I thought that i would share my first meeting with my MS nurse.
I had been lead to believe that these nurses are worth their weight in gold but i had more of a negative experience when i recently met mine. I felt as though i was a treated like a child and i was told to stop asking questions ahead of her order of delivery. Therefore i didn’t ask the questions that were most important to me; they were gone by the time i was allowed to ask them!
I was also told that it was in my notes that i ‘read’, what does that mean? Of course i ‘read’ i’ve just been told that i have a degenerative disease and i want to find out everything about it!! This was obviously a naughty thing to do! Bad new patient, how dare i! TBH, that just killed the whole meeting as all the time i was thinking that i was an idiot and what exactly did the neuro write about me and why was this so bad? I felt put down.
The whole hour was a waste of time as i learnt nothing and i left deflated as i had waited 10 weeks for the appointment and had expected this nurse to be my new God and saviour! I do understand that many new patients will go into the first meeting with no knowledge of MS and she would have been a fabulous help to them, but if my notes read that i was a ‘reader’ then perhaps she could have pitched her delivery at a higher level and allowed me to ask the pertinent questions which would have aided me better.
I also took her information on joining groups as very insulting to MSers as she told me that one group in particular was full of “disabled people” and i should avoid them. Yeah, perhaps disabled but full of information to aid me and my journey and probably full of wisdom and support for a newbie! I do get what she was meaning but it was the way she said it using air quotation marks that upset me the most. BTW i’ve got a fkg badge that says i’m bloody disabled!
Many more things happened that i wasn’t happy with and how they were conveyed.
My friends and family have advised me to complain or request a new nurse but i won’t as i’m going to join a group which has a MS nurse at the centre and can offer all the help needed for a well ‘read’ newbie!
Sorry for sounding so negative and unappreciative but it was a really bad experience and i now do not want to return for my next appointment.
(I have posted exactly the same post in an other forum but i would also love to hear your replies too).