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).
Hi Paula, I’m really sorry to learn that you had a bad experience with your first ms nurse appt. I expect he / she had an agenda to get through, never the less it was a pity she did not let you ask your questions when you wanted to. I remember I had about 10 questions I wanted to ask at my first ms nurse appt. A tip; write them down. I did so and I saved them up to the end. I knew the questions to ask because I had read about MS. Being well informed and proactive regards latest treatments is a good thing - they should not put you down because of it. I hope you keep your next appt and I hope it goes better for you. My ms nurses are very good. You may need yours one day when you are not feeling so well and then, may be , they will prove their worth. Roger
Sorry to read about your experience with the MS specialist nurse. The one that I see is just the opposite, she really is worth more than her weight in gold.
I have had appointments with her every six months, since I was diagnosed in 2003, nothing is to much trouble for her. At her request my wife attends the appointments with me, so that the she can ensure that my wife is also looking after her own health.
My MS nurse, ensures that my “GP” is kept up to date with my condition, arranged physiotherapy, put the wheels in motion to get me “FES”, arranged a driving assessment and car adaptation, as my condition progressed, advised the “DVLA” on my suitability to remain driving, not forgetting of course her experience and expertise in the treatments and medication available for “MS”.
As I said above, nothing is to much trouble, and I mean nothing. She is a true lifeline.
Hope you can get something sorted in the near future.
I. El. (Eng). (Rtd).
I know its going to be a bad day when I get out of bed and miss the floor, today is such a day.
What a rotten experience. If all the MS nurse is prepared to do is to run through a set script, they might as well hire the speaking clock to do the job and save a bit of money. It’s a clumsy, stupid and wasteful way for them to do business, isn’t it?
Never mind. You have other information resources at your disposal. But it is a pity that a source of support that should be so helpful is so rubbish.
I don’t have an MS nurse, and have always wondered what I am missing. In the light of your experience, “not a lot”, it would seem.
I don’t really know why I haven’t got one. It might be something to do with transferring from BUPA. Although I’ve kept the same neuro, I wonder if a few things that should have happened got lost.
Or maybe it’s because I turned down the chance of a “newly diagnosed” course. I didn’t feel the need of a bloody course. Especially as I work full time, and don’t drive, so it was hardly convenient. But I sometimes wonder whether it was the mechanism for assigning an MS nurse, and that as I didn’t go, I was simply assumed not to want one.
I’ve often wondered whether I should be pushing for one. But as I don’t have a specific question or issue, I’m not really sure what I’d be requesting help with.
Certainly if it’s someone who’s going to react like yours, if they find I’ve been audacious enough to research my condition myself, I could do without it.
I didn’t have a follow-up appointment (with another neuro, not an MS nurse) for over four months after being formally diagnosed. And almost a year after being told informally.
Did they really think I’d turn up knowing nothing, and waiting for somebody to tell me? It would be abnormal not to have shown a bit of curiosity, in a year, wouldn’t it?
I’m amazed any doctor or nurse, these days, expects patients with a serious condition not to have done a little bit of homework.
Tina, I think one of the problems here is the risks of making any kind of assumption about what patients will know or not know (or, indeed, want to know or not want to know.)
BlueToffee’s experience speaks of the hazards of the MS nurse assuming that the patient knows nothing (and of then taking such a rigid approach that he/she is unable to adapt to the needs of a different sort of patient.) A less clued-up patient might have found this approach informative and helpful, and might have been intimidated by any assumption that he/she should have done his/her homework, and somehow feel like a failure for not having done so. Such a patient might have gone away from BlueToffee’s consultation feeling informed and supported by an approach that left Paula hopping mad, as it would have left you or me.
I think the key here is for the clinician to be observant of where the individual patient is coming from, and adaptable enough to take a steer from the patient and play things accordingly. It’s just about treating us as individuals, I think. You need a certain calibre of clinician to do this, though. We are lucky in this area - our MS nurses are just wonderful. As usual, it’s down to luck who you get, I suppose.
Paula, it sounds like you and I share an MS nurse!
Mine is just awful, she seems to work from a script and if I mention something, for example I said I was feeling depressed, she asks a question to confirm this such as ‘are you feeling weepy?’ and then ticks a box in her notes…she did absolutely nothing about my mood, she did not refer me to for the counselling she promised or to the expert patients programme. None of her promised referrals have materialised. Her manner is patronising as if talking to a child.
I would love to have one of the amazing MS nurses that some other people have; asking for another one would not be possible as there is no other one in my area. My only right of redress is to make a complaint, but that is not going to help my situation, in fact it would only make it worse as she would know I had complained about her!
I wish there was some solution to this situation for all of us unlucky enough to have ended up with a ‘chocolate teapot’ as I call her.
If it’s any help, I don’t really use my MS nurse that much - maybe because I “read” (god forbid!!!) too. I do phone her when I need something to do with meds and keep leaving messages until she gets back to me. When we do talk it’s often me saying things like, “I’m thinking of upping my dose of X. What do you think?” and her saying, “Increase the dose slowly” and then I phone my GP and say “my MS nurse recommends…” and I get what I need. All very Machievallian, but needs must! I also arrange physio & anything else I need through my GP - easier for everyone, but that may be different depending on what the set up is where you are.
Perhaps your nurse will prove more useful than this first experience suggests though? Why not phone her about the missed questions?
I guess I should be shocked at your experience but I’m not - because others have had the same thing happen to them!
Thankfully I have a nurse that is the complete reverse! She’s wonderful and definitely worth her weight in gold.
I don’t see anything wrong in reading up about MS at all. Providing you’re reading stuff that comes from an official website/source etc because there is an awful load of rubbish on the internet…there are without doubt a lot of bloodsuckers out there too that will try anything to make a fast buck out of such things!
Don’t let your experience put you off - I think it’s great that you intend on going to a local group and as you say you’ll have access to the ms nurse there.
Sounds to me that maybe your nurse is a newbie? Following everything stage by stage?
Karen suggested calling your nurse with the qusetions that you wanted to ask, so why not do that, or email her. After all she’s there to help you and open doors for you with regards to information, medication and services that you might not otherwise know about.
There are good and bad in all professions. One nurse at our GP surgery is a little horror and in my view unprofessional to boot. Others are very good, it is luck of the draw.
However specialist nurses are highly paid and I think that they should be deliverying value for money. So I would ask for an appt. with another nurse. If nothing else why should they be allowed to get away with such poor performance?
I have an MS nurse or at least, I’ve got someone I can contact anyway. They wanted to set up appointments too frequently for me! I work full time (as a teacher) and I felt I didn’t need as much attention! I can’t say I’ve got complaints about them - the last one I saw suggested I joined a group for support as I was finding things hard (acceptance & all that) but I got myself sort of ‘signed off’ or at least, got them to agree to me contacting them if I needed them! I can’t be doing with all that - I don’t find it productive! I need to get on with things & figure it out for myself. My doctor has been good - got me sorted with a crutch (on recommendation of Astley Ainslie) and sorted me bowel-wise. Very supportive. I too have been a reader and freely admit it! No one has said anything negative about that - quite normal if you ask me. Hope you get what you want since we are all different!
I’m glad that some people have had excellent dealings witht their nurses and have a great relationship with them either in person or through email and telephone messages. I hope that i can move on from this and hopefully by February i will have simmered down enough to use her wealth of knowledge and powers to my advantage.
I actually thought that i was me that was to blame as i had built her up soooo much before the meeting and i had expected too much from her. Perhaps we didn’t gel properly even though the chat was flowing (following the proper order of delivery though), who knows.
Thanks again for reassuring me that this isn’t the normal feelings to have after a first appt and good luck to the rest of you who have had a less than positive experience too.
I am one of those who has a good specialist nurse, who is helpful and who I appreciate. One thing I would say to you is, don’t forget you are the ‘customer’ - it is people like us who pay or have paid our taxes so that these services exist. I hope you approach the next meeting in a positive and assertive manner - maybe you should say at the outset that you thought her approach at your first appointment wasn’t helpful. It might also be useful to understand her point of view - that old Stephen Covey lesson: ‘seek first to understand, then to be understood’