So today I was contacted by my MS clinic asking me to remove certain remarks that I have made in the past on this site regarding my treatment, and how I thought a consultant and specialist nurse at that time didnt really take on board my concerns.
When I made the comments I was going through a very bad patch with my MS and I didnt think I was being listened to or perhaps understood how my symptoms had changed and were effecting me.
Maybe my comments were a bit harsh but at no time did I give a consultants or nurses name, however it is now clearly obvious that a certain member on here decided to make it their business to report these comments back to the clinic.
To cut a long story short, a member of this site, who is also a patient of the same MS clinic that I attend has approached the clinic and reported my comments to them, giving my MSsociety site “name” and the comments made so that the clinic could take action !
What this member has gained from this is beyond me, maybe it’s to gain brownie points from the clinic or perhaps they feel that they can be teachers or in this case consultants pet, either way this member has made it almost impossible now for me to reach out to the clinic in the future !
I think I know who this member is, but as I wont break confidentialty rules I’ll keep it to myself, but thanks (not) for making my MS world just a bit more difficult than it already is.
Anyway, I will remove any comments I have made as the last thing I want to do is offend anyone, however it must be said that sometimes comments are made on here in the heat of the moment and when you are feeling pretty low, especially when frustrated by ongoing MS symptoms.
What is worrying though is that this site was contacted by my MS clinic after the member decided to make it their business to report my comments to the clinic, and then the clinic was freely given my full name by this site.
Surely all personel information such as real names ect is/should be kept confidential ?
I guess not on this site !
If my comments breached any site rules then I would of thought they would of been removed at that time by the sites moderators, so therefor if they havent breached any rules why did this site release my full name to my clinic ?
Anyway trust in this site has now almost disappeared, especially if a fellow MS sufferer and site member decides to run back and report your comments to your clinic.
I usually use my time at my MS clinic to get as much information across about myself, rather than talk about someone else !!!