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

Hello all,

We're aware that there are some problems for some when posting to blogs. Unfortunately since we are operating on a skeleton staff over the holidays we won't realistically be able to fix the problem until the new year.

If you are using Internet Explorer to browse the internet I recommend you try Firefox as there seem to be fewer problems posting with Firefox.

I'd like to offer my sincere apologies for this, and I hope that you manage to make yourselves heard in other channels like the Chat Room and your statuses.

Best wishes for a happy Christmas, and thank you once again for your understanding.

Rebecca x

Hello all,

It has come to our attention that a community member going by the name of Anna Johns is in fact a girl named Abbie who fabricated her story. Anna Johns has now been removed from the site.

She has posted a message to a Facebook group accusing her of being a fake to confirm this:

I am so sorry to those of you who have spent time talking to, supporting and crying for Anna and her family.

Personally I was taken in by this story too. But I would always rather be tricked because I am too trusting, than fail to support someone who genuinely needs it because I am not trusting enough.

***I would like to take this opportunity to remind you all NEVER to share personal details, send money or swap Facebook account details. I would suggest that you never even tell people your real name.***

The person who has done this deserves our sympathy. Munchausen's by internet is a recognised condition and I hope that Abbie gets the help she needs. You may find this article in the Guardian helpful to explain a little about the thinking behind something like this.

We take your security very seriously on this site, but there is very little that we could put in place to prevent someone who is determined enough to create an entire false life from joining the site. You can protect yourselves by not sharing your contact details, however sure you are that someone is real and needs your help.

You can offer plenty of support via the Community site, and also remain totally safe and secure.

Once again, I understand how much sadness, disappointment and anger there will be around this, but please do not let it distract you from the main purpose of the site which is supporting each other. You all do such a fantastic job and it would be so sad if something like this managed to ruin that.

Best,

Rebecca.

Hi everyone,

Our developers have been working hard on making improvements to the community. We have several fixes that are now live on the site.

1)    You do not need to be a member to reply to a group

Many of our community members are proactive in supporting others across the site. Now you no longer need to be a member of a group to post a response. We hope this will allow everyone to continue to support others whilst not having to be subscribed to every group on the site.
Please note this only applies to public groups. For groups that require you to request membership, you still need to be a member to reply.

2)    You can now control your email subscriptions for groups

To access this, go to the group you wish to control and click on any discussion within that group and look on the right hand side for the discussion tools tab:

 
From here you can select whether you wish to receive emails notifications for group activity or not.
We are going to build upon this feature, however we have released this as some people have been experiencing difficulties in turning email subscriptions on and off for groups.

3)    View a list of your blogs

Some community members have several blogs, now if you click on My Account > Blog Posts you can view these along with your most recent blog posts. All of your blogs will appear in a bullet point list:

 
We will be building upon this feature and improve signposting on the page itself in the meantime.
Next month we will be releasing a collection of fixes which will improve the accessibility of the site, addressing many of the issues you have highlighted to us. Thank you for all your patience and feedback, it has been useful for us in finding out what parts of the new site you like and what parts you are less keen on. Please keep this feedback coming to the community email address or comment on this post!

Take care,

James

Hi,

A small number of users are having problems using some parts of the site. This being focused around being unable to enter text into blogs posts or discussions. It mainly affects people using Internet Explorer 9, if you are unsure what you are using please check here.

If you are using Internet Explorer, you can quickly fix this problem.

Step 1:

Go to tools and click on Compatability View settings

Step 2:

Add Macmillan.org.uk

Step 3:

Check that macmillan.org.uk appears as it does below, and then click close!

Our developers are fixing the problem, however in the meantime please use this quick fix to get full access to the site.