Confidentiality Within This Site ??

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 !!!

I completely agree with everything you said it would appear that on this site as with many others the operators are leaned on by powers above to release information about members without members knowledge such a shame it’s not what it says on the tin the member you talk off as always will get thier fingers burned one day.

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Most disappointing thing for me is the fact it’s another member who takes it upon themselves to “inform” the MS clinic, like a child running to the teacher !


you’re a bigger person than the sneak.

have you asked the moderator’s their opinion?

do you really expect to have less support from your consultant and nurse?

what would they have thought if you’d contacted PALS?

it’s a flipping right pickle!

hope you can overcome this.

carole x

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It’s all a little bit like the school playground, maybe they are getting poor service and they think getting a few brownie points will get them looked after a little better

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Wow Jactac. I’m sure you can deduce the sneak by process of elimination. It makes me want to pull out of the forum…

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Bloody hell jactac. How f’ing annoying. And as you say, it could make things a tad difficult with your medical care.

I am sorry that this has happened to you.


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Hi jactac what an awful thing to happen especially as you have been under so much stress with your sister. I, and I am sure many others thought this was a safe place to express our feelings. I hope your sister is making progress. Take care Sue x

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I’m pretty confident I know who the member is, purely by remembering feedback from my posts and looking back at previous posts.

It come as a bit of a shock when the clinic rang me earlier, especially when the lady explained how they had been informed by a patient and member of this site.

Anyway this person has to live with what they’ve done.

As I’ve already said, sometimes you feel on your own with this bloody MS, and when things are really getting you down you tend to blow off a bit of steam in the direction of whoever is in your way, at that particular few months I felt like I wasn’t being listened to by my MS clinic, hence the outburst.

Frustration I guess got the better of me.

Sometimes a forum such as this is the only place you feel you can let it out without offending anyone, simply because we are all going through the same thing, unfortunately it now seems as though letting your feelings known may not be such a good idea, on here anyway.

Even if this member really did have the urge of self gratification to run off and “tell” on me, I still find it shocking that a forum as big as this would so easily give out personal information.

In fact, an open (for all to see) explanation from the moderators would be nice, perhaps, but I doubt it so very much, even our fellow member might like to explain why they felt the need to do what they did.

I assume you’ve complained to the moderators / Admin about what’s happened? Whatever happened to ‘this is a safe space’? And data protection?

I still can’t get my head round how your clinic approached this site and were given your name!!! Words fail me really. The more I think about it, the more awful it becomes.

Sue. Or maybe I’ll just start signing myself § or Duckface. And perhaps start posting anonymously! Just imagine how confusing that’s going to become? Are you Anon #1, or Anon #4?




Even if this member really did have the urge of self gratification to run off and “tell” on me, I still find it shocking that a forum as big as this would so easily give out personal information. [/quote]

maybe they were legally threatened? either way its a horrible situation (and thats an understatement)

What on earth has gone on? Appreciate that the moderators are volunteers and this forum would be a very different place without them and may not even exist at all but please in the official community guidelines it quite rightly states very carefully about confidentiality etc. If my real name was ever given to anyone without my express permission I would be truly distraught and stressed. As Sssue said we’ll all start being ‘Anonymous’.

Jactac, you deserve a massive apology and I hope whoever the tale-teller is at least sends you a private message in that vein.

Tippy x

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Wow! The beauty of this is it is a ‘safe place’… that when you are down or peed off ot just feeling like ‘the world’ doesn’t ‘get you and what you are going through’ you can just have a rant,.get it off your chest and offload to people who ‘get it’! …Well at least I thought it was like that! I can only imagine that you feel like you have been stabbed in the back. We are supposed to be here to support each other as we all know ‘how it feels’ Yes we won’t always agree with everything everyone says but what happened to solidarity?

I am so sorry that you have been treated like this,it is wrong on so many levels. I hope that your care and treatment by your medical professionals is not compromised because of this and I hope that those involved have the ‘balls’ to speak to you privately and explain why they have done what they have done. Perhaps they have their reasons but when people sneak off to ‘tell tales’ in such an underhanded manner it is very difficult to perceive anything other than mischief to be their motive!

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what the h*** !!! what a truly awful sneaky thing to do, hope they are proud of themselves whoever it is and if you are reading this well shame on you.

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Thank you all for your support.

Its 4.40 am and I haven’t slept a wink.

I’m going to ring both the clinic and the MSsociety today and try to find out how and why my personal details were freely given out. In my opinion this site had 2 options when the clinic approached them and raised concerns about my comments.

  1. The MSsociety could of, should of looked at the particular comments and if they broke any site rules removed them, but at he same time still withholding my personal information and letting me know why they had removed the comments.

  2. Again when contacted by the clinic and if rules had been broken this site could of contacted me and given me the option to remove any comments that might of offended, once again though still withholding my personal information.

However, this site took the third option of freely giving out my personal information to the clinic for them to contact me direct, which at the very least has put a strain on our relationship and possible further treatment.

This site didn’t even have the decency to inform me that they had actually been approached and given out my information !

What also needs to be considered is that the comments were made almost a year ago and have never been an issue with the site, as they would of been removed by now, so why this member has decided to bring them to the attention of the clinic now is strange at the least, but I do recall a bit of feedback from this particular member who stated they also attend the same clinic, thought it and all the staff were great, knew the person I commented on, even though I did not give an actual name in my comments, and basically disagreed with my comments, which is/was fine by me as it was my experience I commented on, nobody else’s.

From what I can gather the MSsociety is broken down into regional groups, and many of these groups have direct links to local MS clinics, I’m guessing the MS clinic contacted the Welsh region of the MSsociety ?

Maybe (just a thought), this member has links to the MSsociety or some sort of local MS club which is linked within the MSsociety and to my local MS clinic and that’s how my personal information was leaked out ?

I’m not on a witch hunt, but I will be looking into whether any data protection or confidentiality rules have been broken.

Most members would of probably already read what I wrote, it was NOT incriminating or particularly nasty, it was just how I felt at that time, which in my opinion was that I didnt think I was being listened to by the clinic or fully understood when explaining my ongoing symptoms, it was so frustrating.

I guess we’ve all felt like this at some point.

But obviously even now many many months later when I’ve actually “cooled off” this other member has decided to make it their business to open up a can of worms !

I am both shocked and saddened at what has happened.

Sending hugs x

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Just come off the phone to MSsociety, spoke to a nice gentleman who was very surprised and shocked that personal information had been passed over to my MS clinic, he has raised an urgent investigation and will get back to me ASAP. Also rang my MS clinic and left a message asking them to contact me.


Hello Jactac,

Our admin Oliver would normally get back to you, but he is out of the office at the moment and I’m covering for him.

We’re very sorry to hear about your experiences and any distress caused on our forum. We have a strict confidentiality policy and we do take this very seriously and we’re investigating this internally.

If you send me a private message with more details then I’ll look into this asap.

Again, we’re sorry to hear about this. We’d like our forum to be a safe, supportive and friendly environment and want our members to feel comfortable.

Jenny - Admin

Hi Jenny, I believe you just rang me and I fully explained what has happened, look forward to hearing from you as soon as you’ve completed your investigation. Thanks.

Hi jactac,

I am an infrequent commenter on this site but I feel compelled to so becase of the horrid way you hae been treated by a fellow member of this website - as if you haven’t got enough on your plate already!!! I have no clue as to why they would be so spiteful as to do this, that’s for them to live with, but somehow I dont’ think a site as well regarded and valued by users as this one would stoop to the same level; might you have unintentionaly given away some small snippet of personal info that allowed the member to connect you to your online name? It might be something so insignificant you wouldn’t normally think twice about sharing, but these days every little bit of info can be seized upon and manipulated. We live in dangerousy open times!

Once again I’m so sorry whats’ happened to you; the person concerned must have no conscience whatsoever!

Take Care,


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