Marie Curie’s Online Community Guidelines

Who is the Online Community for?

We want our Online Community to be a safe, inclusive space for everyone affected by terminal illness. You may:

• be living with a terminal illness yourself
• care for someone with a terminal illness
• be a family member or friend of someone who has a terminal illness
• be bereaved by terminal illness.

This is your space to connect with people in similar situations, to share your experiences and to feel supported and heard. We kindly ask that every time you use our Online Community you comply with these guidelines.

This space, its content and any services provided in relation to the same are only targeted to, and intended for use by, people located in the United Kingdom. By continuing to access, view or make use of this space and any related content and services you represent to us that you are located in the United Kingdom.

If you are under 18

The Marie Curie Online Community is for people affected by a terminal illness who are over the age of 18. If you are under 18, you can find support on Hope Support Services, Carers Trust and Hope Again.

Our Online Community values

• Be kind to each other. A lot of people on the Online Community will be having a difficult time so a little kindness can go a long way. One small comment, or reaction could mean so much to someone.
• Be respectful to each other. Please do not post anything that could be considered offensive, abusive, hate speech, defamatory or otherwise objectionable. It’s fine to disagree with people but please be polite while doing so.
• Be safe. It’s important to be careful about what you share online. Please do not post your real name, address, telephone number or email address anywhere on the Online Community.

What we ask of you

In addition to our Online Community values, we also ask you to:

• Be welcoming. We’ve all been there. Joining something new can be extremely daunting, even more so if you’re also affected by a terminal illness. Please help to make all new members feel welcomed. A little friendliness really can make such a difference.
• Be supportive and encouraging. Encourage other members to join in on the conversation and you’ll be surprised by what you can learn from one another.
• Ignore harmful comments. Please do not respond to harmful comments from people who are looking to get a reaction. Instead, it’s best to report any comments of this kind.
• Do not deceive, mislead or manipulate others or impersonate the Community Moderation Team, members of Marie Curie staff or other users or persons. Be yourself and do not use more than one account on the Online Community.
• Try to assume the best. It can sometimes be difficult to portray tone of voice in a written context. If you’re unsure what another user is saying, assume they are doing so with good intentions.
• Be calm. You may not agree with everything you read, and some comments may cause upset, anger, or frustration. If you find yourself in this position, please do not respond straight away, take some time to reflect on what has been said before responding. Please report any posts that are aggressive, offensive or a cause for concern.

Moderation

The Marie Curie Online Community is moderated by the Marie Curie Community Team, which is made up of staff members and volunteers.

The team regularly check the Online Community to ensure that these guidelines and the terms and conditions are being adhered to. We’re here to make sure this is a safe space, and you get the best experience possible while using our Online Community. We allow freedom of expression within our guidelines for communal discussions, which by their nature cannot always reflect Marie Curie’s stance, advice, or recommendations on any particular topic. Please refer to support@mariecurie.org.uk for specific information or support.

If you have any questions or if there’s anything we can do to help, please get in touch with us by emailing moderators@mariecurie.org.uk.

Please note that the Online Community is not moderated 24 hours a day. The Online Community is usually moderated:

• Monday to Friday from 8am-6pm
• Saturdays from 11am-5pm.

There are ways you can get support outside of the hours that the Online Community is moderated. Read more about getting support out of hours.

Posts are not checked by us before they appear on our Online Community, and it’s not always possible to check of all the content.

If you see anything that doesn’t abide by our guidelines, please do report it to the team. We have a right to remove any posting you make on our site or any material if, in our opinion it does not comply with our Online Community Values.

Staying safe online and protecting your privacy

It is your responsibility to use the Online Community in a safe way. Please remember that this is a public community that can be accessed by anyone on the internet.

Read about how to stay safe online on the Get Safe Online website.

It’s important to remember that not everyone is who they say they are online. To remain as safe as possible:

• Do not share your real name, address, telephone number or email address – even in private messages. If you disclose any personal information to the public community you are consenting to the circulation of that information and if it can be linked to your personal details which you also happen to disclose, you are making yourself vulnerable to predatory and fraudulent conduct.
• Do not share your password with anyone else.

Please also respect the privacy of other users and do not repost or share any private conversations you have with anyone.

If you think anything is suspicious, please report it to a member of the team.

Medical conversations

Due to the nature of the Online Community, it’s likely that conversations about diagnosis, pain relief and side effects will happen. Please remember that an illness can affect people differently. You’re welcome to share your experiences and support each other, but it’s important not to give any medical or professional advice or discourage others from seeking medical or professional advice.

When talking about your experience please do not identify medical professionals or organisations by name when commenting, especially if you're posting a complaint. This is to avoid any risk of legal disputes.

While we’re not able to provide advice, if you have any medical or professional questions, our Support Line team can help to provide information and signposting. Our team is made up of Support Line Officers, Energy Support Officers and Support Line Nurses who can answer questions on all aspects of terminal illness and end of life. They can be contacted for free on 0800 090 2309, via our online chat or via email at support@mariecurie.org.uk.

If you have any medical questions, and are looking for advice, it’s always best to contact your GP, or NHS 111. In an emergency, you can also call 999.

Keeping our members safe

As mentioned above, we want our Online Community to be a space where you can come to feel safe and supported.

We've included the information below in case you or someone you know may be at risk of harm.

Suicidal concerns

Some people affected by terminal illness have thoughts about wanting to end their life (suicidal thoughts) – for some, this is part of a range of feelings they have about their life and for others it’s a more serious wish that they want to act on.

What to do if you have suicidal thoughts, feelings or plans

You can call Samaritans on 116 123 or contact your GP or NHS 111.

In an emergency, call 999.

To ensure users of our Online Community are as safe as possible, all mentions of intention to complete suicide, assisted suicide, self-harm, will be removed. While we will remove public posts of this kind, we will be in touch privately to offer support. We will not remove expressions of thoughts and feelings of suicide, assisted suicide or self-harm.

Safeguarding concerns

Everyone has the right to live in safety, free from abuse or neglect. If you're worried that you or someone else is in danger, or is not being cared for properly, there are people you can talk to, and organisations which can help.

What to do if you're being abused

If you're in danger, call 999.

If you're not in immediate danger, you should:

• speak to someone you trust, like a friend, family member or carer
• speak to someone involved in your care, like your GP, nurse or social worker
• call the social services department in your local council if you live in England, Scotland or Wales. Find your local council on the GOV.UK website
• call the Adult Protection Gateway Service if you live in Northern Ireland. Find the number for your local Adult Protection Gateway Service
• contact one of the organisations on this page.

What to do if you're worried about another member

If you’re worried about another member of our Online Community, please report their post and contact the Online Community team immediately by emailing moderators@mariecurie.org.uk or calling our Support Line on freephone 0800 090 2309.

We take these messages very seriously and want to ensure that everyone gets the support that they need. We will offer members guidance on where to access appropriate advice and support. We are committed to safeguarding all our people. If we are concerned that a member of our Online Community is at immediate risk, we may need to contact the emergency services.

Equality, diversity, and inclusion

We are committed to being a diverse and inclusive Online Community that is accessible to all people regardless of their identification by; Age, Disability, Gender, Ethnic Origin, Faith, Marital Status, Pregnancy, or Sexual Orientation. We do not tolerate discrimination of any kind. We want to make sure everyone we support, regardless of their personal characteristics or condition, receives an equitable service in an environment that is free from discrimination, bullying or harassment of any kind. We ask that you be respectful to all while using our Online Community.

While the web site is not for under 18s, we prohibit any content or activity that is harmful or endangers youth, namely minors under 18 . In the event you come across any such harmful content please report it immediately.

Soliciting

Please do not use the Online Community to conduct surveys, research or fundraising or seek volunteers for any organisation other than Marie Curie.

Please do not offer to sell, advertise, or promote anything on the Online Community.

Please do not spam the Online Community – this includes posting the same message more than once. Also please do not post anything that could be harmful to our systems or service, or to another person’s computer or systems.

We'll remove any posts of this nature.

Complaints and compliments

If you have any compliments about another member of the Online Community on how they have helped or supported you, please do let them know. This could mean so much to them.

If you have any complaints regarding another member of our Online Community, or if anything that has taken place on the community has upset, offended, or concerned you, please do not try to resolve the matter yourself. Instead, let us know by emailing us at moderators@mariecurie.org.uk.

Leave a complaint or compliment about the Online Community itself using our feedback page.

Keeping it legal

Please do not post anything or encourage anything that could be illegal. This includes posting anything or doing anything that breaches the legal rights of others, such as copyright or intellectual property rights.

Get in touch

If you have any questions, comments, feedback or concerns our Online Community Team would love to hear from you. You can get in touch with us by emailing moderators@mariecurie.org.uk or calling our Support Line for free on 0800 090 2309.

Views expressed on the Online Community are those of its members and not Marie Curie’s.

We reserve the right to remove any post or thread if we feel as though they go against these guidelines, or for any other reason if we feel it necessary.