Resources and Research

Cleft Talk Panel Discussions 

We created our monthly Cleft Talk panel discussions where we spoke about a different topic each month with some members of the community who have lived with a cleft and/or a few specialists. We covered self-esteem, genetics, friendships & romantic relationships, treatment decision making, kissing, sex & intimacy and thinking about jaw surgery. You can watch or listen back to the  panel discussions here. You can watch the discussions on our website and Facebook page, or if you’d prefer, listen to the programmes on Spotify, Apple Podcasts or SoundCloud – all from wherever suits you at whatever time you like!

Developing a Leaver’s Pack

We realised that many of you aren’t aware of what services are available, or what happens if you move to a different part of the UK or overseas. We’ve been working hard to make that right.

We’ve put together a comprehensive pack containing a list of all the cleft teams across the UK, treatment options you may consider in adulthood, answers to commonly asked questions, a letter you can take to your GP to get a referral and more. Following comprehensive input from both the cleft community and the NHS, the pack was being trialed with selected Cleft Teams across the UK ahead of a launch of the final version of the pack in February 2021. We are pleased to say that we have the final version of the pack and we have been busy distributing this to all UK Cleft Teams. If you would like one then you may ask your cleft team or you can receive one via the link below and we will make sure to send it out.

Request Your Guide to Returning to Cleft Care 

Find our short survey below once you’ve read your Returning to Cleft Care Guide. We would really appreciate your feedback on the pack so we can make sure we are meeting your needs and you are getting the right support and information to seek out further treatment if you require it. Thank you so much in advance.

Your Guide to Returning to Cleft Care feedback Form

Reporting back to the community

We have already reported back on the roadshow and preliminary survey findings that have been incorporated in the research papers: Emotional Well-being , Physical Health , Treatment Experiences,  Interpersonal Relationship ExperiencesFactors Associated with Psychological Adjustments in Adults and Expanding Support Services for Adults born with a Cleft Lip and/or Palate which have been published in the Cleft-Palate Craniofacial Journal.

We know that this information is of interest to different people for different reasons, and we aim to make it as accessible for everyone as we can. This will mean working with our colleagues at the Centre for Appearance Research to publish our findings in academic journals which the health professionals working in the field of cleft can access, presenting at cleft conferences, but also reporting back to the cleft community using plain English.

You can find our research summaries here.

Employment Webinars

CV Writing and Applying for Jobs

Application Forms and Interviews

Preparing For Your First Day

Rights At Work

Emotional Wellbeing Q&A

On 4th May 2020, during Awareness Week, our Adult Services Manager, Kenny, hosted a live Question and Answer session on our Facebook page.

In this video recording, he breaks down the findings of a research paper on emotional wellbeing in adults born with a cleft. The discussion covers topics such as self-perception, employment, and family and relationships. He also talks about the importance of discussing mental health and emotional wellbeing when it comes to cleft lip and/or palate, and details how CLAPA can help. In the last section of the video, he answers questions submitted live by members of the CLAPA community.

Please click here for a transcript of this recording, kindly provided by CLAPA volunteer, Ruairidh.

If you have any questions about this recording or its content, please email [email protected].

Physical Wellbeing Q & A

On the 10th August 2020, our Adult Services Manager, Kenny, discussed the findings of new research on the topic of ‘Cleft and Physical Wellbeing’, covering adults’ concerns with breathing, hearing, speech, eating and drinking, as well as the difficulties some adults faced when trying to gain a referral to their local Cleft Team. He also answered questions submitted by members of the community who were watching live.

Watch the video below to hear him talk through what the results mean for the UK cleft community and how services can be improved in the future.

If you have any questions about this recording or its content, please email [email protected].

Interpersonal Relationships Q & A

On the 29th March 2021, our Adult Services Manager, Kenny, discussed the findings of new research on the topic of ‘Interpersonal Relationships in adults born with a cleft’, covering relationships with family and friends, romantic relationships, bullying and discrimination, and what this research means for the cleft community and the future of cleft care. He also answered questions submitted by members of the community who were watching live.

Please turn on ‘CC’ for captions on this YouTube video. A transcript can be accessed here

If you have any questions about this recording or its content, please email [email protected]clapa.com.

Treatment Experiences Q & A

On the 14th June 2021, our Adult Services Manager, Kenny, discussed the findings of new research on the topic of ‘Treatment Experiences in adults born with a cleft’. He also answered questions submitted by members of the community who were watching live. You can find a summary of this research here.

Please turn on ‘CC’ for captions on this YouTube video. A transcript, kindly prepared by CLAPA volunteer, Ruairidh, is available here.

If you have any questions about this recording or its content, please email [email protected].

The Final Year (2021/22)

In Year Three, we wanted to work closely with the NHS to continue to develop services for adults, of course, within the resourcing constraints faced by both CLAPA and the NHS.

For further information about the current events happening in adult services please visit our events page here: 

Continuation of the Peer Support service

You told us that having access to trained psychologists as part of the NHS is super important. You also told us that no one quite gets it like someone who’s walked in your shoes. CLAPA’s peer support service has been around for a while and is one of our most valuable services for adults. We’ll be ensuring that you continue to have access to this vital service, and encouraging more people to volunteer their time as a peer supporter.

Adult’s Café

CLAPA is pleased to introduce our new CLAPA cafe. This online social event is aimed at younger adults born with a cleft and will address some of the issues young adults may face, such as making their own decisions about further treatment, discussing their worries and concerns and supporting each other. A safe space to talk with like-minded people and a place to build confidence and knowledge through sharing experiences. Our next session is taking place 15th January.

Adults Lounge

CLAPA is also pleased to introduce our new CLAPA Lounge. This online social event is aimed at older adults born with a cleft who may not have had access to cleft teams when they were younger and who may not be aware that they can return to treatment at any stage of their life. A safe space where they can meet other adults who may share the same thoughts and feelings as them, a space where they can feel part of a community and where they can build confidence and knowledge through sharing experiences. Our first one is taking place 19th February.

Adults Focus Group

The Adults Focus Group will design a service delivery plan so that CLAPA can continue supporting adults. The group will also be exploring different methods to reach groups of adults who are not aware of the services CLAPA provides and what can be done to ensure we are meeting adults born with a Cleft Lip and/or Palate needs.

Volunteer-led Webinars

Our volunteer-led Employment Webinar series, hosted on Facebook live, aims to give adults born with a cleft increased knowledge and confidence on their employment journey. Each session, from creating CVs to first days in a new workplace, is full of practical tips, advice and information. Video recordings can be accessed by clicking on the links below.

October: Applying for CVs and Job Applications

Adults Conference

The 2020 Adults Conference was unfortunately cancelled due to COVID-19. However, we are currently working on a virtual conference that will be held on 12th March 2022. This will be an engaging conference with speakers from cleft teams, researchers, adults born with a cleft and much more. More details to follow.

 

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