That is so utterly out of order. Being asked if you wanted to have your treatment transferred to another service, it’s like being told, ‘we don’t want you as a patient anymore’! How is that appropriate behaviour for an NHS service?
Never mind taking seriously the comments made by one patient about another. And investigating.
I really do hope this particular forum member has read all the way through this thread and realised just what their actions have meant. Not only is their behaviour abhorrent to the majority of the other forum members. It has caused you real damage. You now have to transfer your MS care to another hospital.
Sue, I have spoken with the clinic since, in particular my specialist nurse, and in fairness he was very good about it all . For obvious reasons changing consultants/nurses or even clinics would be so stressful and I wouldn’t really want to anyway. My concerns now are that whoever started this could so easily do it again and I feel uncomfortable thinking that someone is watching my every word, especially as I do usually say what I feel.
I know that I am very easily identifiable - anyone who knows me in the ‘real world’ could easily know who I am in here. But I refuse to watch what I say and do as a result. It’s a bugger, that you didn’t have that choice. Also that someone has already reported something you said long ago so could do it again.
It’s a really good thing that you’ve spoken to your nurse and are ok to carry on with the service. Thankfully. I don’t know how I’d go about changing everything over to a new service. So it’s a really good thing that you’re able to continue.
But it would make me feel uncertain about what to say and what not to. I hope you’ll be able to just carry on as usual.
Wonder whether starting a Hotmail account and joining with that as well as keeping your current one would be allowed. The moderators will be able to advise. Sadly you won’t want to post anything about your sister. It’s SO wrong. Tippy x
It does grind me a bit because I’ve received very positive, kind and genuine comments about my sister, even though she’s a total stranger to everyone on here.
It also helps, well it helps me anyway, when I can ask for advice in regards to her MS on her behalf, if that makes sense, it’s like I’m doing something to try and help her situation.
I’m starting to talk nonsense now, but I know in my head what I mean
What your going through would stress me out.i would be even more stressed changing my username and looking over my shoulder at how and who I post and reply to.
It is sad that you are having to consider ‘changing your identity’ simply because of the actions of another;you shouldn’t have to but I can certainly see why you might want to! It frustrates me that despite you doing nothing wrong it is you that has to make the compromises. I hope the person that has done this now realises the very real problems and stress that they have caused and thinks twice before doing anything like this again.
Our forum is a confidential space - we rely on the incredible support from our members to keep our forum a safe, informative and welcoming community.
In following with our community guidelines - I would strongly recommend that you do not disclose any personal details at all within threads or PM’s and that your username should be unique and non-identifying in any way.
As mentioned previously in the thread, we (MS Society) have spoken with the author and feel that the concern that we passed on details has been resolved. We can confirm that we did not nor would we ever disclose any personal details, and as such I am now locking this thread.