Pseudomyxoma Survivor Facebook Support Group
Introduction from our lead administrator
Our group is open to patients with pseudomyxoma peritonei (PMP), appendix cancer and other peritoneal surface malignancies and their caregivers, with the primary focus being PMP. We have members from all over the world and from all walks of life and from all corners of the world, covering many different characters, belief systems and ethnicities, therefore we kindly ask that the topic be kept to cancer and the support of the group and not swayed towards any religious or political persuasions.
The security setting of the group is set to secret so as to protect members’ privacy and the only methods of joining are through the Pseudomyxoma Survivor website or to be directly added by another member. It is a safe, secure platform in which to share diagnosis, treatment options, support, the highs, the lows and all bits in between. We ask that all members treat each other with respect.
Unfortunately, there will always be times in any group of this size when issues arise. If a member does not comply (be this in a group post itself or in a messenger chat conversation) and an escalating situation develops, they will be removed from the group to protect all involved in the situation. This is with the intention of a cooling off period for all parties concerned.
The respect to members also falls into comments within posts as well as posts themselves. I can speak on behalf of us all when I say many, many hours go into running both this group, all in our spare time and we take no wage for this. We want to give back.
We welcome all. Our code of conduct exists to keep our group a safe environment and to continue its success. It is a place for mutual support underpinned by mutual respect. A major part of the group’s success is the significant contribution that support group members make by one another offering sound and supportive advice, information and a ‘listening ear’.
So, how can you get involved? Pseudomyxoma Survivor does not receive any government or statutory funding and rely 100% on voluntary donations to fund our vital work. With your help, we can continue to provide our support services and deliver this vital service to those affected by PMP, appendix cancer and other peritoneal surface malignancies.
We are always looking for volunteers to join our moderator team and for other roles, please do get in touch with us to find out more. Thank you in advance for your contributions and welcome to the family!
Code of Conduct
Our group is a secret Facebook group, this means that only fellow members can see the group and who is in it, and only members can post and see posts. Anyone can add members to this group, but only an admin or moderator can approve these members. If you add someone to the group, a member of the moderation team may contact you to make sure that you haven’t added someone accidentally.
As the support group is hosted on Facebook, Pseudomyxoma Survivor 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.
To prevent ‘spamming’, the team will use their discretion when approving new members.
The Administrators of this group are Pseudomyxoma Survivor trustees and the moderators are charity volunteers. Together they make up the moderation team. The lead administrator is the trustee with responsibility for the support group.
Through the group, Pseudomyxoma Survivor may inform you of services and activities that you may find useful, both those offered by Pseudomyxoma Survivor and by others.
This group is owned by Pseudomyxoma Survivor, we would respectfully request that fundraising requests are kept to the document in the files section. Pseudomyxoma Survivor reserve the right to remove fundraising posts and add them to said document.
The views and opinions expressed on this group are those of the authors and do not necessarily reflect the views and opinions of Pseudomyxoma Survivor. Advice received via the group is for general guidance purposes only. No steps should be taken relying only on it. Appropriate professional advice should be sought before any course of action is pursued. If you have an urgent medical enquiry we recommend that you contact your GP, call 111 or in the event of an emergency call 999 or attend A&E (or the appropriate services in your country).
This group will be monitored and moderated by the moderation team, who are all volunteers with Pseudomyxoma Survivor. This moderation is not available 24/7, however, unsuitable posts will be removed in a timely manner. We encourage all members of this group to self-moderate and be conscious of their posts, replies and the feelings of others. Anyone deemed not to be a genuine user of the group for support purposes may be removed from the group without consultation. If you have concerns about any of the posts on the Facebook group please report the post or contact the lead administrator for the group.
Moderation will cover the following topics, however, we reserve the right to evaluate each incident on a case by case basis.
Personal abuse – or negative posts (flames/trolls) towards other members are not tolerated on the Pseudomyxoma Survivor Facebook Group. Abusive messages will be deleted without consultation. The consistent criticism of a person’s comments or views will be seen as abuse. Initial offenders can expect to be issued with a warning, then a permanent ban if they continue to flout these rules. Please respect the opinions of others even if you disagree.
Questionable, swearing, foul or aggressive language, will be removed at our discretion, please try to keep this to a minimum. Such language towards other group members is prohibited.
When quoting from other sources please ensure that you quote only the section of the source on which you are commenting. Any posts that fail to meet this requirement may be removed. If you would like to make the full quote available to the group please include the link.
The Penalty System
Warnings or permanent bans
In extreme cases, warnings or permanent bans may be issued.
Protect yourself on Facebook
Pseudomyxoma Survivor would advise that you do not accept any friend requests from people you do not know as this will give them access to your private information.
Please be aware of your privacy settings on Facebook and set them to a level that you are comfortable with. Please also be aware that Pseudomyxoma Survivor 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 Pseudomyxoma Survivor group. If anyone feels their privacy has been violated, we encourage you to report it to Facebook directly.
If you are a journalist, researcher or health professional with a personal connection to pseudomyxoma peritonei, appendix cancer or another peritoneal surface malignancy and therefore also a member of our group, please contact us before making a post for the purpose of your job so we can approve it. You can email us – firstname.lastname@example.org.
We were so happy to receive this box of knitted items from Pseudomyxoma Survivor friend, Margaret. Knitted by Margaret and her friend Marion, they have donated them to Pseudomyxoma Survivor so that we can offer them to you.read more
Pseudomyxoma Survivor is one of over 125 patient organisations that have signed Rare Disease UK’s open letter calling on the Government to review and refresh the UK Strategy for Rare Diseases. The letter has now sent to Baroness Nicola Blackwood, the Minister in charge of rare diseases, and Rare Disease UK have requested a meeting with her to discuss this further.read more
A poem was shared in our support group today which reminds us that some days we can’t put a brave face on it and that’s okay.read more