"I just found it was a lot to take in at the start and further down the line in treatment you find yourself asking the same questions you got told and more questions on top of that. You're in shock for so long you tend to miss information" When your child is diagnosed with cancer, you are overwhelmed with lots of information about everything like scans, test results, clinical trials, being on a hospital ward. It can be hard to think straight when surrounded by doctors and nurses, and it is easy to go home without asking what you really wanted to know.
We know how frustrating this can be and how many parents feel anxious and scared when faced with the uncertainty of childhood cancer. But you are not your own walking down this unexpected path. We are launching a new Facebook group for parents where you can connect not only with other parents for support, tips and advice but also have direct access to experts from our childhood cancer community. No question is silly – big and small are welcome! Join our group, post your question and we will answer as soon as we can.
Advice and guidancePurpose
At CCLG we know that looking after a child with cancer can be a scary and lonely experience for parents and guardians. The purpose of this group is to provide a safe community for parents/guardians of children with cancer to mutually give and receive support, to ask qeustions of our experts from our childhood cancer community* and a place for CCLG to share relevant events and services.
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.
With groups it is inevitable that disagreements or emotional situations will arise and not everyone will agree all of the time. In joining a CCLG Facebook group you are agreeing to interact and engage with others in a mutually supportive manner.
*We aren't able to answer questions about specific cases or patients' treatment.
Privacy
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, CCLG 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 CCLG 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 there is nothing we as an organisation can do about this as it is a feature of Facebook itself. If anyone feels their privacy has been violated, we encourage you to report it to Facebook directly. The full Facebook terms of use can be found here www.facebook.com/terms.php
Do not publically post personal details. Always share these details privately with a member you may want to connect with. 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. If you receive an abusive message or one that makes you feel uncomfortable, please alert us either on Facebook or by contacting info@cclg.org.uk
If you have any questions or concerns about privacy while using our Facebook groups, please contact info@cclg.org.uk or send a private message to our main Facebook page www.facebook.com/ChildrensCLG/
Moderation
This is a moderated group, run by the Children’s Cancer and Leukaemia Group (CCLG). We may delete your post(s) if they do not fit within our guidelines. Full details of our guidelines can be found below.
If you have any questions about staff, moderators or issues with their actions, please message our Facebook page of them directly, or email info@cclg.org.uk.
By joining our Facebook group, 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 childhood cancer. 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. By choosing to join the group, you are agreeing to follow the guidelines and rules laid out below. Any discussions deemed necessary with individual members by moderators will be held in private, if at all possible. Moderators may get things wrong. Email us if you think we have.
Guidelines
- Unsuitable posts, personal attacks and negative or unhelpful comments will be immediately deleted without warning and the individual poster will either be warned or removed from the group, depending on the severity of the situation. Examples of such posts include, but are not limited to:
- Posts containing profane, defamatory, offensive or violent language
- “Trolling”, or posting deliberately disruptive statements meant to hijack comment threads or throw discussions off-track
- Attacks on specific groups or any comments meant to harass, threaten or abuse an individual
- Hateful or discriminatory comments regarding race, ethnicity, religion, gender, disability, sexual orientation or political beliefs
In support of useful debates, rather than deleting comments users may be encouraged to edit and resubmit them with, e.g. relating their own experiences rather than comment on the views and experiences of others
- Links should only be relevant to childhood cancer. Please don’t share links where you are fundraising for personal gain, e.g. GoFundMe pages as many members of the group will have their own fundraising pages and this will detract from the main purpose of the page.
- Information provided via our community is not intended to replace or be a substitute for the advice and services of professional experts but rather to provide signposts towards further information and support. CCLG is dedicated to providing high quality, expertly developed information about cancer. Please do not post medical advice, promote alternative therapies or to reproduce information from other sources unless they are quality assured and reputable – such posts will be stringently reviewed.
- While we encourage the discussion of your experiences, this is not the place to raise your complaints about specific 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”.
- Advertising anything, including events and services with no direct link to childhood cancer is not allowed. People repeatedly posting things of this nature will be removed. CCLG aims to offer unbiased and accurate information about childhood cancer
- If you are a journalist, researcher or health professional with a personal connection to childhood cancer and therefore also a member of our group, please contact info@cclg.org.uk 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.