Year Three (2020-21)
March 2018 saw the official start of CLAPA’s 3-year Adult Services Project but due to COVID-19 affecting our work in 2020/21. The Adults Services Project will be extended to 2022.
Interested in what we did in Year One? Access the archive here.
Interested in what we did in Year Two? Access the archive here.
What is it About?
There are an estimated 72,000 people over the age of 18 living in the United Kingdom who were born with a cleft. Historically, attention has been given to parents and families with young children to support them on their cleft journey. In more recent times, we have also seen a focus on older children, teenagers and young people. This work has proved incredibly valuable, however it is important that support is available for people beyond age 18. Understanding and supporting the unique needs and experiences of adults affected by cleft is very important to CLAPA.
From March 2018-July 2021, CLAPA undertook an exciting project looking at improving services for adults who were born with a cleft.
This three year project was funded by the VTCT Foundation, to research and understand the experiences, challenges and unmet needs of adults in the UK who were born with a cleft lip and/or palate (cleft). Much of this research was completed in 2018, and in 2019 by CLAPA’s previous Adult Services Manager; Kenny Ardouin, and CLAPA’s Adult Services Officer; Nicky Davis. Laura Ainsworth, now CLAPA’s Adult Services Manager, will work with Nicky Davis and CLAPA’s staff team to start work reporting back on all the findings, and work alongside partners to develop and implement services designed to address current unmet need and roll these out across the UK. We are continuing to work hard to roll out our services more widely and reach as many people as we can who would benefit from them.
What we did in 2018 and 2019
We undertook a massive survey of adults affected by cleft. Our Whole of Life survey asked adults who were born with a cleft about their thoughts and experiences on medical and health experiences, as well as emotional wellbeing, work experiences, bullying and discrimination, dating and intimacy, genetics etc. We are using the valuable information from this survey to help guide our future endeavours. Thank you to all those who participated in the survey.
We had the incredible opportunity to meet with many of you across the UK in the summer of 2018, and you told us what was important to you as an adult. We’re keeping this front and centre of our minds as we deliver on years two and three of this project. You can read the report here: www.clapa.com/roadshowreport. Do the findings resonate with you?
We also had a wonderful opportunity to meet with many of you at our 2018 Adults Conference in London, and our 2019 Adults Conference in Glasgow. This was a day that was directly informed by the roadshow and survey, with the topics discussed being many of the ones that you told us were important to you.
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 trialled 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.
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.
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 Experiences, Factors 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.
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.
CLAPA is pleased to introduce our new CLAPA cafe. This online social event is aimed at young adults born with a cleft and will address some of the issues young adults may face. A safe space to talk with like-minded people and a place to build confidence and knowledge through sharing experiences. Our first one is taking place 16th October with more to follow.
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.
The 2020 Adults Conference was unfortunately cancelled due to COVID-19. However, we will be working hard to organise a virtual conference in March 2022 for the adult community to enjoy. More information will coming out soon about this event.
What do we hope to achieve?
Now we hope to continue to develop our understanding of the experiences of adults with a cleft and report back on this. We endeavour to deliver on the goals above in the hope that it makes life that bit easier for those adults affected by cleft.
What can I do to help?
As an adult born with a cleft, there are a few things that you can do to help! We want to spread the word about the Adult Services Project as far and wide as we can, and there are a few ways you can help us to do that:
- Let other adults with a cleft in your circles know about the project and what we’re up to this year – share our information about the project on social media, mention it to your GP and dentist, spread the word at your workplace, etc. Remember, since cleft affects around 1 in 700 people in the UK, chances are that everyone knows someone who knows someone with a cleft!
- If you’re considering or currently having further treatment, make sure your Cleft Team know about the project too. Feel free to mention it to them at your next appointment!
- Join the CLAPA Community here (it’s free!)
The Adult Services Team
If you would like more information or to share your ideas, please do get in touch. Also, keep watching this space for more updates!
Adult Services Coordinator
Tel: 020 7833 4883
Email: [email protected]
Adult Services Officer
Tel: 020 7833 4883
Email: [email protected]