BBC Radio 4 programme - update

2 minute read time.

Hello All

Laura is away from the office this week. I am the senior manager responsible for all of Macmillan’s online communities and therefore everyone’s comments and emails have been passed on to me by the moderators.

 Why did Macmillan take part in the programme?
One of Macmillan’s core values is “We are open”.  The BBC approached us to take part in this documentary and we agreed to answer the presenter’s questions honestly and help raise awareness about this condition.  Laura gave a detailed 30 minute interview of which 40 seconds was used in the final piece.

 Münchausen’s by Internet is a rare illness and we have only come across a very small number of community members who have displayed certain behaviours associated with this condition in six years of running the online community.

We hoped that the programme would help to improve the understanding and management of a complex mental condition.  

 Why did you allow the BBC to link to a post I had commented on?
One of the reasons that we always encourage community members to protect their privacy and respect the privacy of others is because posts in public groups and blogs have always been visible to the public and are indexed by Google. This is made clear in our Terms and Conditions when you sign up.

 Macmillan aims to support all people affected by cancer. The reason we do not block non-members from finding and reading posts is because we know many people are unwilling to blindly register on a community without being able to see what kind of issues are being discussed. Additionally we want to ensure that anyone who is looking for support by searching for keywords relating to their, or a loved one’s, cancer diagnosis is able to find our community.  

Why did you change the number of replies visible on topics?
We noticed that on Friday when the BBC website was pointing lots of people to our site that it was getting slower. In order to maintain the service, we reduced the number of replies visible on each page.

 How can we protect ourselves?
The best protection that this Community has is its members who always look out for one another and let us know when they think something is wrong.

 The best way for you to protect yourselves is by working with the admin team to report suspicious activity and trusting us to fully investigate. Please remember that we can only take into account information which appears on this website in our investigations, so this sometimes means that it can take us longer to uncover a fake.

 Why are Charley and AnnaJohns’ posts visible?
They’re not. All of the posts made from these accounts have been removed.  The BBC article links to an admin blog (http://community.macmillan.org.uk/blogs/b/admin/archive/2011/11/25/please-read-anna-johns.aspx) updating the community about what happened.  If you see a post that you think was from them, please send us the link and we will remove it. 

 In the interests of free speech we will not erase or forbid any mention of them by other community members as has been suggested.

 Abuse and personal attacks on staff
The online community is a forum for discussion and we welcome your opinions, concerns and feedback.  However personal attacks are unacceptable.  We would ask that you show the same respect that you give each other to our staff.

Comments insulting staff or other community members will not be tolerated. The Terms and Conditions (http://www.macmillan.org.uk/TermsandConditions/TermsAndConditions.aspx) of the site are very clear.

 

I hope that this answers some of the concerns that I have seen expressed today. However if anyone has any more questions or would like more information, please get in touch with me or the Community Team via community@macmillan.org.uk.

 

Best wishes

 Carol Naylor

Social Media and Online Communities Manager

Anonymous
  • FormerMember
    FormerMember

    Is that your way of apologising for Laura stating that we "are mostly elderly and not very IT literate"?  I don't consider myself to be either, and I bet I'm in the majority.

    I have a few questions, how many of you have actually worked with the online forum for 6 years? Do you keep records of people about whom complaints have been made?  I've given up reporting my suspicions about dodgy members, because since James and Thomas left, action is ineffective and very slow.  In deed when I reported the return of a troll, I was told "well they seem to be behaving themselves at the moment".  Is that how it should be?  I don't think so!

    Marsha 

  • FormerMember
    FormerMember

    Hi Carol,

    Thank you for the response but feel it still fails to address the concerns of some very supportive members. The fact that people were scathing about the Admin Manager has been taken as a personal attack. What it was, was was the feeling many members reached, as their own independent conclusion, after listening to the broadcast. I resent that some comments were removed without prior notice from my blog. The comment expressed the true feeling and impressions gained by members and were not a vindictive personal attack meant to cause distress.

    While I accept part of this could be the result of heavy editing by the BBC the actual responses made were not supportive of members and quite condescending in terms of members abilities !!

    The point that has been repeatedly made is that 'Anna Johns' has left the site the majority of member would prefer that any link between 'Her' and them selves were removed, I feel this included the comment on the Post from Admin Disclosing her deception.

    While the blogs have been removed a search on 'Anna Johns'  does bring up the following links naming groups and other members who became involved with her and I feel they too should be removed

    List of Activities of Anna John
    http://community.macmillan.org.uk/members/annajohns/activities/default.aspx

    List of Anna Johns Groups, including comment on her activity
    http://community.macmillan.org.uk/cancer_types/childrens-cancer/default.aspx

    List of Anna Johns Friends
    http://community.macmillan.org.uk/members/annajohns/friends/default.aspx

    Cheers John

  • Whatever the cut made by the BBC was, the mere fact that we all now feel we are elderly and not very intelligent is evident. As to recording cuts, I personally have been filmed for 9 hours which resulted in 6 minutes of programme being broadcast, cuts are inevitable and should have been anticipated! 

    I have known extremely elderly, extremely intelligent people, without whom many of us would now not be here. Insulting older people is not clever, it is demeaning. 

    I still feel that though I personally have had an email apology for the lack of swift response, a 'blanket' apology to anyone and everyone affected by the lack of thought to remove on line identities would be helpful to allow recovery from the present ill-feeling. I am aware that Admin feel that posts are visible to anyone who 'googles'. Well, maybe an apology would also then be visible and would surely improve the standing of all involved. 

  • FormerMember
    FormerMember

    Having had a post deleted earlier today I am wary of posting here.  I have, however, emailed admin with my response to the above.  

  • FormerMember
    FormerMember

    Hi Carol,

    I commented on John's blog although did not say too much in that post.

    I was utterly shocked to listen to Laura's comments when she was interviewed, I accept that her interview was cut short, and the BBC edited most of the interview, but surely you can understand as to WHY! community members are feeling upset about being portrayed as being 'Mainly older', 'Not very computer literate' and so on.

    This is not a personal attack towards Laura, it is my views and I honestly feel just a simple apology would suffice.

    Regards

    Mary