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MIFFED!!!!!!

Hi Everyone. Ive just had my post (not very early in rural Wales!!) & I have again been referred to the continence clinic at my local hospital. Why miffed? They only discharged me end of March!! My gripe is that Im sure MS nurses are on commission to refer you! I went to MS clinic three weeks ago because of pains in my legs & vertigo, the nurse always asks me about my toilet “habits” before she asks about anything else! I apprieciate the concern but this is the fourth time in 12 months!!! I am fortunate to be managing at the mo, I have had a toilet built downstairs at home, & I have insisted that if I need help I will ask for it!!! I feel a bit like the MS team are telling me I should have problems!!! The continence nurse is lovely by the way, but I dont want to live in the clinic!! Surely, if Im managing they shouldnt go over your head!!! Im prob being selfish, but why dont they listen!!! Im going to phone now & cancel appointment so that someone who needs it can have it. Wait til I go to the MS clinic, 1 question about peeing & I swear I,ll clock her!!! Tracey xx

Ha ha!!! welsh for a smack!!! Bloody woman! cant believe shes done it to me again! I dont want to describe & measure pee, I had enough of that in uni! It must be a form of MS nurse turrets syndrome, “nurse my legs are hurting” “yes but can you pee?”!!! I give up!!! Tracey xx

I’m a Londoner born and bred, and we use the expression “to clock someone” as well, so it’s definitely not exclusive to Wales!

As for your nurse - well, the more I hear about (some) MS nurses, the more I think it’s no loss that I’ve never had one.

I guess somewhere in the manual, there must be a section that says whenever the patient reports new symptoms, suspect a UTI.

Were any problems identified last time you were referred, incidentally? If the continence nurse agreed with you that there isn’t an issue that needs fixing, it does seem silly to go back, if your only change is leg pains!

You’re right, of course, that you do not have to go to anything you’re referred to, so if you’re confident you’re being referred for a “non-issue”, I think it’s quite sensible to turn it down.

I’m like you; the fewer doctor/clinic/hospital appointments I have, the better I like it. I’m not in the business of going, for something I’m not really finding an issue.

Tina

This just confirms my suspicions about ms nurses!

I was diagnosed 6 years ago, and of the six or seven calls to the ms nurses I have made, only three have been responded to, and the answer every time, “how’s your bladder, you might have an infection, take a sample to you gp and ask to be referred to the continence team.” without even waiting for me to say my bladder is fine thank you! My calls were about leg pain, weakness and headaches!!

I resolved never to bother an ms nurse again.

xx

Hi, I’m Scottish and I also use that expression “to clock someone”, so not specific to Wales then Tracey, or for that matter to London either Tina. Back to the issue in hand. Funny you should ask if they are on commission. The current ms nurse is nice and friendly but I’m not a fan of the ms nurses myself. This is because the first one back in 1996, when betaferon was new and I was on it seemed very keen on “promoting” betaferon. She made up symptoms I had never had and had said I had never had and she then said to me that they would be better now that I was on betaferon. Her favourite was “you’ll be less tired than you used to be?” . I know a lot of people have fatigue but I didn’t and told her so, on numerous occasions but she insisted that I would be less tired now I was on betaferon. It seemed to me that she was doing everything to promote betaferon and I didn’t like her “inventing” a symptom that I repeatedly said I didn’t have. After a while the neuro said I was doing fine on betaferon and if everything was ok just to see the nurse yearly. By this time its a new nurse and she insisted that I had to be seen every six months. It was like she was trying to create work for herself to ensure she had enough patients to stay in a job. I eventually said to her that neuro had said yearly and I would phone his secretary to check, then she backed down. Even the new and current nurse said six monthly and I again said I would check with neuroscience secretary then she backed down. She knows now I won’t go in every six months. But the part time nurse who Is sometimes with her still says six months but I just ignore her and go yearly. Sorry, that turned into a bit of a rant! Maybe I should clock her one! Tracey, just you cancel that appointment and stick to your guns! Cheryl:-)

Cheers everyone! Seems to me we all have differculties in being heard!! I apprieciate all their help when they are trying to address an issue Ive raised, but for crying out loud when they just carry on regardless it is taking the pee!!! Literally!!! Im sure my MS nurse asks everyone the same question, just worries me that its because she doesnt have the answers to the problems we confront her with! Well I shall ask on here in future, somethings are sacred (for now at least!) like my peeing habits!!! Thanks for the replies, feel much calmer now!!! Tracey xx