CLAPA’s Facebook Support Groups are a way for people affected by cleft to swap photos, stories and words of comfort and encouragement in a safe environment where everyone ‘gets it’. Over the years, these have grown into active, vibrant communities which have seen thousands of people get the support they need at all hours.
These guidelines and any actions taken by administrators are intended to make sure these groups remain a welcoming environment for all those who need support.
Please read through these guidelines thoroughly before posting, and use the contact details below should you have any concerns or questions.
By joining CLAPA’s Support Groups, you agree to the following:
- Taking personal responsibility for all posts and comments you make, and for following the content guidelines provided here.
- Respecting the different backgrounds, beliefs and personalities of others in the group.
- Practicing empathy, understanding and compassion towards the people who join seeking help and support, even when you may disagree with something they say.
CLAPA is committed to safeguarding and ensuring the welfare of children, young people and adults at risk, and expects all employees and volunteers to share this commitment. Find out more about how we work to keep our service-users safe.
To discourage spammers and preserve privacy, prospective group members must answer questions about their connection to cleft before they are approved to join.
To join a CLAPA Support Group, members must be living in the UK, have their/their child’s treatment in the UK, or be an expat. This is because the way the NHS Cleft Teams work is quite different to what is found in many other countries, and we want to minimise confusion and ensure discussions around treatment options are focused on what is available in the UK.
Members must also have a close personal connection to cleft which matches the group’s purpose (i.e. parents/carers, or adults born with a cleft). Health professionals, researchers and others without a personal connection are not permitted to join. Friends are typically not permitted unless they say they have a strong, ‘family-like’ involvement in the life of someone born with a cleft.
Accepting members will be at the discretion of the admin team. Please give full answers to the questions asked when requesting to join to make this easier for us, and do get in touch using the below details if you feel you’ve been refused unfairly.
These groups are ‘Closed’, so while posts may show up on your timeline, they will not be visible to non-members, and others will not be able to see that you’ve joined the group. However, as these groups are hosted on Facebook, CLAPA cannot take responsibility for breaches of privacy as a result of errors or changes on Facebook’s part.
To preserve the privacy of these groups, members are never allowed to share images, posts or other content posted by others in the group outside of the group without the poster’s explicit, written consent. Members found to be breaching this policy will be removed and banned from the group, and may be reported to Facebook. If you feel your or your child’s privacy has been violated in this way, please report it to Facebook directly, and alert the admins.
The content policy outlined here is intended to ensure these groups remain friendly, supportive, reassuring environments for new and existing members alike, where interactions are positive and polite and where disagreements can be dealt with respectfully. In line with this, the following content is not allowed:
- Negative or unhelpful comments. These are thankfully very rare, but our admins will take swift action whenever comments like this are spotted. This support group is a safe space for people to express their concerns and anxieties related to their and/or their child’s cleft alongside celebrating milestones and victories. We urge all group members to keep this in mind when responding to posts. Posts or comments which contain personal attacks will not be tolerated, even if they are in response to other attacks or negative comments.
- Content irrelevant to cleft and related conditions, and/or CLAPA. For example, promoting a business or selling items clearly unrelated to cleft or CLAPA. Posting spam, junk, chain messages or phishing content is also not allowed and may result in immediate removal from the group.
- Posts seeking to fundraise for other charities. As a small charity, it is our policy not to allow fundraising posts for other charities (including hospital charities) unless a proportion of the funds are going to CLAPA.
- Inflammatory posts or discussions. These are support groups; they are not open discussion groups, and are not an appropriate forum for arguments. If a post upsets you, we strongly advise you disengage, do not respond, and take time away from the group as you feel is necessary. Particularly inflammatory comments may be hidden or removed. If the situation escalates, entire posts may be removed, and a temporary ban may be placed upon discussion of this topic which will result in posts being removed without warning. An administrator will explain why this action has been taken.
- Complaints about a particular Cleft Team and/or clinician. Complaints about the actions of a Cleft Team or clinician should be made directly to the Cleft Team, or to the Patient Advice and Liaison Service (PALS) at the hospital in question. While we understand some members may wish to use these groups as a way to vent frustration or other negative feelings around their/their child’s care, naming (or otherwise identifying) health professionals in negative posts is strictly prohibited, as these can cause undue worry to new and expectant parents and damage CLAPA’s relationship with health professionals.
- Complaints about CLAPA, including about specific staff or volunteers. A support group is not the appropriate forum to air or discuss complaints of this nature. CLAPA has a transparent and robust complaints policy and procedure available on our website. We fully encourage anyone with a complaint or concern about any area of our work, or any specific staff member or volunteer, to get in touch directly to let us know.
- Medical advice. We encourage group members to share their experiences of care and what worked for them and/or their child, but please don’t give medical advice. This is the difference between ‘I found this technique worked well’ and ‘You should try this particular medicine’. Everyone’s situation and medical history are different, and what you read in the groups should never replace the advice given to you by your Cleft Team and other medical professionals.
- Touting of private health (or health-related) services. Using CLAPA’s Facebook groups to promote private healthcare services (free or paid) is not permitted. You may make recommendations, but these should be based on your genuine personal experiences with a service, and not on any personal or professional links you may have to it. More Information.
- Selling or donating items outside of our policy outlined below.
- Personal contact details. This is for your own protection, as CLAPA has no control over what others in the group may choose to do with this information. If you wish to share these details with another member, please do so through private messaging.
- Personal details or photos of others (or other people’s children). These must never be posted without explicit, written consent.
- Offensive or inappropriate posts. These posts will be removed immediately. Based on the admin’s best judgement on the intention behind the post or comment, members may be removed or banned from the group. These include:
- Posts that are intended to upset or offend those affected by cleft or related conditions.
- Text, images or other media that could reasonably offend someone on the basis of race, age, gender identity, religious or political beliefs, national origin, disability or sexual orientation.
- Illegal content or content encouraging criminal activity or related to illegal drugs.
Selling or Donating Items in Facebook Groups
Group members may engage in a limited amount of promoting the sale and/or donation of cleft-related items to other members at our discretion. CLAPA is not responsible or liable for any promotion or sale and all payments/transactions are strictly at your own risk. If you have any doubts about a transaction, don’t go through with it.
You are welcome to offer new, unused teats and/or sterilised bottles to other users. We would encourage you to only charge the cost of reasonable postage of the items. Any payment should be handled through a third-party system such as PayPal which will allow the buyer to recover their money if the items are not delivered.
If you sell non-medical items related to cleft, such as babygros, photo frames featuring slogans, etc., you may post a link to a trustworthy shop or website (e.g. Etsy) where these items can be purchased. You may not sell in this group by asking people to contact you directly.
If you wish to sell items with the CLAPA logo and/or donate a percentage of profits from sales to CLAPA, you will need our permission to use the CLAPA logo on products, and we must have an agreement in place with you before sale/promotion. Please email [email protected] to find out more.
If you have any questions about these guidelines, please contact [email protected]. CLAPA reserves the right to change or alter these guidelines at any time without notice so please do check them again should you wish to sell or donate anything within the group.
There are several terms that have been the subject of heated discussion in these groups in the past. These are ‘harelip‘ (and variants like ‘hairlip’) and ‘cleftie/clefty‘.
Harelip is a term for cleft lip that has fallen out of use and is widely considered to be offensive. This is due to the comparison to rabbits/hares, and the connection to superstitious beliefs about how a cleft is caused. However, many adults born with a cleft will have grown up in a time when it was used as the standard medical term and may refer to their cleft in this way.
Cleftie/clefty is a word sometimes used to describe people born with a cleft. It’s most typically used by parents and carers to describe their young children. While some see it as an affectionate ‘nickname’, others see it as belittling and reducing a person to a condition they were born with.
It is likely that you will come across people using these terms in the groups, and we understand that for some this may provoke a reaction. However, these groups are intended to be spaces for everyone affected by cleft in the UK to share their personal experiences and perspectives. The people using these terms will have good intentions and a genuine need for understanding and support. In these cases, we urge all group members to ‘agree to disagree’ and do what they can to support each other even when they dislike the words used.
If you have serious concerns about the way these terms are being used, or if you believe people are using them to intentionally provoke a reaction, please contact an administrator.
The Groups are moderated by CLAPA Staff members as well as Volunteer Admins. These volunteer administrators are recruited from CLAPA’s trained Parent and Peer Supporters. Their role is to monitor the groups to make sure our content policy is followed and that people in need are signposted to the right support services.
Admins work to make sure the groups remain on-topic, respectful and supportive. They will use their best judgement and consider the intention behind a post or comment, as well as safeguarding issues, when making a decision about what steps to take.
If you believe an admin’s actions were unfair given the above guidelines, please contact us directly using the details below.
Contacts & Resources
For day-to-day issues with social media, contact [email protected]
For discussions about these guidelines, or to escalate an issue, contact the Communications and Information Manager: [email protected]
Complaints can be submitted in line with our complaints policy. The short version is you can submit any complaints to [email protected], including as much information as you feel comfortable doing, and we will pass this on to the relevant person or department in line with our policy. Please let us know when making your complaint if you have a resolution in mind or a suggestion for improving the way we work.
Language Guidelines – A guide to the terms and phrases CLAPA uses and encourages others to use when talking about issues related to cleft lip and palate.