Year Three (2020-21)
March 2018 saw the official start of CLAPA’s 3-year Adult Services Project. Read on to find out more about the project and how you can get involved.
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 is undertaking an exciting project looking at improving services for adults who were born with a cleft.
This is a three year project 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, the Adult Services Manager; Kenny Ardouin, Adult Services Officer; Nicky Davis, and CLAPA staff team started work to report 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 in 2019 and 2020. Now, in the final year, we are working hard to roll out our services more widely and reach as many people as we can who would benefit from our services. At the end of the three years, we are hoping to gain funding to continue the delivery of the services.
What we’ve done so far
Here’s a recap of some of the things that 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 is currently being trialled with selected Cleft Teams across the UK ahead of a launch of the final version of the pack in February 2021.
The Final Year (2020/21)
In Year Three, we want to work closely with the NHS to continuing to develop services for adults, of course, within the resourcing constraints faced by both CLAPA and the NHS.
Reporting back to the community
Although we’ve already reported back on the roadshow and preliminary survey findings, we have a lot more detailed information from the survey yet to come.
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. We have four papers already submitted to academic journals, and are writing two more. Alongside this, we are developing summaries for everyone to read. Watch this space!
Cleft Talk Panel Discussions
Cleft Talk is back for a second season! Join us on the lastWednesday of each month where we’ll cover even more of the topics that you told us are important to you. In 2020, Cleft Talk features solely as a podcast. Find out more, join the conversation, submit your questions and listen back on past discussions here. You can listen to the discussions on our website and Facebook page, or if you’d prefer, listen to the programmes for free on Spotify, Apple Podcasts or SoundCloud – all from wherever suits you at whatever time you like!
Launching the Leaver’s Pack
We’re very excited to be launching the final version of our Leaver’s Pack in early 2021! Currently on trial with selected Cleft Teams, as well as being able to be requested online, the Leaver’s Pack will be a useful resource for adults who were born with a cleft, as it contains information to answer the commonly answered questions people might have regarding cleft in adulthood, as well as a map to help you find your nearest Cleft Team, a referral pathway and letter for your GP/Dentist to help you get back into the Cleft Team more easily in the future, as well as other additional information about the Adult Services Project.
If you’re lucky enough to be one of the people who gets to trial the pack, please make sure you complete the survey to give us your feedback for the final version – we’ll even give you a £5 Amazon voucher for your time!
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.
The 2020 Adults Conference was cancelled due to COVID-19. The 2021 Adults Conference is planned to be held on Saturday 3 July in London. Check out www.clapa.com/ac2021 for more information.
What do we hope to achieve?
In the final year, 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, and set the project up in a way that makes sure we keep the momentum, even once the current funding ends in July 2021.
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’s 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!
- Submit your questions for the Cleft Talk panel discussions throughout the year, and be sure to tune in each month.
- Consider joining the Adults Representation Committee.
- 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 Manager
Tel: 020 7833 4883
Email: [email protected]
Adult Services Officer
Tel: 020 7833 4883
Email: [email protected]