I have been to many conferences over the years, first as an observer, and in more recent years to present my own research findings from the teams that I have been working with. However, this was my first International Cleft Congress – the global conference for all things related to cleft, attended by approximately 1,500 delegates from over 100 countries around the world – so I was very excited to literally be able to showcase my work on the world stage.
The conference was a jam-packed week-long event with a seriously impressive programme, looking at the various considerations for cleft in all corners of the planet – from how to build capacity in Low and Middle Income Countries, to the risks and benefits of particular surgical and orthodontic procedures, to controversies in Speech Language Therapy, as well as sharing the latest knowledge on how cleft impacts on the emotional wellbeing, as well as the physical.
The Monday Free Paper Sessions
The psychological impact of cleft, and understanding what this journey is like for the individual and their family who are actually living with cleft everyday is where most of my enthusiasm resides! It was fantastic to see this be a major feature of this Congress and for the recognition that cleft is far more than a paediatric condition that is easily remediated with no long-term consequence. It was really exciting to be here and present two oral papers on my work representing my previous role in the Adult Services Project at CLAPA, as well as to present on my Master’s study from the University of Canterbury (for those of us in the cleft world, this 4-yearly Congress is like our version of the Olympics, so it was also an honour to be one of just four people representing Aotearoa New Zealand in the sport of science – which is great for me given I’ve never had much of an inclination towards our national sport of rugby). It was wonderful to be able to present these two pieces of work in the Monday Psychology session back to back, but also in the company of so many esteemed colleagues doing similar work around the world, and agreeing with me when I say we need psychology access for all, and that a cleft service is not complete until you can access it at any age. Clearly, we have a long way to go still, but it is reassuring to know I’m not screaming into a void and that my findings have been corroborated by others.
The Panel Discussions
Not only was it a fantastic opportunity to be able to present my work in the free paper sessions, a real highlight of my time at the Cleft Congress was to participate in two panel discussions (and in one case, even co-chair a panel)! Being a part of panel discussions at a conference was a first for me, and was both exciting and nerve-wracking. Like many things in healthcare, there was the opportunity to “see one, do one, teach one”, with me getting the opportunity on Monday afternoon to be a panellist on a panel discussing the roles, models and challenges for cleft support groups. It was a pleasure to take to the stage with a large panel of delegates from around the world and to share our collective insights and knowledge to affirm the valuable role that peer support and support groups play in the cleft journey, as well as to share ideas of how to provide support even in low resource environments (provide a space for people to meet and an ice breaker conversation and then in my experience, the rest tends to happen organically).
The highlight of the conference for me however, was the Thursday afternoon panel discussion Experiences of Living with Cleft, which I had the privilege to co-chair and was joined by my expert colleagues Dr Amanda Bates and Danielle McWilliams – two fellow experts by experience, as well as both having an academic background and interest in cleft. This was the first time that patient voice was so poignantly included in the programme for the Cleft Congress and we were invited to be “constructively controversial”. While it is not entirely new to have patient voice at such conferences – often there will be a short appearance by an invited speaker, this is the first time where it’s been as much a part of the programme as any other panel discussion with the intention of genuine inquiry to better understand what life is like for those of us born with a cleft.
It was great (albeit not always easy!) to be able to talk so candidly about the aspects of our cleft journeys that have gone well, as well as the areas where there is room for improvement. We appreciated the opportunity to also reflect on possible reasons why those with lived experience still in 2022 are not diversely represented at conferences such as these. Financial, accessibility and emotional support barriers were some hypotheses offered. It was heartwarming to be able to share some of our more difficult life experiences (and some of the lighter, amusing ones too) to a room that was supportive, empathetic and keen to learn more. We certainly appreciated all the words of encouragement at the end and that although this panel may be a first at the International Cleft Congress for patient voice, that it certainly won’t be the last!
A Whirlwind of a Week!
These are just a few highlights, of course, catching up with friends and colleagues around the world over breakfasts, lunches and dinners was also a huge boon to my week (not to mention being able to travel internationally again and escape the New Zealand winter for some beautiful Scottish summer) – I can’t believe how quickly this Congress went by. Thank you to everyone who decided to buck the trend and give patient voice more of a platform – please keep doing this! Thank you especially to my co-panellists who gave up their time, knowledge (and money) to be here, there’s no way the panel discussion would’ve had nearly the same impact were it just me up there, and thank you to everyone who came and saw my talks/panels and took the time to come and chat with me – connecting and reconnecting with all of you made my week and was worth travelling halfway around the world for! I look forward to seeing you all again at the 15th International Cleft Congress in Kyoto, Japan in 2025! Mā te wā.