Confidentiality Within This Site ??

Everyday living
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It will be interesting to see the outcome of this. Jactac, thank you for posting this, it is important to get to the bottom of.

i really hope the stress is not affecting you too badly.

So glad you posted rather than ‘hideing’. I have always assumed ms nurses read this site to gain insight. if it turns out your full name was given out by admin, it sounds like some data protection re training is needed.

Hopefuly your ms nurse will read this thread and find a way to re build your trust. You really don’t need a barrier between you & your team, as their role is to ensure they support you. (I think/belive/hope)

all the very best, stay strong & keep sharing as we all need to know how this pans out.

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Ok, I do have some news but my battery is going on my phone with all the ringing around I’ve been doing, and I’m in work at the moment so I’ll add a post later on. Thanks.

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Ok, So after doing a bit of Sherlock Holmes snooping I’ve worked out what has been going on. I’ve spoken to the MSsociety a couple of times today and they’ve also rang me back trying to solve whats gone on. They have reassured me that under no circumstances would personal details be given out, not even to the MS clinic, and were taking this very very seriously. So after speaking to the MSsociety I then rang the MS clinic itself and spoke to my specialist nurse , it was explained to me that a patient and indeed a member from this site had approached the clinic pointing out my posts, new and old, so the clinic contacted the MSsociety to express there concern that comments had been made, however at no time did the clinic ask for my personal details or were they offered them. So how did the MS clinic find out my details ? Well the answer is simple. Lately I’ve been posting about my sisters struggle with her MS relapse, who attends the same clinic as myself and has the same consultant and specialist nurse, so by this other member pointing out my posts to the clinic all they needed to do was look at my username on here, link all the posts and basically see that myself and sister are the only related MS patients in the clinic. Sadly though the fact still remains that a fellow member from this site felt the need to raise my posts/comments with the clinic, which undoubtedly had put myself and possibly my sister in a very difficult situation. On a positive note, you can all now feel safe in the knowledge that your personal details are not being passed around between this site and your clinic. However, this does go to show that if someone really wants to stir things up it is so very very easy to do, and having a fellow member and MS sufferer do this actually makes me feel sick. Thank you all for your support and kind comments. * Well, all of you bar the one !

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Hi Jactac This is a lovely and reliable web forum, and I didn’t think for one moment they would share your personal details with the clinic. I did post a comment earlier on today about the issue, but it hasn’t appeared on this post. Its really tragic that you cant share details of the things that distress you most in the heat of the moment because someone has decided to position themselves as the website’s thought police. I hope that all your ‘detectorist’ work has put your mind a little more at ease than it was earlier today; seeing your post, when you couldn’t sleep, was a heart breaking read. All the very best both for you, and for your sister, Bx

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I am so glad this wasn’t a data protection breach by this site as that would be a serious problem for every user i would imagine?

I often post and am well aware that what i post sometimes would/could identify me to anyone that knew me well,it crosses my mind but i don’t tend to worry too much about this,perhaps i should be more careful.

My wife has a home visit to meet her Ms nurse for first time (after her diagnosis in march) early next week, Don’t really know what to expect from this or what questions we should be asking(other than when she can start DMD and what choices) but hard to imagine having time to gossip about other people!

What a Snake!

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I am sorry that you have had such an upsetting time of it, jactac, particularly when you have such big family worries on your plate. Now that at least the the concern about site confidentiality has been cleared up, I hope that you can sleep much better tonight. I wish that life was being kinder to you and your family.

Alison

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To the sneak who "told tales, you know who you are. Just keep looking over your shoulder, because Karma never loses an address and will come calling to your door. Shame on you.

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Well maybe I see things a little different but I feel a public apology to the Society for jumping to conclusions might be in order. And might whoever reported the comments have simply intended to draw attention to a failing so that they could reflect on it and learn from it rather than being to spite?

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Poppy,

While I in no way condone this person’s actions, I am not sure that wishing for things to get worse for a person with MS is an altogether appropriate response to what’s happened. Shame on them,yes absolutely.Hoping they are visited by some unfortunate event, when they already have the same disease as us,is something else again,and defeats the point of this Web forum. After all,we do only have one side of the story,however dreadul the consequences of their actions may be.

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A public apology “Bob” !

For what exactly ?

I never accused this site of passing out information, I simply explained EXACTLY what I was told in the first telephone call I received from my MS clinic, and that was that they had contacted the MSsociety with their concerns after being told about certain posts I had made and when they contacted the MSsociety they were “given” my personal details.

Now whether the person who rang me was confused or they way it came across got confused I will never know, but the real fact of all this remains, a person from this site started this stinking ball rolling !

It wasn’t until I spent all day yesterday ringing around both the MS clinic and MSsociety trying to get to the bottom of this that I finally found out how the clinic had worked out my real name.

I quote my MS specialist nurse " yes we were informed of your particular comments, but if we had not been told of the link between you and your sister we wouldn’t of known who you was".

So “Bob”, that still clearly says that a person from this site had not only gone out of their way to inform the MS clinic about certain specifics that I mentioned in my posts, which incidentally only commented on how I felt that I was being treated at that time, but they also pointed out that I had a sister with MS within the same clinic, hence making it a simple task for me to be identified by my clinic.

I was almost quoted word for word in the initial call from the clinic what I had said.

Remember now “Bob” only certain words were quoted back to me from my posts, only the ones that had been pointed out to the clinic, and it was pointed out that I had a sister in the same clinic.

So firstly this person guides the clinic to my posts and then goes a step further by pointing out certain comments within those posts and that they are treating my sister !

WOW, is that an agenda or what ?

At no point in that call from the clinic was I asked if I was concerned about my treatment or if I thought the clinic had “failed” me, as you so elegantly put it !

No “Bob”, that initial call was made only to tell me “a patient and member of the MSsociety had approached them and informed them of my comments regarding a consultant and nurse”, and they wanted them removed !

NOT ONCE DID I JUMP TO CONCLUSIONS, I WAS MERELY GOING ON WHAT I WAS BEING TOLD IN THAT VERY FIRST CALL FROM MY CLINIC.

I think your in the very small minority and actually missing the whole point, “Bob” !

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It would so nice, even in a PM if that person could explain why they started this.

Maybe, just maybe it was unintentional remarks that opened up this can of worms ?

But I feel that without an explanation, guiding the clinic to my posts and then pointing out specific comments makes me think their intentions in “reporting” this were certainly not to benefit me, or to “draw attention to a failing”, which has been suggested !

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One last point on this.

I spoke yesterday to the MSsociety care line who confirmed that even though I made comments, they did not break any forum rules as no names were mentioned or swear words used.

In fact more to the point, I was told that this forum should be a place that you feel free, comfortable and more importantly safe to express your feelings, as long as you stay within forum rules.

It was also said that it’s quiet a concern that a forum member would actually report comments or posts to a clinic, as this then could put a strain on the relationship between the clinic and patient.

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Hi Betti,

I don’t think Poppy wishes any ill fate on anyone, especially one with MS, I just feel it’s Poppys way of saying, “what if someone did this to you” ?

I think sometimes it can be difficult to put into actual words what you are actually thinking.

It’s like sending a txt, when you read it back to yourself you think “mmm that don’t read very well”, but in reality no malice was intended when you sent it.

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Thank you jactac for updating, the concern that this forum would give out details was real, sharing that the worrie has been resolved is great & from me, thank you.

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I’m sorry, Poppy; I didn’t realise that length of membership precluded commenting. I shan’t be commenting on this website agsin - as I mentioned, I am not one given to regular posting. Just one parting thought, though. I am sure that you are well aware that karma, when ever it visits, can be both good, and bad. Since you refer to the person who is the subject of this thread as a sneak , I am not given to believe that you are wishing them love and light, peace and prosperity. Quite the opposite in fact. Being a sneak is one thing; bad karma, when you have MS, is another. I will say no more on the matter. ThoughI will keep my membership, as I say I shan’t be commenting here again.

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[quote=“Bettiboo”] I’m sorry, Poppy; I didn’t realise that length of membership precluded commenting. I shan’t do it again. [/quote] It doesn’t. I never suggested that it does.

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Your welcome Sarah,
I didnt want to be seen as scare mongering, I just told it exactly as it was.

Like you and everyone else I’m very glad to find out that our personal info is safe with the site, however I guess theres always a way that we can leave our selves open without thinking about it.

On that note, and after going through this experience, can I just suggest that perhaps having a “made up” username might be a safer option than showing your actual name ?
If indeed that is your actual name ?
Just a thought and I hope you dont mind me suggesting it.

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The behaviour of the person who complained is very odd! If I read comments about my clinic and I wasn’t happy abut them I’d post a message giving my experiences at the Clinic. I certainly wouldn’t contact the clinic. I would be asking who exactly at the M.S. Clinic responded to the information about your posts. Did he/she have any business doing that. And why on earth is the Clinic being so ‘thin-skinned’ about this - can they not take a bit of criticism? As for the MS Society - they don’t come out of this smelling of roses - they run and administer a site where one of its members who hasn’t broken any rules has been victimised. Just a thought - has the sneaky poster been ‘ex-communicated?’ - hope so!

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From what I’ve been told by the clinic this person brought the posts directly to the attention of the consultant and specialist nurse. A discussion was then held with those concerned within the clinic and it was decided to contact the MSsociety. I was contacted by the clinic secetery who said the clinic was approached by a patient and the posts we’re pointed out to them. I was even asked if I wanted to have treatment ceased and transferred, being told " you don’t need to make your mind up today, but have a think about it". If I’m honest it happened out of the blue and I was taken back, I was also in work sitting in an office full of people, so it was hard to take it all in.