Off Topic - Name published without permission

[Eyesnlegs]

As anyone else had this happen to them:

I paid my subscription to the UK MS Society with the main reason of helping them, staying up to date and finding out what was happening in my local area. I sat back and waited for a welcoming letter - which did not arrive.

Instead I got a copy of my local branch newletter with my name and the small village I live in printed inside saying welcome to our new member name ..........from........

Now if you google my name you find the many publications I have written or contributed too as both a Dr (non-medical) and an academic myself and you also find this d**n newletter. Which means the world and his mother can now find out that I am a member.

At the time I complained, and they apologised (getting off lightly as they had breached the DPA); but this newsletter is still available on the web and now all my work colleagues could find it too.

The Chair of the local branch tells me that not everyone who joins has MS - well OK - I believe her but would my colleagues or future collaborators from both UK and abroad. Academics often look up the credentials of potential collaborators. Yes I can hear you saying - but if they can't accept you with your MS you should not be working with them - but lets be honest here - if there is a choice of 2............

Thoughts and feelings on this welcome - am I being to sensitive here?

Pat

[doublevision1]

I completely appreciate your concern, and like you am surprised that an organization such as this would lack sensivity and perhaps awareness of a legal obligation to protect your personal information.  The various privacy legislation in Canada would/should prevent similar lapses; it is now a big deal for organizations to disclose personal information of clients/customers/employees etc. etc. without the consent of that individual.  Don't know if similar laws exist in the UK that would cover orgs such as the MS Society; if so, you might consider submitting a complaint if only to ensure they develop controls to ensure future breaches do not occur.  Doesn't help you much with your own concern as what's done is done, although you did indicate a desire to help this from happening to others.

I actually really like twopacks idea, get your name out there attached to a few other organizations that you like but to which you have no personal stake, and not only will this make the MS not stick out like a sore thumb, it might make a positive impression that you are so philanthropic!  I am only half joking, it's a pretty good idea as long as it doesn't leave out of pocket for much $ you otherwise wouldn't have felt compelled to shell out.  Of course if those other organizations do a better job of protecting the personal information of its members, you are no further ahead, are you?

This is extremely unfortunate, and sloppy on the part of the MS Society, and I hope they do a better job in the future.

[supermum_ms]

I'm not at all surprised by your reaction, they made a mistake and it was wrong of them to publish your name, probably didn't think of the big picture did they, now what to do about it. You could let your mind think the worst and keep wondering if it is having a negative impact on your career, which wouldn't be good for you. Or you could go into damage control, take back the control if you will, and make the situation work in a way that eases your (valid) concerns.

If I was in your situation, I would, as already suggested, join a few other well known organisations, maybe for Autism, Cancer etc. Organisations you would contribute too, and those that would show your compasionate humanitarian self, the MS will get lost in other worth while organisations and instead of the ? it will be interpreted in a possitive way. As in you get involved in charitable causes, and not that your a member because you have a dx but because you are doing what you can to make a difference.

Turn it on its head, make the negative into a possitive, it will work and you'll be at ease in the long run. My 2 cents anyway.

Cheers...........JJ

  

[opie74]

I am happy to hear that it has been removed. I am an educator at a community college. I was full-time for 6 years, and took some time off after my second son was born.  I now only work one class each semester.  If the college were to find out that I have MS, I may never get my job back.  I know that would be illegal, but you can't always prove things like that.  I completely understand your emotions.  I would have a diffucult time with my temper.  That being said, I am fortunate to have a college roomate that is a local lawyer.  I would have had a letter to them on her letterhead the next day.  

Hang in there,
Opie Ann

[Eyesnlegs]

oops should say 'she acted swiftly and professionally'

[Eyesnlegs]

Yes, these days .pdf files can be copied and posted too.

I posted my concerns on the MS Society forum after emailing them and receiving no reply. To warn others as much as anything else.

I have now had a reply from a really nice lady from the society who has taken off the file and changed the link to Google although it may take several days for the Google link change to kick in.

She swiftly and professionally as soon as she knew and they are no investigating how it got onto the web especially after my original complaint. However, I only discovered it after it was pointed out to me by a colleague. The newsletter was published last December - I have no idea how long it has been there and how much damage it may have done to my career.

Upset is an understatement of how I feel at the moment. Gotta get a grip and put it into perspective - lol

Thanks for yoru support all

Pat xxx

[Lulu54]

OMG!  I totally understand your distress about this one.  I am quite public about my having MS and everyone around here knows.  But that isn't the case for the other dozen or so people on campus who also have MS.  They have chosen to remain private, for various personal reasons.

The professional concern makes a ton of sense.  Everyone googles everyone else these days to gather biographical information, education background and whatever else they can find.  Being in PDF form, can your name be spotted?  I'm just wondering since that really is not text, but an image.

Keep insisting that they change that page - don't just ask.

later,
Lu

[Eyesnlegs]

Thanks for replying, I was very, very upset and as yet I have no idea how much damage has been done to my work life.

I would not have been so upset except there are only 3000 residents in my small town and we all know each other. Now I feel like the whole world knows.

Pat xx

[dragon_flies]

You're not being over-sensitive. Your health is your business. It would be a whole other story if they welcomed you just by your first name and the vague part of the country you were from, perhaps, so that nobody could actually identify you. Heck, even magazines where readers send in letters to the editor often just say "Bob from Illinois" or something to that effect, because otherwise they have to get permission to publish a whole name and location.

At any rate, the MS society should realize that most people who join, rather than just donate money, probably have some connection to MS whether its themselves or friends or family.

I'm a member of BEAT (an eating disorders charity) in the UK, which I got involved with because my sister has just recovered from one. When I raised money for them in a university fundraiser last year, they were very careful to ensure that they had my permission to publish my name when they thanked me for my donation in their newsletter. Any health-related organization should be!

[Eyesnlegs]

Thanks for your kind words they are appreciated I thought I was just being very sensitive. But it is the reason that I removed my photos from the forum as I do have quite a high profile job and would not want everyone to know, as I am struggling enough at work.

I have written to the society and asked them to remove the text from the .pdf published and then republish without it but have had no reply yet.

I am quite distressed about it at the moment and wondered if I was just over-reacting as my MS can make me do at times (quite emotional too).

I don't know if we have any lawyers around here but I thought they needed your permission first?

You would think that the MS Society would be sensitve but then this is the UK!

Pat x

[twopack]

I can certainly understand your concern. Looks like the only thing to do now would be to contribute to several other causes that might also show up.  You know, let it get lost in your philanthropy.

I borrowed some material from the lending library of my state MS Society recently.  When they contacted me later, they asked a few questions about how they should introduce themselves (if at all) for phone calls.  They also warned me what would appear on my caller ID in case I didn't want them to call at all.  I was surprised they were so protective and told my husband that other people must be able to live their lives "quietly" better than I do.  Now I see more clearly how public knowledge can become and how it might impact a persons life (regardless of the laws against that).

Mary