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Summary of Lived Experience Panel: Cleft 2022, Edinburgh

The experiences of living with cleft panel was an opportunity for our panel featuring people with lived experience of cleft to share their observations and knowledge of what it is like to grow up with cleft. The panel discussed candidly some of their personal challenges, and discussed how despite having received good cleft care, cleft still impacts upon them in different ways, well into adulthood.

This article was originally written for the Cleft 2022 Panel Transactions publication.

Areas of Consensus:

Cleft is considered to be a lifelong condition, which continues to influence people with a history of cleft. This was often prevalent during social interactions, particularly when meeting someone for the first time. The panel discussed that cleft teams were generally supportive, although the importance of shared decision making and supporting patients’ empowerment was discussed – including the take-home message of “nothing about us, without us” (Chu et al., 2016). The panellists encouraged clinicians working with cleft to invest the time in understanding the holistic life goals and experiences of their patient, and seeking the patient’s perspective on the priority they place on treatment, or proposed treatment.

Panellists discussed the instances of discrimination that they had faced, for example being overlooked in the workplace, or having someone else define them by their cleft, rather than their relevant skills and experience.

Alongside the recognition of cleft as a lifelong condition, the panel discussed the importance of availability of lifelong care in recognition of some of the unique challenges that may arise later in life.

Remaining uncertainties/challenges:

The panel discussed the uniqueness of the lived experience panel within the conference programme, and how it is encouraging that more emphasis is being placed on understanding cleft from the patient perspective and incorporating patient voice into clinical decision making. However, the inclusion of lived experience within the International Cleft Congress is something that is still quite novel and separate to the main conference programme. The panel (and the audience!) discussed the importance of continuing to expand the reach of patient voice throughout the congress and working towards experts by experience being a routine partner in presentations and research as well as helping to share the conference programme with the cleft community.

The panel also discussed the challenge of obtaining patient perspective from a diverse range of patients. The panel discussed that there is a bias towards well-educated, articulate members of the community who have both a personal and professional interest in cleft, and a level of confidence to communicate in scientific settings such as conferences. The panel discussed that continuing efforts should be made to capture a more diverse range of views from throughout the cleft community. This includes removing potential barriers to participation such as the travel and accommodation costs associated with attending the congress, as someone with lived experience likely does not receive financial support from their employer to attend.

Suggestions for Kyoto 2025:

The panel would love to see patient voice continue to be championed at the Kyoto 2025 congress with patient voice firmly entrenched into the agenda. There is good evidence that adopting a “nothing about us, without us” approach to a conference increases the conference’s reach and engagement with the wider community and society (Chu et al., 2016). One tangible way that patient partnership can be included in Kyoto 2025 could be a similar scholarship scheme that was introduced for delegates from Low-and-Middle-Income Countries to attend Cleft 2022. Additional steps to make the conference welcoming for the cleft community include ensuring that the expectations of both the patient representatives and the expectations of the other delegates align, and that the emotional needs of patient representatives are well supported (Tay, 2020). With these suggestions in mind, it would be fantastic to see the momentum from Edinburgh continue with representatives of the cleft community from around the world supported to meaningfully attend and participate in the ways described here.


Chu, L. F.; Utengen., A; Kadry, B; Kucharski, S E; Campos, H; Crockett, J; Dawson, N; Clauson, K A. (2016). “Nothing about us without us”-patient partnership in medical conferences. BMJ, 354.

Tay, A. (2020). Make scientific meetings a welcoming place for patient partners.

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