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34 REPLIES 34
Moderator
Community Manager

Re: profiles

Dear forum members

I am going to close this thread.

It is the policy across Breast Cancer Care not to allow the exchange of private emails and the discussion forums are adhering to this wider policy. Although we recognise that some of you have different views on this our decision has to be final. As we have said many times this is to protect the security of the site and our members.

We would encourage you to use our private messaging system if you wish to communicate something with other members that you do not wish to appear on the world wide web.

Best wishes

Jane

Moderator

Breast Cancer Care

ForumMember
Member

Re: profiles

It seems very strange to me that we cannot use the private messaging system with any degree of privacy, the thought of someone else checking up on me at my age is ridiculous. There is always a facility to report abusive mails and the moderators could become involved at that stage.
I am also a member (post edited by moderator) and have made the closest, most supportive network of friends imaginable. We have met, even though scattered around the country, chat on the phone and are there for each other at any time of day or night. To know someone is there who knows you and your history so well that you do not need to go through it all again before starting your latest tale is a blessing.
It is difficult here to form any 'off forum' relationship, with no facility to exchange personal details and I think that is the only thing downside to an otherwise excellent site:)

Guest user
Not applicable

Re: profiles

Is it a year or two years now since the new look site was launched? The main issue of contention on this board continues to be private messaging, or contact buttons as they used to be. I am sure I am not alone in NOT using the private messaging system, because that is a misnomer isn't it? It is just not private.

Jenny.

Guest user
Not applicable

Re: profiles

It is quite clear that Jane, Longden and Belinda did read the post referred to Sam, unfortunately it has failed to convince them ...............and the rest of us.

Guest user
Not applicable

Re: profiles

Thankyou Sam, I did.........before I posted,kind regards .D.

Sam_BCC
Member

Re: profiles

Hi Jane, longden and belinda

Just reading your posts, can I suggest that you have a look at the post previously written by Katie above as it explains some of the reasons why Breast Cancer Care have made these decisons.

I hope you find this helps to clarfiy things for you all.

Kind regards

Sam
Bcc facilitator

Guest user
Not applicable

Re: profiles

I think this site is very interesting and informative,I read a lot but I rarely post these days,as for private messages cannot agree more with what has already been said,It is uncomfortable to me that anyone other than the recipient could read them,and I cannot understand the argument against private messages being just that,totally private,we are all adults..also if another website is mentioned in total good faith in a caring and informative way,why oh why does a moderator have to intervene,I find it all a bit un nerving....people want to write their own posts,not have a ghost writer lurking in the background,sorry but I do find it all a little disconcerting to say the least,.......D.

belinda
Member

Re: profiles

Hi Jane, sadly I think this may now be the case, I read one of dawnhc's messages a few days ago which also mentioned this.
Belinda.

Guest user
Not applicable

Re: profiles

I am very annoyed that my post above was edited by moderators. All I did was name another breast cancer site where it is possible to send private messages and if wanted, exchange private e-mails. I did not even give the web link. Does this mean that we are not allowed to mention other websites?

Jane

belinda
Member

Re: profiles

Like JaneRA I remember the problem on the old forum and I agree with Jane it's completely over the top to call this real psychological harm! It involved a small handful of forum users and we have all had to suffer because of their actions ever since. Thankfully I made contacts on the old style forums and have been able to meet up with others, several times, for continued friendship and support.
A private message cannot be called private if a 3rd party is able to read it. BCC you are asking us to trust the Moderators (who we don't know) but you seem unable to trust us. It's such a shame.

Guest user
Not applicable

Re: profiles

I don't tend to get involved in the politics of sites, but I do find it very strange that moderators CAN READ private messages, because in fact that's what they are, PRIVATE.

I belong to quite a few different forums and did until recently moderate one of them. At no time could I read private messages, yet there were hundreds of people using the messaging system.

Recently on another forum someone even brought this issue up and although it was a different system to the one I had worked with, the answer was exactly the same - Private messages are just that, private. The moderator cannot access them unless sent the message directly to their own in box! I agree with Jane, we are adults and know the risks of the internet. If you are not willing to undertake the risks then don't use the system.

I wonder what the rulings of the internet say about this say about this? Such acts as the The Freedom of Information Act 2000, The Computer Misuse Act 1990 and Data Protection Act 2000? In my eyes the fact that the BCC forum do read these messages must suggest that this forum is being used as a commercial system rather than a domestic system?

I thought the whole point of the forum, is so that we can talk to others in a similar position, to gain support and advice to help us through our diagnosis, treatment or even losses.

Lynn

Guest user
Not applicable

Re: profiles

I have been around the forums long enough to remember the difficulties which led to the withdrawal of the old private e-mailing system. I know that a very few women were upset because they received some e-mails they didn't like but to describe this as 'real psychological harm' is completely wrong and over the top. Did you get a clinical psychologist in to diagnose the harm? At the time the vast majority of users still wanted a private messaging system. The current system is not private since moderators can read our messages. It is also strangely disconcerting to see 'private' messages in the middle of threads.

The internet can be dodgy..we are all adults and know the risks. Other cancer sites here and in the USA operate private messaging sytems which are as 'safe' as the internet can be.

I like these forums, (edited in line with forum terms and conditions -moderator). I find it incredibly patronising that a breast cancer charity should tell me who I can and cannot swap my e-mail address with.

best wishes

Jane

Lucy_BCC
Member

Re: profiles

Dear All

You can use our private messaging system to send messages to another individual registered on these forums. We introduced this system to enable people to post messages to each other without requiring them to divulge their e mail address to someone who, after all, they do not know. In protecting the privacy and safety of our members we are following best practice on many websites, which do not allow any exchange of private details.

The history of this site in particular has informed our decision. When people were allowed to contact each other via email, a few people so abused the system as to cause real psychological harm to others. As a charity charged with caring for people with breast cancer we cannot under any circumstance let that situation develop again. Therefore we will not allow the swapping of email addresses or other personal contact details.

If there is one particular person with whom you wish to begin a correspondence the best way to do this is to set up a new discussion in the private messages category. Then just check when you login to see if you have any messages. The only people who can see these messages are you, the recipient and the moderation team. The moderation team randomly checks messages to ensure that no-one is misusing the system. Again we do this to ensure maximum safety and security for our members and this decision is informed by the bad experiences some of our members have had in the past.

We have noted that some members have asked for an alert system whereby they could receive an email telling them a private message in waiting for them. We are investigating the possibility of introducing this.

Kind Regards
Katie
Facilitator

ForumMember
Member

Re: profiles

Just want to add my support to both LIz and Jane - there is the potential to feel quite 'bare' on open forums and would also like the opportunity to having a private message facility that comes through my emails and also a marker, through my emails, when someone has posted a thread to something that I've also made a comment on.

I agree with the others that it can take ages going through all of them and I can't always remember which ones I've made a comment on!

I've got to 'know' some lovely ladies here and on other sites as well and the information and support that has been imparted is invaluable especially in certain areas that the hospital just can't tell you about. It's not always about the medical info that's important - it's knowing where to access other sites, insurance companies, complementary therapies, etc. etc.

Pinkdove
x

Guest user
Not applicable

Re: profiles

To the moderator:

I am right there with JaneRA - when I got bc I was very isolated in a Fort in Cornwall miles from anywhere. having repatriated from Spain. I had only two friends and no near relatives to help out. I have no parents, neither does my husband, and my only living close relative is a sister some 600 miles away. My husband is an only child as were his parents, and we have no children. I didn't even know what lymph nodes were until dx with idc and my bc nurse showed me them on a diagram. Only when going through chemo did I find this site as I also had a huge flare of Crohn's and that was more than enough to deal with. I eventually was able in 2003 to exchange email addresses with another woman on the this site who had almost the same dx as I had, and she has become a very valued and trusted friend.

I have for some 7 years been a member of the now defunct American Crohn's and Colitis Assocn interactive website where we could exchange email addresses. I met a young 34 yrs old woman on there - Scottish but living in the USA, and she was having tests for Crohn's. At the same time as I was dx with breast cancer, she was diagnosed with pancreatic cancer and Crohn's. . She and I became soul mates in cyberspace - bc is one thing people can almost understand, but nobody wants to hear the details of living with Crohn's. Somehow, we were able to "talk" to each other via e-mail, and she was due to come and stay with me this year, with husband and two young children, but sadly died last February at 37 yrs.

What I am trying to say is that if we hadn't had the facility of exchanging e-mails on the CCFA site, we would never have had the wonderful relationship we had, when we both felt we had no-one to talk to about our problems. When she died, her son of 15 yrs e-mailed me immediately to say how sorry he was that I, as a stranger, living some 6,000 miles away, could give his Mom the love and support he had not done. It was a very salutary moment in my life. I have saved all my friend's e-mails (so articulate and erudite) in case he one day wants to see them. He said he didn't know his mother as a "person" like I did, although she sometimes read him my funny e-mails. So, that is the benefit of being able to email someone privately, without difficulty, and I and my husband, are so thankful for her caring for me with my own problems, when she had a terminal prognosis.

I sometimes think these sites give more prominence to medical matters, although they are extremely important, but at the same time, we do need to contact other people going through this horrendous experience, privately. We don't always want to bare our souls here in cyberspace where anyone can read them. .

Since you stopped the direct e-mailing facility I haven't felt able to contact anyone directly, although some 5 yrs out from dx I know I have a lot to give privately to anyone who is floundering like I was at dx. .
Amen....
Liz.

Guest user
Not applicable

Re: profiles

Just to bang on about it again...why oh why couldn't BCC have devised an ordinary direct private meessaging sytem as is the case on other forums. I am still so annoyed that with the massive resources at your disposal there is no proper system or facility for swapping e-mail addresses if we want to.

Jane

Louise_BCC
Member

Re: profiles

Hi Kay and Jacqui

I will pass your comments regarding 'sticky' private messages to the technical team for consideration. Not sure if this is possible, but the team will confirm this.

On the subject of where the private messages are located. If another user starts a discussion which is private for you, then they should start this discussion in the Private Messages room and address it to you by adding your exact user name.

However, private messages can also be posted within a current thread in any room. This is done by adding the username of the person it is addressed to in the box entitled 'send a private message to'.

My advice would be to occasionally check the Private Messages room to see if anyone has left a message for you. You will only be able to see private messages which are addressed privately to you. (I note that there are currently a few general messages in the PM folder which you will be able to see).

Hope this clarifies things for you?

Kind regards.

Louise

Facilitator
Breast Cancer Care

Guest user
Not applicable

Re: profiles

Nope - didn't work! Search found nothing! K

Guest user
Not applicable

Re: profiles

I'm really confused as well about private messages. My private messages folder has several messages in it but none of them seem to be anything to do with me - not even threads I have contributed to. ANd none of the private messages I've sent or received are in there.

Think your idea of getting them to appear as a "sticky" is a really good one, Jacquie. Hate the idea of someone sending me a private message and me not knowing and appearing therefore to ignore it.

Help please!

Kay

PS would also really like a way of those threads I've bookmarked then being more quickly accessible, rather than having to scroll through lots of new messages each time. SOmetimes I just want to log on and check whether someone has responded on one particular thread. Just now had a thought - what happens if you then search for "bookmarked"? Will that pick up all the bookmarked threads? Will go and try it.

Jacksy
Member

Re: profiles

Should private messages appear as a 'sticky' at the top of all the discussions? or do we have to look under 'private messages'? (that is where the moderator left one for me, which I stumbled across two months later!!) How do we know to look if we aren't expecting a message!!
Please clarify
Jacquie

Louise_BCC
Member

Re: profiles

Hi all

Just wanted to say on the subject of editing posts, if any of the Breast Cancer Care Facilitators edit one of your posts, we would always private message you to let you know why it has been edited. We would never edit without explanation.

I hope this clarifies the position on the use of the edit function by the Facilitation Team.

This facility was introduced as an additional tool for users if they wished to amend any errors or ommisions in their messages once they have posted them.

Regards

Louise

Facilitator
Breast Cancer Care

ForumMember
Member

Re: profiles

Hi RMW

Totally second your opinions! If I have mentioned another website (like a lot of ladies) it's been done in a completely innocent way and for people to have more information - nothing at all to do with quacks etc. Are we not now able to mention insurance companies that we feel have offered a good deal, etc. etc?

That's what's great about these forums as we get so much information from them and I dip in and out of this one and another one which I now feel that maybe I shouldn't mention?!

I also agree with you Dawn that there should be some way of that person knowing that their post has been edited by BCC - we're all adults (well, I think we are!!)

Rant over!

Pinkdove
x

Guest user
Not applicable

Re: profiles

Hi Debbi,

This is a mystery. As RMW says everyone can edit their own posts (the "edit" is on the right hand side) but 2 of your posts still show "edited". It must be BCC who did this, maybe a technical problem.

I will send you a private message to test that for you.

Re secret santa post, I saw the original and then the edited version. The new terms and conditions are affecting some posts.

Margaret x

Guest user
Not applicable

Re: profiles

thanks to everyone who replied and tried to help me.

debbi x

Guest user
Not applicable

Re: profiles

Dear Moderator

I am not sure what harm you think will happen to me if I look at a website containing secret santa gifts. Having served in the police force I am well able to look after myself online. I can understand that you need to stop people advertising "quack cures" etc, but surely you can allow members to offer a bit of support to each other???

Mystified

RMW

Guest user
Not applicable

Re: profiles

Hi Debbi

Everybody has the ability to edit their own posts; that is why you can only see edit by your own posts. It is there regardless of whether or not you have edited your post.

Hope this clarifies things for you.

Best wishes

RMW

dawnhc
Member

Re: profiles

oh debbi - you must be totally confused by now. Your last 2 messages do not have edited by them. But the others do. I think perhaps the moderator has been having 'technical' problems.

I did notice earlier that they had edited someone's post for including a link to a website. Sadly all the post had beside it what was left of it was 'edited'. I do hope the moderator does inform posters if they have edited their posts otherwise it seems somewhat discourteous to me. Perhaps when moderators edited posts they could put beside them 'edited by moderator'? Strangely on that particular post after another member posted to the same thread the moderator went back and removed more of the post - thus making the next poster look a bit ridiculous.

dawnhc

Jacksy
Member

Re: profiles

Hi Debbi,
I can't see anything saying edit next to your messages - they are just the same as everyone elses. Hope this reassures you!
Jacquie

Guest user
Not applicable

Re: profiles

I have just done that and it still says edit.anyone can go on my message and amend it I think.Can you see edit at the side of my messages margaret?

debbi

Guest user
Not applicable

Re: profiles

No I didnt, and they have not been edited by anyone because everything I put is displayed.do you think its because I dont preview post first?I will try it now anyway.God i feel daft.it was easier to use before and i definitely dont understand this private message thing because you can see what people write????

debbi x

Guest user
Not applicable

Re: profiles

Debbi,

Did you amend your posts after posting? If no, I guess BCC has edited for some reason. Maybe the new terms and conditions?

Margaret x

Guest user
Not applicable

Re: profiles

do you know why it says edit at the side of all my posts?I have not noticed it on anyone elses.

debbi

Guest user
Not applicable

Re: profiles

ok thanks katie

regards debbi

Moderator
Community Manager

Re: profiles

Hi debbi

Just to keep you in the picture, work is currently in the final stages on bringing back the profiles.

Kind regards

Katie
Moderator

Guest user
Not applicable

profiles

Can we not access other peoples profiles now?I like to read what other people are doing and where they live sometimes, does anybody know or can you not view them anymore@?If not,what is the point in putting your story in your details/

debbi x