… why we are not allowed to direct members to other sites anymore?
I sent a perfectly reasonable pm to another member of this site recently, directing her to another site, only to be told that it had been deleted because it contravened BCC’s terms and conditions.
Also, I take issue with the word ‘private’ because BCC’s messaging system is anything but. As a grown woman, I feel that Big Brother is watching over me.
I know of at least one other breast cancer site which allows members to post links to other sites, so why is this a problem with BCC?
We are all people who have suffered at the hands of this deadly disease, and ought to be allowed to help others in the same position.
As we have posted on the site we have updated the terms and conditions for usage and tightened up the sites to which we will allow links.
We have done this because we are now receiving approximately 12,000 posts every month, because of this we have had to review our policy on allowing other sites to link from our forums. The increased traffic to the site means we are unable to check every link which comes in, we have therefore decided to adopt a more rigorous online safety policy. We have looked at the policies of other major providers of discussion boards, such as the BBC. After consideration, we have decided to restrict the number of sites which we will link to. From now on we will only link to recognised registered charities or relevant partners and will not endorse any site for which we cannot ensure either reliability of information or confidentiality of users.
We have taken this decision to guarantee the best information and security.
I have only ever given links to other websites in good faith and ones that I have had experience of or someone within our support group (normally the breast care nurse) has given me and have used and thought they were good.
I think ultimately we are only trying to help each other and provide that extra help that very often is missing within a hospital setting.
I have used links provided by others in the past and have found them very helpful. I have also passed them on. I have never come across a link that was inappropriate in any way. We are all adults here and I’m sure we appreciate that information on the net can be fallible just like anything else.
By removing the ability to pass on useful information BCC is actively denying the help to us that it is supposedly there to promote.
Were there any problems with the previous policy? If it was a problem, then fair enough, but if it is just precautionary then BCC is doing us all a disservice.
Such a shame. First we have the contact buttons removed because of some minor trouble from a very small number of users, then profiles go and are taking an age to reinstate. We are promised a private messaging system which turns out to be not very private at all as any Mod can read our messages. We aren’t allowed to exchange email addresses through private messages even if we have used the boards for years without any trouble and both parties just want to make contact. We aren’t allowed to exchange emails on chat either. Now a popular successful board which was started by valued, knowledgeable and trusted members of these forums can’t even be mentioned.
Belinda - you took the words straight out of my mouth and made good sense of them
Without wanting to be antagonistic, where is this going to end? I have just seen a very lighthearted thread about Italian Oncologists, the poster - knowing she could not post a link - simply stated what to put into a google search bar. Will this be removed? It is the same principle, pointing ‘friends’ in the direction of what you have found to be helpful, supportive, or merely amusing.
As an information resource, this site remains invaluable. It could be so much more. As a charity working on behalf of us, and donated to by many of us with this disease, surely we could have some input into how the forum runs?
The posts we make on the forums are open to the general public to view, but I cannot for the life of me understand why the pm facility is not strictly private and confidential.
Guess my opinion counts for nothing here, so will end this post now:)
I set up the other site with 2 friends I met on BCC when the ability to contact others was removed on this forum.
Stephanie Jacobs and Diana Jupp have both been invited to join the site I can’t mention so they can see for themselves what the site is about.
It is vitally important for us to be able to make contact with others with breast cancer, and the internet is a fantastic resource. We don’t always “gel” with people local to us and the internet puts us in contact with others we may have more in common with.
We have regional forums with many people arranging local meets, and we have some members who have travelled 100s of miles to meet up with their virtual friends.
I know that there is a group of secondary ladies who made contact via the old BCC contact buttons who regularly meet up too, and I know they too value their friendships.
It is beyond my comprehension why BCC seem to go out of their way to make things as difficult as possible for the forum members.
I am amazed that when a minority suggest ‘improvements’ to the forums it happens almost overnight. I suspect a majority here want to continue to be allowed to post links but will it happen?
I’d just like to add my opinion too, as I I think this is a really important issue and BCC is taking a step backwards here.
This forum isn’t just about emotional support but practical support and advice. I have had no imput from a BC Nurse as she left to emigrate to Australia the very day I was diagnosed and it took a couple of months to get in a replacement, by which time I’d figured out most of what I needed to know myself with the help of the postings on this forum. I’ve found lots of the external links very helpful… ie, all the links to affordable travel insurance cover and links to tried and tested sites selling wigs, eyelashes, headcover etc… were invaluable. Are we not allowed to help one another out like this anymore? Seems absolutely crazy to me. Surely BCC could put a disclaimer in their terms and conditions to say that BCC is not responsible for the content and does not endorse any external links appearing in posts - as Roadrunner says, we are all adults and if we can cope with this disease we can surely evaluate the usefulness of external links for ourselves!
I really do agree with what you say here Nicola. I noticed that Macmillan Cancer Support Forums have the following disclaimer in their terms and conditions very similar to what you have suggested.
“The Site and/or the Materials may contain links to third party web sites. If you decide to visit any third party site, you do so at your own risk and it is your responsibility to take all protective measures to guard against viruses or other destructive elements. We cannot guarantee in any way any third party web sites or the information appearing, or any of the products or services described, on such sites. Links do not imply that we or this Site sponsors, endorses, is affiliated or associated with, or is legally authorised to use any trademark, trade name, logo or copyright symbol.”
The information passed on through the numerous links on this forum has been so helpful and it is tragic that posts are being edited to remove links and even references to other sites.
Sadly, I’m starting to lose interest in this site (and I have been using it for two and a half years now). I don’t post nearly as much as I once did. As a secondary breast cancer patient, many of the things I would like to discuss with others, I do not wish to be aired to the world at large. There is no private place for me and others like me and I think it is a major failing of BCC, as the major british breast cancer charity, not to help support us by providing such a facility. You may think you are receiving a large number of posts per week but many, many people are choosing to post elsewhere, to the detriment of this site and its knowledge base. This subject will not disappear and it remains a fact that most other sites allow private messaging. If I had not joined this site before contact buttons disappeared and had not had the benefit of meeting some of the very good friends I have since met, I doubt I would bother joining now. As it is, there are women here who would greatly benefit from being allowed contact with others in a similar situation and this major, major aspect of support is being denied them.
I find this situation unbelievable… this is like being in a ‘nanny state’.
I registered with the site that RMW is talking about 17 months ago after being told about it on here…otherwise I would never have found it…the support and friendship I have found there has been absolutely invaluable. The site does not pretend to be anything more than a support forum…it states very clearly that it is not a medical resourse site.
As a nurse I have to say that I have read many posts on here that contain medical inaccuracies and these have not been moderated out…or commented on…so if that is your concern about other sites then it does not stand up.
I have met lots of the women on that site, we exchange regular private messages, e-mails and phone calls. I don’t feel that I have ever put myself at risk… in fact I feel far more vulnerable on this site as these posts can be read by anyone and come up in a google search!
Surely this is total discrimination to a group of people, who have every human right to contact each other if they so wish. As for the web site link removing, surely as a BC organisation you are as keen as the next person for all of your users to have an informed understanding of their diagnosis, therefore acknowledging that to obtain this it is best to allow them to access to other sites that support your own views?
I know I will be using the site less and less, which is a shame as I have found it helpful in many ways during my BC journey. Bta dmit I have sought adfvice from the other forums available to us.
It would appear, BCC, that I am not alone in my views.
Please, please listen to us, for one day it could be one of you in our shoes, and surely then you would wish to have access to information from other bc patients. That is all we are asking …
I’m part of the secondary group RMW has mentioned. I would be quite lost without my friends in this group. As Jenny has mentioned we don’t all wish to live out our fears, lives, on the world wide web which is why a group of us made contact in the first place ( in the good old days when we had contact buttons.)
Now we are unable to reach out to those here newly diagnosed stage 4 which is a great shame.
We also have a thriving & private secondaries forum on the site that RMW & SEM formed. The really sad thing about it is the rate it is growing at. But it is so vitally important that at that stage we can communicate individually and through meeting offer support that is so essential at this stage.
I am closing this thread as it is in the wrong place on the forums for a discussion of this nature, if you wish to continue or start another please do so in the forum feedback room. Please remember to adhere to our terms and conditions when posting at all times.
BCC are defeating the whole object of this forum which is to help each other deal with the many aspects of BC and interaction between members is imperative if this objective is to succeed. I cannot see any objection to a disclaimer, as sensibly suggeted above and hope a Moderator will comment.
