We are currently piloting a Facebook Support Group for Parents and Carers of children with facial palsy.
We have been hesitant in setting up Facebook Groups due to a lack of resources to moderate them but are now in a position to pilot our first group.
We have decided to start with a group for parents and carers with the intention that they have a safe environment in which to exchange stories and photos. We also know how difficult it is for parents to access specialist support and we hope this is a way that families can help each other and make connections locally. We will of course also be on hand to help with information although we cannot offer medical advice.
We ask that all our members accept and respect the actions of our group admin team, as they are working to ensure that the group remains a safe environment and serves its original purpose.
The pilot Facebook Group will function as follows:
- A safe place for support to be given and received mutually between group members.
- A place for Facial Palsy UK and volunteers to share relevant events and services.
With groups it is inevitable that disagreements or emotional situations will arise and not everyone will agree all of the time. In joining a Facial Palsy UK Facebook group you are agreeing to interact and engage with others in a mutually supportive manner. Please remember that the written word can be interpreted in many ways and sometimes comments can be read in a different way to which they are meant.
Our Facebook group is set to ‘Closed’, meaning that non-members cannot see your posts and must request to join. While posts may show up on your timeline, they should not be visible to your friends who are not in the group. However, as these support groups are hosted on Facebook, Facial Palsy UK cannot take responsibility for any breaches of privacy that occur as a result of errors or changes on Facebook’s part. We will do our best to maintain privacy within the group but this cannot be guaranteed because we are under Facebook’s control.
Please also be aware that Facial Palsy UK has no control over other group members downloading or sharing photos. You can change your personal privacy settings as well as the settings on each photo you post to limit this, but it may still be possible for others in the groups to download and/or share individual photos. Unfortunately there is nothing we can do about this as it is a feature of Facebook itself, not the Facial Palsy UK group. If anyone feels their or their child’s privacy has been violated, we encourage you to report it to Facebook directly.
If you have any questions or concerns about privacy while using our Facebook groups, please contact us.
We ask that only Facial Palsy UK staff use the dedicated Facial Palsy UK logo. This is so people know who they are and reduces confusion.
As well as Facial Palsy UK staff, we intend to have trained Volunteers to help moderate the group in future as well.
We may delete your post(s) if they do not fit within our guidelines. We won’t always give you warning or explanation. Full details of our guidelines can be found at the bottom of this page.
If you have any questions about staff, moderators or issues with their actions, please message one of them directly, or email email@example.com.
By joining any of these groups, you agree to:
- Take personal responsibility for all posts and comments, and ensure you follow the guidelines provided here.
- Respect yourself, others and the community as a whole. Groups will have members with a range of personalities, backgrounds and beliefs. At all times you must respect these differences and never intentionally alienate or upset any group of people.
- Remember at all times that the group members are there for the same reason. Try to be understanding and compassionate.
- Only post content that is relevant to the group, i.e. questions/answers, photos and comments to do with facial palsy. Other content may be deleted without warning.
If members are unable or unwilling to follow the guidelines and rules, we would ask that they leave the group in question. By choosing to join a group, you are agreeing to follow the guidelines and rules laid out below.
Rules and Guidelines
- Do not post personal details such as address, telephone number, email address. Always share these details privately with a member you may want to connect with. If you agree to meet someone privately and outside of Facial Palsy UK organised meetings, you do so at your own risk. We cannot be held responsible for this.
- Do not post other people’s personal details or photos and do not share other people’s communications or photographs on your personal Facebook page outside of the group.
- Links should only be relevant to facial palsy. Please don’t share links where you are fundraising for personal gain, e.g. gofundme pages.
- This is not the place to raise your complaints about health professionals and/or clinics. Please refer your complaint to the governing body responsible for the health professional and/or clinic in question. If you want to talk about your particular situation with a clinician or hospital then please remember to avoid generalisations, e.g. “I’m not happy with the service I received” rather than “x service was awful”.
- The following content is not suitable for our Facebook Group(s) and will be deleted without prior notice:
- Personal attacks and negative or unhelpful comments
- Advertising with no direct link to facial palsy or Facial Palsy UK
- In the event of disagreements, if people choose to leave the group, ‘Goodbye’ posts will be left up for a few hours and then removed. They will of course be welcome to rejoin the group if they wish to and are happy to participate within the rules. The ‘goodbye’ posts are removed to stop bad feeling snowballing out of control, rather than to silence anyone. We just want the group to remain a welcoming environment for everyone.
- Questionable and bad language will be removed at our discretion, please try to keep this to a minimum.
- If you are a journalist, researcher or health professional with a personal connection to facial palsy and therefore also a member of our group, please contact firstname.lastname@example.org before making a post for the purpose of your job so we can approve it.
- Please always be very welcoming of newcomers. As groups become more established it is only natural that cliques may be borne out of good friendships. Please remember that we were all new once.
Don’t have Facebook?
We can still put you in touch with any other families offline. Please get in touch for further information and support.
Last reviewed: 01-03-2016 || Next review due: 31-07-2017