From March 2018 to July 2021, CLAPA undertook an exciting project looking at improving services for adults who were born with a cleft.
What was the Adult Services Project?
There are an estimated 72,000 people over the age of 18 living in the United Kingdom who were born with a cleft. Most were born before cleft services were centralised at the turn of the century, and may have experienced sub-standard treatment or other issues because of this.
Historically, attention has been given to parents and families with young children to support them on their cleft journey during times of urgent need, such as diagnosis, birth and surgery. 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 the age of 18.
CLAPA wanted to understand the unique needs and experiences of adults born with a cleft in the UK so we could design better support services and advocate for their needs.
A three-year project plan was put together, and with funding from the VTCT Foundation, this project started in March 2018.
What We Did
We undertook a massive survey of adults affected by cleft. Our Whole of Life survey asked adults 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 were pleased to see that adults with no connection to CLAPA or NHS Cleft Teams discovered these days and came along too! It was an excellent opportunity for adults to get to know each other and start creating local support networks.
We 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.
Reporting back to the community
With the ‘Whole of Life’ survey complete, we worked alongside our friends at the Centre for Appearance Research to produce four academic papers that the health professionals working in the field of cleft can access. These papers were published in academic journals, and summaries are available for the community 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.
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 learnt 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 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 now available in Cleft Teams across the UK and you can request a copy or download digital resources 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 is now one of our most popular and impactful services for adults. You can request to be put in touch with a trained adult volunteer at any time.
Adult Services are now a core part of CLAPA’s work as we continue to take action around the issues raised during the Adult Services Project. You can read more about our plans in the Adult Services Strategy.
We are delighted to announce that our application to the National Lottery Community Fund was successful and that they will support our Adult Services for three years from 1st July 2023!
This new funding will allow us to continue delivering all of the things that have proved popular and effective among the adults in our community while also introducing some completely new ideas.