Private e-mail addresses
Private e-mail addresses I feel very angry about the decision we have been told about this morning that BCC will no longer provide the facility for us to exchange private e-mails.
Whenever this issue arises (as over contact buttons) we are never told why the decision is being made beyond vague references to people getting upset. I have said many times before: we are adults; we can choose whether or not to reply to an e-mail; the existing system had safeguards in that you had to agree to a particular contact.
BCC please stop being so patronising. People with breast cancer sometimes get distressed and upset…you are not responsible for our distress and upset. I’m sorry if some people have had e-mails they didn’t like…but isn’t that life? Our nearest and dearest sometimes say the ‘wrong thing’ but we don’t come to you to ask you to make it better. If people who have agreed to pass on their e-mails to others come complaining to you…you should firmly remind them that you are not responsible for other people’s e-mails.
Over the past couple of years I have had many personal e-mail contacts from forum users. I am regularly in contact with several users and value those contacts very much indeed. These contacts are not just about ‘support’ but about sharing of ideas, campaigning, discussion with others who have similar views about breast cancer or similar kinds of breast cancer. People with breast cancer are not all the same…we all have different needs…we all get on with some other people with breast cancer but not necessarily with all. I don’t want to join a telephone support groiup nor get support from your one-to-one service, but I would like to continue to be able to develop e-mail contacts with other like minded women with breast cancer.
We are all pretty creative and inventive so I’m sure we’ll find a way of doing this, but it is profoundly annoying that an organisation which claims to support people with breast cancer has ignored the majority wishes of its users on this one…and actually you haven’t even consulted us.
Jane
— Ooops sorry Jane — Didn’t see your posting before I started a thread in the coffee room.
My view was slightly different, but the disappointment is the same. And I do feel it is a shame that more detailed explanations of the ‘misdemeanors’ can’t be given. I respect names may not be able to be mentioned but it would be good if since it has happened on these new forums, we could be given what kind of abusive e mails.
It actually makes us a bit paranoid too. I have forwarded some jokes and encouragement in adversity poems that about 20 of us all forward round to each other… I try to vet the ones I personally send out, but you start to wonder whether you have inadvertently done something wrong, as you wouldn’t upset anyone for the world.
Joy xxx
addresses etc Does make one wonder if most of these forums should be private rather than public access if misuse is happening. At the same time I agree entirely that there seems to be a governmental controlling attitude in BCC. If they have had complaints about abusive or unpleasant e-mails, then the offender should be banned and removed from the list. It would be ineresting to know how many offenders have been involved.
Perhaps BCC could be a little more consultative with other charity websites as to how they cope with this kind of thing. It is occasionally referred to - and discussed - but I’ve never seen a blanket refusal of this type. A little more time asking people their opinions rather than apparently arbitrarily dictating actions would be a lot more helpful to them and to us.
If this goes on, we won’t be able to cite trade names of drugs or supplements, mention their suppliers, discuss treatments, give names for companies who supply aids and so on (might be interpreted as BCC sponsoring same or recommending an approach, leading to possible legal action).
And to go back to an earlier moderator posting about copyright, as a copyright holder and a person who dealt with literary rights for many years, I would like to reassure everyone that quotation of poetry or other material in e-mails on a forum of this kind counts as private communication. Permission should be sought and payment probably required when the quotation or use of extracted material is for publication. Forums of this kind are not “publication”.
email I too am totally shocked at BCC’s decision not to pass on email addresses on request. I also feel that the reason given for this decision is wholly inadequate. We are adults after all - and our decisions to use these forums exposes us all to certain risks.
potty
— A few of us have opened a forum, and it is possible to exchange private messages there. You can also exchange email addresses privately. If anyone sends a nasty message, we have the facility to withdraw the ability to send pms from the offender.
If anyone wants the ability to contact others, please go to:
www.phpbbserver.com/breastcancer
and register.
I have been involved with the unofficial BCC chat for over 2 years, and have never experienced any nastiness or unpleasant behaviour there.
Block sender I, too, can see both sides of this issue. If someone has been nasty and vindictive to any other user of this forum, surely they should be named, or barred from using site at least, if that is possible. I still find it hard to believe that fellow survivors would act in this way.
If anyone does get e-mails from senders that they are upset about, surely all they have to do is put a ’ Block ’ e-mails from this sender on their settings. I’m not very ’ computer-literate ', but even I know this can be done.
Marie XX
Not again!!! Just back from a morning meeting to find that yet again BCC is taking something we value away from us for our own good! I always thought that BCC was set up to SUPPORT people with bc and yet the powers-that-be within BCC seem hell-bent on depriving us of some of the facilities we find most helpful and supportive.
Since we lost the contact buttons I have only had one request from another user to exchange email addresses and that was to take advantage of help I’d offered on the forum. Yet what started very simply has already turned into an exchange of messages which has been interesting and stimulating and is likely to be ongoing. Now, for my own good, BCC is telling me that this possibility will no longer be available to me and to anyone who might want to correspond privately with me and I am left feeling patronised and somehow belittled.
Jane has expressed exactly my own feelings of anger and frustration at this decision and I don’t want to repeat her arguments. I just want to say that cancer damages or takes away a great deal from those it affects - bodily integrity, emotional security, confidence, faith in the future - and contact with fellow bc survivors helps us to cope with all this and move on. You have just made that process harder!
Kathy
PS I’d just posted my reply when I remembered one more thing. Since the loss of the contact buttons, BCC has always strongly discouraged us from posting our email addresses in posts or on our profiles, pointing out quite rightly that this lays us open to the possibility of harmful or distressing contacts from absolutely anyone. By now refusing to help us to exchange email addresses privately and safely, BCC is essentially forcing us to use a more risky procedure if we want to have that personal contact. Hmmm!
Kathy
BCC …I find it interesting that very often the responses from BCC can be delivered with a gentleness of touch whilst acknowledging our adult status and on occasion it’s responses can appear somewhat knee-jerk and disempowering. Unfortunately this latest communication is a demonstration of the latter. This seems a strange decision to take given that the decision re the contact buttons has not yet been made - or at least if it has we have yet to be informed of it. Had you forgotton? Or have I misunderstood?
I have the e mail address of one other person (Mole), and she has mine. There have been a few occasions of late when I have wanted to contact others and maybe others have wanted to contact me and yet I felt unable to go through the formal - asking BCC to pass e mails on - process. Now I cannot even do that.
I do wish I had come upon these forums ages ago and had lots of e mail addresses of you others - unfortunately I didn’t and I havn’t. Do I want BCC to set me up with personal peer support, or the one to one support service. Thanks but no - not for me. I would rather be in contact with the women who I have come to ‘know’ through these forums and now stand little chance of that opportunity.
Cynically - I wonder whether the off BCC line contacts has a significant impact on your figures and therefore your funding, but only a cynic would wonder.
My experience is, BCC, the strategy you most favour at times like these is to let the complaints accrue on this thread and …not respond. In education it is called extinction…in this area it is called something completely other!
As always I recommend openness and honesty and an appreciation that we are adults, I do this sadly knowing that you are unlikely to listen to a word.
With great disappointment
Celeste
e-mail addresses How very sad that through the actions of some that we are all to be denied contact with each other.
Whilst it is unacceptable that someone should send harmful or abusive mail, I’m sure this must be very much in the minority when you compare it to support and friendship gained at the time when we were able to use the contact button.
I am in regular contact with many that use these boards, and have met several of them, all of which is being made impossible for newer members, a great loss for them.
As others have said, we are all adults, and I’m sure, like me, most receive unwanted mail everyday, the answer is to delete and block, if these sick individuals don’t get any attention they will soon get fed up and move on. I presume that BCC have taken action and these (this) anonymous people (person) has been removed from this site.
I do feel that if BCC take steps like these “on our behalf” then we should know why.
Ruth x
For Goodness Sake I feel totally belittled by this ruling. And very angry, which is most unusual for me.
When I first came on this site last May the contact buttons were in operation and I was able to speak to people privately if they wanted me to send them Reiki distantly. They were able to fill me in on details which sometimes they did not want put on public show. When that facility was removed I put my email address on my profile but that got removed and I was only last week given the OK to invite people to email me through the moderators. Now that has gone too.
A very sad day I feel. I hope BCC has a good reason for doing this.
Judy xxx
I can see its not easy and I’m not going to say its wrong that we cant get in touch thru Breast Cancer Care but it is sad to think that the actions of a few can change the benefit to so many of private support and friendship.
After having ‘deluded’ mail from the old site, I can see the dangers and reasons for protecting people using this site. We may all be sensible, I have several email addresses which I value greatly, but also got mail from people who later turned out to be rather unstable, both onsite and off. Some of the names may spring to mind for those of you who used the old site without having to think too hard. BCC had the sense to remove these people and the difference noticed by many of us is a vast improvement.
I also made a friend of one brilliant lovely girl via email who sadly is no longer with us who helped me make sense of everything, and for those dealing with it all now they wont have that chance of support and thats a bit sad.
Steph x
E-mail addresses I presume the contact buttons will never be reinstated as a result of this. I wish BCC would be a liitle more explicit about their reasons - I don’t see why the perpetrators can’t be named and shamed. After all, surely they will be banned from using the forums in future. They jolly well should be!
Kneejerk again… I also don’t see why all should ‘suffer’ because of one or two (??) people who abuse the system. If life was like that then one of us would ever do anything.
We are all adults, and we had the right to say no to our email address being passed on - it wasn’t passed on without our consent. If i met someone in my daily life and gave them my email address, then that would be my responsilbility.
Similarly here. we gave our consent - or not - not anyone else. Not BCC or othersuch. I think sometimes some people would like us to be nice sweet, quiet, little ‘victims’ who are so grateful and happy with whatever comes our way. Rather than thinking responsible adults that want a say in our lives and want to meet others in a similar position, deal with things together, and gain strength and support from and for one another - and make up our own minds about the momentous question of whether our email address is given, for goodness sake!
This is a real shame, and in my mind another kneejerk reaction that devalues the site.
I forgot to add… … do BCC ever listen to what their forum members want?
I know they are a charity so have to be very careful to guard charity status, but i am relatively new to the site, and seem to get the impression that they don’t listen. Have BCC ever listened to, and acted on. the forum members requests or suggestions?
Or all we all wasting our breath and better off in a forum that isn’t so dismissive of its members? Or am i completely wrong in my perceptions?
just interested in what’s gone on before i got here.
Oh Dear BCC, This is not the way If you want to withdraw or change a service of any sort then the first thing you must do is explain to the users exactly why you wish/need to do this.
It is a simple matter to give us a clear and honest explanation of why you wish to take this step without providing any names or causing you to “maybe” fall on the wrong side of the law and we would respect that much more than this type of “nannying” for our own good.
While I fully understand that many of us are fragile when we first come to this forum, we all are much stronger than you realise, we need to be in order to handle the treatment, emotional and physological impact that our dx brings.
Providing us with a vague, all encompassing excuse does us and you a disservice and you then provide the disrupters of the site an open handed victory.
By no longer being willing to provide us with a means of contacting each other outside of this forum, you are deliberately encouraging forum members to go to other sites to seek the understanding, information and support they require by being in contact with other like minded BC people. Ultimately this will have a knock on effect for those that come after and reduce the effectiveness of the service you can provide.
Legally I do not think you can be held responsible for any “nasty” e-mails which may be sent by an individual to another individual if you have been asked to provide the middleman service of providing the e-mail address exchange providing both parties have agreed to that exchange, if that is the case then I really do not understand your position.
We do not need babying and are all capable of either ignoring or deleting offensive e-mails or even reporting them to the police if we so wish.
I really would ask you to listen to your forum members this time and continue to provide us with a means of communicating via e-mail on an individual basis if we wish, rather than finally allow the minority to win, after all that is their only purpose in doing this.
Siggy
Human contact I’m not planning on adding anything else to the privacy issues. I just want to say this.
Sometimes you spot someone who has interests and circumstances which are like your own. Sometimes following up on this is not really relevant to these forums. Sometimes you want the chance to find human contact that’s outside this subject and beyond and existing group of friends.
I believe that I can be a more complete person by knowing a variety of other people, by allowing them to influence me or advise me or support me. And sometimes by returning the favour. I believe that knowing a lot of people helps me to be interested in life and interesting.
I do not want my ability to contact other humans restricted. I respect the need for caution and privacy and am happy to work by the rules but I’m not happy be to refused the opportunity to make new friends.
My responsibility If I agree to someone having my email address and it all goes wrong and they turn out to be abusive or whatever then it is my own responsibiilty to deal with that not to blame BCC. I am not sure that it would even occur to me to do so. I would just make sure that I blackilsted or bounced the emails.
My email address is already on the internet on my drama group website as a contact and has never caused me any problems. Any junk I get just gets deleted. I never thought that was anyone else’s responsibility but mine.
I suppose I might report someone as a bad forum user if I thought there was a danger to someone else if they also exchanged email addresses, and I guess I would expect BCC to act on this by banning the person or warning the others but that would be about it. Even so what some one does away from the forum still has nothing whatever to do with BCC.
I don’t see why BCC are getting on their high horses about this at all. I think we need to be told what happened as it appears from some of the responses here to happen so quickly. I also think that if BCC felt that they needed to act, then they should have just dealt with the individual, end of story.
I am far more likely to want to contact someone on the forum because they live in my area or attend the same hospital (as has happened) or have the same interests as me than use the alternative suggested by BCC which is for a different kind of support.
Just had to add my two pennorth as this seems a bit daft to me and smacks of the nanny-state.
Linda
My view Can I just add my voice to this?
I was first diagnosed at the age of 30 - much younger than many, although I know not all, of the women here.
At that time although everyone’s postings were of interest to me, it was vitally important for me to contact someone of my own age. I found a woman on the site, emailed her through the contact button and a day or so later she got back to me. This was at the time when i was literally spending hours on end sobbing my heart out because I was completely terrified about what had happened to me.
Clare sent me an amazing email to me which made me feel a million times better. She talked about her own expeiences with cancer and treatment and gave me so much reassurance that i also forwarded the mail onto my Mum and a few of my friends who were also suffering with me.
We struck up a friednship, talked on the phone regularly and she even arranged for me to go to a Younger Women’s forum (at that time I probably wouldn’t have wanted to go to such an event) so that we could meet up.
Does BCC not have idea of how it feels top be diagnosed with this condition? Do you now understand how important it is to have relationships with people going through the same thing?
I am aware that there is peer support and telephone conference calls but I have never had any desire to take part in any of them. Why not give us a choice of how we make friendships? I’m not a child and can accept that I might not get on well with everyone I encounter. If I don’t I’ll take steps to deal with it myself.