CLAPA’s 3-year Adult Services Project runs from March 2018 – February 2021. Read on to find out more about the project and what we got up to in Year Two of the project.
Interested in what we did in Year One? 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-February 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 worked 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. At the conclusion of the three years, should the project prove successful, funding would be sought 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 2019.
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. We have worked alongside our colleagues at the Centre for Appearance Research to produce four academic papers which the health professionals working in the field of cleft can access. One of these papers has already been published here.
We also presented our findings back to the health professionals at the Craniofacial Society of Great Britain & Ireland Conference, the European Cleft Palate Craniofacial Association Conference, and the British Association of Plastic, Reconstructive and Aesthetic Surgeons (BAPRAS) Conference. These were great opportunities to share the key findings from our work.
In Year 3, we’ll be doing more work to share these findings with a wider audience, and to make sure we feed back to you too!
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 October.
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. Our peer support service supported many more people in 2019.
We held another Adults Conference on September 14 2019. The conference was held in Glasgow. Thank you to all those who attended and contributed to making the day a success. Check out www.clapa.com/ac2019 for more information.
What did we hope to achieve?
In the second year, we hoped to continue to develop our understanding of the experiences of adults with a cleft and report back on this.We like to think through our various projects and programmes that we’ve managed to do that in Year 2.
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!)
Posters and Leaflets
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]