Connect with people who understand life with CF

We're currently trialling our WhatsApp community for specific groups of people affected by cystic fibrosis. These are people who have told us they particularly need a space to connect with others who share their experiences of CF.

You can join if you:

• are an adult with CF who can't benefit from currently available modulator treatments
• are a parent, carer or family member of an adult or child with CF who can't benefit from currently available modulator treatments
• have been affected by a late diagnosis of CF.

You must also:

• live in the UK
• be aged 18 or over.

We hope to expand our peer support WhatsApp community to more people within the CF community soon. Please keep an eye on our website and social media for updates.

Peer support

Peer support can be incredible – being able to connect with people who ‘just get it’, sharing experiences and supporting each other.

It's important to remember that peer support is not medical advice, and it's not the right place to go for help in a crisis.

Peer support groups are a place to both give and receive support. If you're supporting others, remember to take care of yourself as well. You don't need to have all the answers or solve people's problems. Peer support is about listening, sharing experiences, and helping people feel less alone. Simply being there as someone who understands can make a real difference.

What you share

While we've taken steps to make the WhatsApp community as safe as possible, there are always some risks in using social media.

Please be mindful of this, think carefully about what you want to share, and make sure you protect your personal information.

Please respect the privacy of others by not sharing content, including photos, posted by other members outside of the group.

WhatsApp community rules

By joining the WhatsApp community, you agree to follow these rules:

• The purpose of the WhatsApp community is to provide a space for peer support. Anything shared by members is their opinion only, and not the opinion of Cystic Fibrosis Trust.
• Please be clear that any information or tips you provide come from your own personal experience of CF. We may remove posts that are misleading or factually incorrect, particularly if we feel they could be a risk to others.
• Please do not suggest alternative or complementary therapies instead of medical treatment, and don’t encourage anyone to ignore advice from healthcare professionals.
• Please only request to join groups that reflect your own personal experience of CF. This is to make sure the groups are a safe space for people to connect with others who understand.
• Please don't offer to share medicines with or send medicines to other members.
• Respect everyone's privacy: please don't share personal information, images, screenshots or group conversations outside the WhatsApp community.
• Please don't breach copyright or permissions. If you share something in the group, make sure you have permission to do so.
• No advertising is allowed in the WhatsApp community or its groups.
• Be kind: the WhatsApp community should be a welcoming place for everyone. Please treat everyone with kindness and respect. Keep discussions constructive, and do not use inappropriate language or content. Bullying, discrimination, hate speech and offensive comments are not allowed.

Moderation

The WhatsApp community is checked and moderated by Cystic Fibrosis Trust staff (Community Admins) during our usual Helpline opening hours:

Monday to Friday, 10am–4pm, excluding bank holidays.

The WhatsApp community is checked several times a day during these hours. There is information in the WhatsApp community about who to contact if you have any concerns.

We may remove messages that don't follow these rules and, where needed, warn members. If the rules are repeatedly broken, you may be removed from the WhatsApp community.

If you have any concerns about a message, please contact our Helpline and we'll look into it.

Your privacy

Everything posted in the WhatsApp community will be automatically deleted after 90 days to help protect members' privacy.

New members won't be able to see any chat history from before they joined the group.

Cystic Fibrosis Trust can't take responsibility for or be involved in any subgroups created by members, private messaging, or other contact between members outside of the WhatsApp community. We encourage members to keep conversations within the group.

We recommend that you only use your own personal devices for accessing the WhatsApp community, to protect your privacy. It's your responsibility to make sure the devices you use are secure and protected, and to make sure you're happy with your privacy settings on WhatsApp.

Safeguarding and confidentiality

We take safeguarding, safety and wellbeing extremely seriously. We want everyone to feel safe when using the WhatsApp community, and for our groups to remain supportive and confidential spaces.

The WhatsApp community is looked after by Community Admins. These are staff from Cystic Fibrosis Trust's confidential Support Service.

Community Admins are the only staff members able to view or access the WhatsApp community as part of their job role.

Information shared in the WhatsApp community might help us better understand how we can support the community, but we will not share information about individual members, messages, or content from the WhatsApp community with other staff unless as part of our safeguarding responsibilities.

During Helpline opening hours, our Designated Safeguarding Officers are available to review and respond to any concerns. 

We will only share information with relevant authorities when it is necessary to do so as part of our safeguarding responsibilities. This may happen if:

• we believe someone is at risk of serious harm
• we are required to do so by law.

We may keep copies of messages if needed as part of our safeguarding processes. These will be stored on our secure IT system.

If you have any concerns about anything in the WhatsApp community, please contact our Helpline.

If you are in crisis, or are concerned about someone in the group outside of our opening hours, please contact the Samaritans on 116 123.

If you, or someone you know, is at immediate risk of harm, call 999 immediately.

Support with the WhatsApp community

Our Helpline is open Monday–Friday, 10am–4pm if you need any support related to the WhatsApp community.

If you have any questions, concerns, or need help to join the WhatsApp community, please contact our Helpline.

Medical advice

If you need medical advice, please speak to your CF team or your GP.

If you're in crisis

The WhatsApp community isn't the right place to go for help in a crisis.

If you are in crisis, or are concerned about someone in the WhatsApp community outside of our opening hours, please contact the Samaritans free on 116 123 or use their online chat service.

Samaritans also have useful information about supporting someone online.

If you, or someone you know, is at immediate risk of harm, call 999 immediately.

Please read the information above, including the WhatsApp community rules, before signing up.

Complete the CF What's Up? Cystic Fibrosis Trust Peer Support WhatsApp Community sign-up form on MS Forms.

When you sign up, we'll ask you to confirm that you agree to follow the WhatsApp community rules.

Our team will be in touch to let you know the next steps.

You can leave the WhatsApp community or a group within the WhatsApp community at any time. You can do this within WhatsApp yourself, or contact our Helpline and ask to be removed.

If you leave and want to rejoin later, please contact our Helpline.