Safety and Privacy Guidelines

Your safety and well-being are a priority to us and so we have produced some guidelines that we hope you will find useful. If you have any concerns or questions about this information, please contact Laura Lunt ( to have a confidential discussion.

Becoming a member of Your Rheum will hopefully be a fun and rewarding experience, however, it is always important to think about how to stay safe when meeting new people, especially if you decide to get involved in the online group.

  • Whilst we encourage you to get involved in the group and discuss how your condition affects your life, it is important to be cautious before revealing any personal information this includes, your surname, address, phone number, email or any social media usernames. Other details such as the name of your school or college, parents/caregivers’ names or job titles could also identify you so again just be aware of the information you are giving out.
  • Be aware that some social media apps allow people to see your location, you may wish to turn this feature off in your settings if you would prefer others not to know where you are.

This is a useful guide to turning off your Facebook location settings:

  • Remember that once you have posted information/photos/videos etc. online then it is possible for them to be copied and posted elsewhere. Please don’t post anything you do not wish for others to see. It is against the rules of the group to share other member’s information, which includes their photos and videos.
  • As a member of the group you may decide that you wish to stay in touch with other members outside of the group’s activities. This is fine, but you should only do so if you and they feel comfortable doing so.
  • If at any time you feel uncomfortable about a member’s behaviour you can report it to the Group Facilitator, see the section below on how to report a concern or complaint.
  • If you are under 18 and wish to meet up with anyone you have met through the group, we recommend you take your parents/caregiver or another adult with you. If you decide not to take your parents/caregiver with you, you should ensure that your parents/caregivers are aware of your plans including who you are meeting, the date, time and place you are meeting.
  • Participation in the group and the individual group activities is completely voluntary and you can decide to withdraw from that activity or leave the group entirely at any time.

How to Report a Concern or Complaint

The group will run using a self-reporting scheme, so if at any time you feel uncomfortable or concerned about something happening within the group you can report it to either the group Chairperson or to the group coordinators/facilitators.

All discussions will be confidential and we will work with you to resolve the problem you are facing.

The group coordinators will not be able to monitor activity that occurs outside of the group activity and so may be limited in what they can do if your complaint is about something that has happened outside of the group.

Privacy of Online Channels

The Your Rheum website and Twitter account will be open to the public, meaning all content is searchable and not confidential or anonymous. Members of the groups should consider what they are posting on these communication streams to avoid revealing details about their lives, other members’ lives and research topics that they do not wish for members of the public not in the group to see.

The YPAG Facebook Page will be a closed Facebook page which means that:

  • The Group name is publicly searchable
  • Anyone can ask to join the group, but have to be added
  • The Group’s name, description and members will be available to see to the public
  • What is posted in the group will only be able to be seen by Group members
  • Only current group members will see stories about the group in their newsfeeds

To protect the privacy of both those involved in the online groups and the confidential nature of the research information being discussed, secret Facebook groups will be used to hold the research involvement sessions and discussions, this means:

  • Only current and former members can search for the group
  • Anyone can ask to join the group, but have to be added by a member
  • The group name, description can only be seen by current and former members
  • Members of the group and posts can only be seen by current members
  • Only current group members will see stories about the group in their newsfeeds

Please see Facebook for further information on its privacy settings:

Please see Twitter for further information on its privacy settings:

Any personal data contributed or collected during the meetings by the Public Programmes team/ BANNAR or the University of Manchester will be handled in accordance with the Data Protection Act 2018.

Advice on Leaving the Online Group Networks

If you decide that you no longer wish to be part of the online group, you can do the following:

  • Let the Group Organiser Laura Lunt, know by email: or by telephone 0161 275 1901.
  • If you are leaving both the face to face and online Laura will remove you from the group mailing list so you do not receive any further information about the group.
  • Remove yourself from the online groups – if you do not remove yourself, the Group coordinators will do so for you within 2 weeks of you informing her that you wish to leave.

How to leave a Facebook Group

To leave a group, go to the group, click Joined at the top and then select Leave Group.

When you leave a group:

  • Members won’t be notified
  • You’re removed from the member list and the group will be removed from your list of groups
  • You’ll no longer get group notifications
  • People will no longer know when you’ve seen a group post, even if you saw it before you left the group

For more help visit:


How to Unfollow on Twitter

To unfollow from a user’s profile page:

  1. Go to the profile page of the user you’d like to unfollow.
  2. Hover over the blue Following button on their profile page; it will change to a red Unfollow.
  3. Click the button to unfollow the account.