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Facebook Support Group Privacy Information

The Facebook Support Group is one of the UK’s largest online stoma support communities and supports thousands of individuals each year. Effective moderation and safeguarding measures are therefore necessary to help maintain a safe and supportive environment for people living with a stoma, those preparing for surgery, family members, carers and supporters.

Information we ask for and why

As the organisation responsible for managing and moderating the group, we have a duty of care to help protect members from spam, fake accounts, scams, inappropriate content and provide appropriate support in relation to potential safeguarding concerns.

To support this, we ask individuals requesting to join the group to provide:
• Their reason for wanting to join
• Confirmation that they have read and accepted the group rules
• Their full name
• Their email address
• Their contact number

This information helps us to:
• Confirm that applicants are genuine members of the stoma community or have a legitimate reason for joining.
• Reduce misuse of the group by fake or inappropriate accounts.
• Support the moderation and administration of the group.
• Respond appropriately where welfare or safeguarding concerns arise.
• Contact members where there is a legitimate safeguarding or welfare concern and Facebook is not a reliable means of communication.

Whilst safeguarding concerns are rare, they can occur within online support communities. We have used members’ contact details to reach out following posts that raised serious concerns about their welfare, including indications that they may be considering taking their own life. In these situations, Facebook Messenger did not provide a reliable means of communication. Members may not see messages, may have notifications disabled, may leave the group, deactivate their Facebook account, or otherwise become unavailable through the platform. Having an alternative contact method enabled us to make contact and respond appropriately.

Whilst Colostomy UK is not an emergency service, we take our safeguarding responsibilities seriously and may use contact information where there is a legitimate concern about a member’s welfare or safety.

The group provides a significant public benefit by enabling individuals affected by stoma surgery to access peer support, information and community connections. The collection of limited contact information helps Colostomy UK operate this service safely and responsibly.

How We Store and Use Your Information

The information you provide as part of your membership request is submitted through Facebook and is therefore also subject to Facebook’s own privacy and data handling practices which can be found here.

Colostomy UK administrators review the information provided when assessing membership requests. If your request is approved, we are no longer able to see the details in Facebook and instead your details will be securely recorded within Colostomy UK’s CRM system. This is to support the ongoing moderation, administration and safeguarding of the group. Access to this information is restricted to authorised Colostomy UK staff who require it for moderation, safeguarding or administrative purposes.

We do not use this information for marketing purposes unless you separately choose to opt in to receive communications from us. We do not sell your information or share it with third parties for marketing purposes.

Information is retained only for as long as necessary for moderation, safeguarding and administrative purposes and is managed in accordance with Colostomy UK’s data protection and retention policies.

Alternative Ways to Provide Your Information

We understand that some individuals may not feel comfortable submitting personal information through Facebook.

If you would prefer not to provide your details through Facebook’s membership questions, but do still wish to the join the group, please email hello@colostomyuk.org and a member of the team will discuss alternative arrangements with you.

Alternative methods of support available from Colostomy UK

Membership of the Facebook Support Group is entirely voluntary. Individuals who do not wish to join the group, or who are uncomfortable with the group’s joining requirements, can still access a wide range of support services provided by Colostomy UK, including our helpline (0800 328 4257), befriending service, webinars, support literature, Tidings support magazine and listings of local support groups. More details about our other support services can be found on our website: Colostomy UK – A UK charity supporting people with a stoma.

Your Privacy

We process this information under our legitimate interests in operating, moderating and safeguarding our online support communities.

Further details about how your information is collected, used, stored and protected, together with your data protection rights, can be found in our Privacy Policy