you. We’re always being told how the MS nurses are run ragged, and there aren’t enough to go round. So if you don’t need or want the appointment, do the decent thing, and let it go to someone who does. I’m sure she won’t be out of a job, because one patient cancelled.

Tina

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Hiya

I have not had appt with my ms nurse for 9 yrs. We don’t like each other! I see her at neuro appts and we are civil but I think she is useless and she probably thinks I am a ‘whatever’ but none of us looses sleep over it (I certainly don’t!)

Ellie

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Sounds like you did the right thing. If you don’t like someone, then it would be more than it’s worth to see them. Recently I had a nurse from Coloplast come to see me re the Peristeen system. I didn’t much like her and really didn’t fancy seeing her again, or want to get future advice about such a personal thing from her. So I explained to the company that I was going to have future Peristeen advice and assistance from another company (the one that I already get my catheters from) as I thought they provided a better service. I was really quite honest with them about the reason I didn’t want to see that person. I kind of think it’s important. (I gave up on Peristeen anyway!)

In my area, originally I had 6 monthly appointments with the general neurology nurses, I later swapped over to having home appointments with the specialist MS nurse. If I’d not liked her or wanted to see her, I could have swapped back to the very competent Neuro nurses. I was lucky and she’s an excellent MS nurse. There are times when there’s really not much to say, but at other times she’s really quite useful.

Could you perhaps swap to seeing someone else when you need them rather than have regular sessions that make you stressed. I don’t think you should worry overmuch about using NHS resources, they are there for us to use or not use as we require.

Sue

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Thanks for the replies. I think things wind me up easily. Hope you are all having a nice weekend. xx

Hi Lenny,

Before I moved my MS nurse was always at the end of the phone and would make a home visit if needed, since moving a a hundred miles away I have seen my MS nurse twice in two years and she was as useless as a lump of lard, so I certainly won’t ask her advice again. I guess it depends on which part of the country you live whether you get a good or bad nurse.

Janet

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