Cleft 2025 in Kyoto

Talks

21 October 2025 | The International Congress on Cleft Lip and Palate and Related Craniofacial Anomalies

Panel: Perspectives in Global Cleft Care at the Intersection of Evidence, Innovation, and Lived Experience

Oral presentation: Patient-led Research: Novel Case Study Exploring Clinician-Patient Power Dynamics through Linguistic Discourse Analysis of a Paediatric Cleft Orthodontic Visit

This has to be one of the highlights of being born with my cleft, and something I could never have imagined in my wildest dreams, even after launching this website!

I was invited to attend Cleft 2025 in Kyoto as a patient panel speaker and to present research I'd completed at university.

The International Congress on Cleft Lip and Palate and Related Craniofacial Anomalies is a global conference, held every four years. It brings together cleft specialists across disciplines from around the world to connect, share knowledge and advance cleft care globally.

CLEFT2025 saw around 1,400 individuals from 96 different countries attend the 5-day event held in Kyoto. It was an amazing experience to attend this conference. I found it so inspirational to see cleft teams from so many nations coming together to help people born just like me.

I spoke at two events during the conference. The first was on a lived-experience panel where Dr Alejandro Gonzalez, Smile Train’s Country Director for Mexico, asked questions of myself, Joshua Flores and Ashim Garg.

My co-panellists were very impressive with Ashim founding Sirat,a non-profit that enhances cleft communities in India, and Joshua who's now a Smile Train Programme Manager in the Philippines (including managing Smile Train programmes at the hospital where he received treatment).

We shared various parts of our experiences, focusing on some key aspects, including:

• Uplifting patient voices as partners in treatment - that guide and inform treatment paths in order to achieve individual success. This also includes determining when an individual feels they have 'finished' their treatment - something which is subjective in cleft care, unlike other medical conditions.

• Tailoring treatment to the individual - just because a team can provide treatment, that doesn't mean the treatment is right for that individual. For example, I spoke about my decision to have my final lip operation, but not to have any speech surgery. I knew what the options were, and with my team I was able to work out what was right for me.

• Tailoring support for the individual - Ashim spoke passionately about the importance of creating communities in India to uplift patient voices. I agreed community is very important but that unfortunately for me, we had communities in the UK when I was growing up but I couldn't face interacting with them due to my psychological difficulties accepting my cleft. Other forms of support, like seeing images online and confiding in close family and friends, helped me - showing again that everyone will have an individual journey.

The audience were incredibly receptive and I felt honoured that we had this global stage to share our experiences and be heard by so many clinicians.

After the panel, I went to present some research I'd completed at university.

It was during my studies that I learned about the many difficulties of patient-doctor communication. I decided to record an appointment with my orthodontist and conduct a discourse analysis (exploring linguistic techniques and structures that enable power and knowledge sharing through communication).

My research showed that my orthodontist had a lot of power in the consultation, but she used it to facilitate power sharing through the way she communicated (i.e. discourse devices). For example she would mirror my language and say 'we' rather than 'you' to help create a sense of joint ownership and empowerment. Her style of communication enabled me to feel listened to and empowered. It was amazing to be able to share these findings alongside other impactful research studies and presentations at the conference.

Please feel free to contact me if you are interested in learning more about the research, including methodology, findings and applications: bethscleft@gmail.com

Throughout the week, I enjoyed meeting more cleft teams at various receptions and events. One evening, I was speaking with a cleft psychologist from Oxford and I made a joke about Oxford vs Cambridge treatment teams competing.

He made a really lovely remark about the professionals who choose to specialise in cleft - it's a team discipline. No singular specialist can treat every challenge a cleft presents. If you wanted to 'take all the credit', cleft is not an area you'd enjoy working in. Egos are rare and the collaborative nature of the specialism is what draws many like-minded professionals to it.

Also, the long-term nature of cleft (usually treatment spans 20+ years) means you have to 'pass the baton' as by the time you've qualified to help those born with a cleft, it's unlikely you'd see a patient through from being born to over two decades later when their treatment journey may be finished.

As always, I enjoyed catching up with the Smile Train team - hundreds of colleagues and partners from around the world were in attendance. I particularly enjoyed hearing how their programmes benefit people beyond cleft.

For example, they've been working on oral health programmes that encourage a culture of brushing teeth - not just for cleft-affected children in certain regions, but for parents, siblings and schoolmates to take up the habit too (in order to support and encourage cleft-affected individuals).

Therefore they aren't just improving the lives of those born with a cleft but whole communities too. There were countless other examples of this sort of passionate, life-changing work, and you can read more about this on Smile Train's website, where you can also read more about the conference too.

I'd like to thank Smile Train, Nazan Adali and Tim Newton for supporting me in attending the conference. It was an eye-opening, uplifting event that I am so honoured to have been a part of.

If you have an opportunity coming up that you think might benefit from a ‘patient perspective’ talk, please feel free to email me at bethscleft@gmail.com.