We kindly ask that only people affected by a personal experience with cancer use the site, and that medical professionals refrain from using the Community to share and offer medical advice to others.
To keep the Community an inclusive and safe place for supportive discussions we ask that all our members follow the below guidelines. If you have any queries or concerns regarding these, please email the Community team at community@macmillan.org.uk – the team will endeavour to respond to all emails within 2 working days.
Please remember that every time you use the Community you're agreeing to our Community Guidelines, Privacy Policy and Terms and Conditions – you should make sure that you understand these documents fully.
Table of Contents
You and your profile
- Please do not set up more than one account, as we do not allow multiple accounts to be registered to one member. If you cannot remember your password, you can change this by selecting ‘reset your password’.
- Please keep your account details private and do not give your login details to anyone else.
- If we block your account, please do not set up another one. If you feel that your ban was undeserved then please do contact us and we’ll be happy to discuss it with you further.
Your username, signature and ‘more about me’:
Your username is how other members of the community will identify you.
- To avoid confusion please do not use terms that reflect figures of authority or formal roles such as nurse, doctor, etc
- Please do not use the '@' symbol in your username as this makes it difficult for members to tag you in posts
- For your protection, do not include your full name, email address, real address, telephone number or any other information which could be used to identify you outside of the Community
- Do not use a name which looks like a full name
- Do not use words which could be confusing for other members, such as terms which reflect features or functions of the site e.g. ‘group’ or ‘blog
- Please refrain from using language that others may find offensive
How we moderate
We ask all members to follow our Community Guidelines. We do not pre-moderate and cannot always check all the content on the community, therefore we rely on members reporting offensive and inappropriate content.
Please also note that whilst the Online Community is moderated outside of usual business hours, it is not moderated 24 hours a day – the Community team will endeavor to respond to all emails and alerts within 2 working days.
In short, we ask everyone to:
- Be supportive.
- Respect others.
- Not personally attack other members or staff.
- Not use abusive or offensive language.
- Use the Community to give and get support first and foremost.
We base our moderation decisions on evidence:
We can use our discretion to moderate content which isn’t what the Community is for.
Our experienced Community team explores behind the scenes and takes decisions based on the evidence available. We are careful to ensure that any moderation decisions are fact-based, and on some occasions, we may ask members to be mindful and tolerant of other members’ feelings and differences in communication styles.
The site is primarily for support – please discuss moderation decisions with the Community team at community@macmillan.org.uk, rather than addressing them with other members on the site. We kindly ask that members do not discuss any moderation decisions on the site. This is in order to protect the privacy of all of our members and to keep the Community a safe space.
What happens when members break our guidelines?
The Community team understands rules aren’t always broken purposefully, but rather because members perhaps aren’t fully aware of our guidelines. In these instances, a gentle reminder of our guidelines, as opposed to a warning, suspension or ban may be made at the moderator’s discretion.
We will let people know when they’ve broken guidelines in most circumstances. We may not contact members involved if we are moderating content over a year old, or we believe a member has joined the Community solely to spam members or promote services.
Our moderation decisions are made as part of our commitment to creating a safe, positive environment. We moderate based on our guidelines and the impact posts may have on our members health and wellbeing.
If a member is continually breaking guidelines however, we may take action which could include, a written warning, 24-hour suspension, and a permanent ban from the site.
Exceptions to the above include instances where members join the Community solely to spam or provoke members - in these instances members will receive an immediate permanent ban.
We reserve the right to take steps or implement measures we think will benefit the Community and its members. Moderation decisions can be appealed by emailing the Community team at community@macmillan.org.uk.
Find offensive or inappropriate behaviour?
Contact us at community@macmillan.org.uk or click the ‘Flag to Moderator’ button on the bottom of a post. Once hit, the alert goes straight through to the Community team who’ll take the appropriate action as soon as is possible.
Community behaviours
Post in English:
All contributions must be in English. This is because the Community team are not able to moderate posts in other languages. It is also important to make sure that all members can understand each other’s posts and so support each other.
Respect others:
- We ask you to be tolerant and respectful of other members’ beliefs and opinions always. We understand that people often have strong feelings about the topics addressed in the Community however, personal attacks are never justified.
- We will remove or edit comments others find offensive or threatening or which are deemed to be escalating a situation.
- We will remove or edit an entire thread if a strong disagreement develops; it is your right to disagree with an opinion, but please do not attack the person or people who hold it and please make your point respectfully.
- Conversations can get heated; in these instances, we ask members to take a couple of minutes or so to think about a response rather than immediately jumping to a response that might potentially cause more confrontation.
- When choosing where to post, please be considerate and look for a group or thread which you feel is most relevant and appropriate to your situation.
- Please always respect the subject and situation of the member who has started a discussion. If you wish to start a completely new discussion, you can do so using the ‘start new discussion’ tool.
- Please always be mindful of how others might interpret your comments.
Be supportive:
- The Community is a space for a wide range of people, many of whom have been affected by cancer. Please focus on supportive and sensitive discussions and always be sympathetic and mindful to other members’ feelings.
- Please do not bully, harass or intimidate members.
- If you have suspicions about another member making false claims, please report them to the Community team – please do not address such matters directly.
- The Community team are the ones able to decide whether a member is fake or not, so please trust us to make the correct judgement call.
Our ‘Only’ groups:
Some groups have guidance in their description about who they are for – we kindly ask that please respect this. For example, the group carers only is only for carers, and the group living with incurable cancer (incurable patients only) is only for those who have an incurable or terminal diagnosis.
The above groups exist so that its members have a safe and comfortable space to talk freely amongst themselves with others going through a similar experience. There are often contrasting and potentially conflicting experiences from a carer to a patient, for example, so it’s important both have a place where they feel comfortable sharing and talking about their experiences.
If you post in these groups but don't fit the group's 'only' description, your content may in some instances be removed.
Staff and volunteers:
Our priority is to protect and support the users on the Online Community. Our staff will always treat you with courtesy and respect, and ask the same in return. We understand that users can sometimes become frustrated, but we have the right to do our work without fear, harassment or personal attacks. Any behaviour which causes staff to feel uncomfortable or embarrassed is unacceptable.
Impersonation, imitation and not telling the truth
Imitating other users can be a form of harassment and we take this very seriously. We may remove any content, delete accounts and ban users who do this. Members who are suspected of impersonating another member will have their accounts suspended pending investigation:
- Please do not give your account to anyone else as this can cause confusion within the Community. We also ask that you please do not sign up on behalf of someone else.
- Please do not allow others to access the Community using your log in details without letting us know first.
- Please do not provide false information in your 'About Me' section or create an account for anyone other than yourself without permission.
Not telling the truth:
Macmillan aims to support everyone affected by cancer. From time to time we are visited by people who want to upset our members or who are not telling the truth about their cancer experience. Fortunately, these cases are rare but sadly they do exist and can have a negative impact upon our community.
If you suspect someone isn’t telling the truth, the best thing to do is to ignore them. Someone who is here for the wrong reasons wants the attention – ignoring them will deter them from making further comments. Please don’t accuse anyone publicly of being dishonest as this can deflect discussion away from what our Community is here for. Instead, report your suspicions to the Community team either by hitting ‘Alert Moderator’ button or emailing us directly at community@macmillan.org.uk.
We’re always cautious when handling cases like this as we are here to support people affected by cancer and do not want to falsely accuse anyone. In some situations, if someone needs help that Macmillan cannot provide Macmillan will signpost an organisation(s) that can.
Community content and jokes:
We know that lots of members find jokes comforting. Members are welcome to post jokes in any conversations where it is appropriate.
We aim to keep the Community focused on support and where necessary, we reserve the right to move content if we feel it’s best placed somewhere else. Please consider using the ‘Laughter is the best medicine’ group to share jokes. This group is a place to share funny stories and light relief with others who also find this type of post uplifting or helpful.
We ask that members do not make jokes at the expense of others, or jokes which could be considered inappropriate. This includes making jokes about other members, or groups of people. This also includes making jokes about hurting others or in any way causing harm. We also ask that you do not post links to external websites or images others may find offensive.
We ask that members are mindful that everyone has a different idea of what is funny. Not everyone might view your comment as just a joke, and your words may be unintentionally harmful or upsetting. The Community is for everyone to find support first and foremost. We will not tolerate discrimination of any kind, even if it is unintentional. If you would like to find out more about what can be considered discrimination, please take a look at the UK government’s webpage on discrimination.
The Community team would not moderate jokes or any content based on our personal opinions or sense of humour. Any moderation we take is for all our members’ safety and wellbeing. All moderation decisions are made based on the content of what a member has posted rather than its intention.
Abusive language:
Offensive or abusive language, particularly that directed at individuals is unacceptable on the Community. Due to the nature of the site, it’s fine to use anatomical terms in the correct context in your comments, but you should avoid aggressive or excessive use of language others might find offensive. Please always be mindful of the way other members might interpret your comments.
We don't tolerate racism, sexism, homophobia, ageism or other forms of hate-speech or content that could be interpreted as such. Harassment and threats of physical violence will end up in a permanent ban.
Report and ignore
If someone posts something you feel violates our Community Guidelines or Terms and Conditions, please let us know immediately, and then ignore it. Email us at community@macmillan.co.uk. Do not confront members publicly, please just report and ignore.
As in real life, not everyone on the internet is as nice as you may want them to be. Some individuals seek to spark a reaction from people by posting inflammatory comments designed to provoke a response (often known as trolling). The best way to deal with this behaviour is to report it, then ignore it. The same goes if you suspect another member of not being who they say they are; report and ignore.
Whilst often difficult, ignoring users who do this is the only way to get rid of them – if they can’t provoke a response, they will leave you alone.
Medical conversations
Macmillan Cancer Support provides high quality, expertly developed information about cancer. Information provided via our Community is not intended to replace or substitute advice and services from professional experts, but rather to provide signposting towards further information and support.
Diagnosis, treatments and side effects are natural topics of conversation on the Online Community. Please ensure that you only share and discuss your own experiences with cancer, and make it clear that you are talking from your own experience when providing information or tips to other members.
Medical tips or information may be removed if any of the following apply:
- A medical statement cannot be verified clearly as coming from a member’s own personal experience
- Contradicts a member’s GP or medical team
- Attempts to provide a diagnosis for another member
- Tells another member what to do
- The medical advice or information provided could affect a member’s medical decision
Macmillan acknowledges that whilst you might know a lot about your own cancer experience, it’s potentially dangerous if the incorrect advice is given to someone else. Instead we ask that members simply share and discuss their experiences with cancer on the Community, and refer members back to their GP or healthcare team if the situation fits.
Please do not promote alternative therapies, or reproduce information from other sources unless they are quality assured and reputable. You can find our Cancer Information pages here or speak to a trained Macmillan professional for free via our Support Line (0808 808 0000 or live webchat, Monday to Sunday, 8am to 8pm).
Please contact the Community team at community@macmillan.org.uk if you’re unsure about any of the above.
Alternative and Complementary therapies
An alternative therapy tries to treat cancer using unconventional methods instead of usual medical treatment.
A complementary therapy is one used alongside conventional treatments to improve quality of life. Complementary therapies do not influence the cancer itself, but some can help to alleviate symptoms and the side effects of conventional treatments.
When discussing alternative and complementary therapies, you may:
- Provide anecdotal accounts about alternative therapy use, as long as you do not make claims about their effects.
- Advocate the use of complementary therapies alongside conventional treatment.
- Make evidence-based claims about the effectiveness of complementary therapies in improving quality of life.
When discussing alternative therapies, please do not:
- Advocate the use of any alternative therapy or for using any complementary therapy as an alternative to conventional treatment;
- Claim that any alternative or complementary therapy can cure cancer, reduce the size of tumours or in any way treat cancer;
- Advise anyone to ignore medical experts’ advice on the use of any treatment whatsoever.
- Promote any alternative therapy.
- Advertise any alternative or complementary therapy for commercial gain (commercial solicitation of any kind goes against our Community Guidelines).
Cannabis oil (CBD):
Following the amendment to the Misuse of Drugs Regulations 2001 to permit the use of cannabis-based products for medicinal use (including CBD oil), the Online Community has recently loosened its guidelines to allow discussions of CBD oil on the site. Whilst Macmillan’s Online Community allows the discussion of CBD oil, please be reminded Macmillan doesn’t advocate for alternative therapies.
Discussions on cannabis itself or any illegal cannabis-derived products will be removed from the site as they are illegal products in the UK. Please also refrain from posting comments that claim cannabis oil cures cancer.
The Online Community team may need to refer posts referencing Cannabis-based products to one of our clinical experts to ensure they are compliant with current UK legislation.
For further guidance on cannabis oil, please see our website.
Ask An Expert:
The Ask An Expert section of the Online Community is where members can ask our specialist professionals with any questions they might have.
Questions asked in the Ask An Expert section are for our Online Community specialists only. It is a space intended for members to post a question to our experts and for them to receive a tailored response from them. We kindly ask that other members of the Community refrain from responding to these questions so other members can see their response clearly.
Photographs:
Members may post photographs on the Online Community within the below guidelines:
Members may not post pictures of medical images of their body, or medical documents. Members may not post a picture which includes what could be considered a private body part, a rash, wounds from surgery or treatment, or blood. The Community team may use their own discretion to determine what constitutes a medical image. The Online Community is not an appropriate place to seek medical advice or a diagnosis. If you have any concerns about cancer, please seek medical advice through your GP or healthcare team.
You may post an image of yourself at your own risk. Members may not post pictures of anyone else on the Online Community for their safety and privacy. This is because we would be unable to verify if someone else had consented to an image of themselves being shared publicly online. Members may not post any pictures which could indicate where they live or work, such as a front door, work uniform, or recognisable feature.
Our members’ online safety and privacy is our priority and we reserve the right to remove any images at our own discretion.
Keeping safe online, protecting your privacy
Please remember that all the information that you post here is public – it can be read by people not logged in to the Community and potentially found through search engines. Discussions and blogs, including any images you post, are all public; only your private messages are private.
- Please do not post your own personal information such as your real full name, home addresses, telephone numbers and email addresses.
- Do not share your profile from any social networking site with other users, as they can find personal information about you from it and this could be a security risk.
- Please do not ask other users to post their personal information such as home addresses, telephone numbers, or email addresses, and do not pressure anybody into revealing information about themselves that they do not wish to.
- Please do not post other people’s personal information publicly on the community either.
Any personal information which you have posted publicly will be edited or removed. If you want to contact another member, please send them a private message through the site. See more about private messages.
We have a Privacy Policy explaining how we handle personal information.
Sending and receiving gifts and money:
We do not allow members to personally send gifts or money, or allow members to request gifts or money from other members. We appreciate that there are considerable financial demands associated with living with cancer and this is why we have Financial Guides and Welfare Rights advisors on our Support Line ready to give you financial assistance (0808 808 0000, Monday to Sunday, 8am to 8pm).
If you are concerned about the well-being of a member, please contact the Community team with your concerns. For more information about support services provided by Macmillan, please visit our website. For financial matters, find out more about how we can help on Macmillan’s financial support pages.
Age limit:
For the protection and safety of children, the Community does not allow members under the age of 16 years. Accounts of members found to be under the age of 16 will be closed.
If you are under 16 and need support, you may find it helpful to visit Teenage Cancer Trust, Winston’s Wish or Young Lives vs Cancer. You may also find our information page for teens and young adults helpful.
Don't face issues alone – suicide and self-harm:
All mentions of intention to complete suicide, assisted suicide or self-harm will be removed from the site. Expressions of thoughts and feelings about these issues are allowed. If you are worried about another member of the Community, please contact a member of the Community team or hit the ‘Alert Moderator’ button immediately.
It is not your responsibility to offer counselling, please refer the member to the below for the appropriate support and advice:
- Our freephone Support Line number which is 0808 808 0000 (Monday to Sunday, 8am to 8pm).
- The Samaritans on 116 123, which is also a free Support Line, or their email address which is jo@samaritans.org.
If you are worried about another member for any reason please contact us at community@macmillan.org.uk.
Events, meetings and group chats with other members
We understand that lasting friendships can form on the Online Community. We appreciate that some members may find it helpful to have video calls or organise meetings in person or group chats with friends they have made on the site.
As the Online Community is a public platform, for your safety and online privacy we ask that no meetings, group chats, events or video calls are organised or promoted within the public groups.
Please be aware that Macmillan are not responsible for your safety in any meetings organised with other members of the Online Community. Any personal information you share privately or meetings you attend is at your own risk.
Private messages:
We respect that private messages are between you and other members. However, please be aware that private messages are still subject to our Community Guidelines. Private messages may not be used to solicit personal information from other members, harass or intimidate members or in any way coerce another member. Private messages may not be used to promote research, surveys, petitions, products or services to members on the Online Community.
Whilst the Community team do not directly monitor private messages, and make every effort to respect the private nature of these messages, please be aware that the Community team are able to view Private Messages. The team would only access a member's private messages if there are serious concerns about the safety or wellbeing of a member, or in direct response to a report being raised by another member involved in the conversation. These messages may be used as evidence for making moderation decisions. For example, if a member reported to the Community team that they were being asked for personal information via a private message.
Legal issues
Posting content that may put you or us at risk of prosecution, such as defamatory posts or content that breach someone else’s intellectual property rights is against our guidelines. Please do not 'name and shame' individuals or organisations, as this can leave both you and Macmillan open to prosecution if comments could be interpreted as libelous. Please do not use our Community for anything unlawful, misleading or malicious.
How we handle data on the Online Community
To make sure that the Online Community adheres to GDPR (General Data Protection Regulation) the following is our data retention policy.
Community accounts:
- We will delete Online Community accounts if the user has not logged into the account within 3 years.
- Once a Community account is deleted, any content posted from that account will be attributed to the username ‘FormerMember’.
Discussion threads:
- Discussion threads will be deleted after 5 years of inactivity.
- The Community team deems ‘activity’ to mean replies to a discussion thread. For example, if a thread has had replies within the last 5 years, this is an active thread and will be retained.
- If the thread was created 5 or more years ago and has had no replies within the last 5 years, this is an inactive thread and will be deleted.
Ask an Expert:
- Any questions asked in our ‘Ask an Expert’ sessions will be removed after 12 months.
Blogs:
- All blogs created by Community members will be retained indefinitely.
Not using the Community for support
No adverts, promotions or spam:
The Online Community is a source of support and should not be used to sell or promote services or products to our members. We consider any commercial solicitation to be spam, including promoting web addresses, products or services. We will not tolerate any company or individual found to be soliciting personal information from our members for commercial gain. Action will be taken against any company found to be acting as an individual.
We only allow other charities, websites or services to be promoted at the discretion of the Community team (community@macmillan.org.uk).
External Signposting:
Please remember we can only make decisions based on activity that takes place on our Community and not on other social networks (such as Facebook). Because there’s no guarantee external groups and similar social networks are moderated and safe.
We ask that members of the Community only signpost to groups or pages run by registered charities with a registered UK charity number. Macmillan have no responsibility for content found outside the Online Community. See our Privacy policy for more information.
No questionnaires, research, surveys or petitions:
We do not allow third parties to post questionnaires, surveys, petitions or conduct research anywhere on the Community. We feel this takes away from the peer-to-peer support focus of our site.
Press and media enquiries:
Macmillan’s Online Community is a peer-to-peer support network for people affected by cancer and not a place for direct press enquiries. This is so our members feel comfortable giving and getting support, and to protect their privacy and personal details.
For press and media enquiries please contact contactus@macmillan.org.uk.
Fundraising:
Please refrain from promoting any fundraising events you might be involved in, even if they are for Macmillan Cancer Support. If you have any fundraising related queries, our Supporter Care team can be contacted on 0300 1000 200 (Monday to Friday, 9am to 5pm), or you can email them at fundraising@macmillan.org.uk.
Please remember
Views expressed on the Community are purely the views of the members and as such don't constitute professional recommendations or advice or the opinions of Macmillan Cancer Support.
We have the right to update and change our Community Guidelines and Terms and Conditions at any time. If you have any questions about these guidelines, or anything on the site at all, you can contact us via community@macmillan.org.uk – we’ll do all we can to help.
