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
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
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