Society president talks to CLAPA ahead of ground-breaking conference
The 40th annual Craniofacial Society of Great Britain and Ireland (CFSGBI) Conference will have a very different feel this year – with more than 30 people with lived experience of cleft involved in the programme.
Starting tomorrow, in Newcastle, the three-day event will be attended by Society members – healthcare professionals working with cleft – and many others involved in the cleft community.
CLAPA will be there, and our chief executive Claire Cunniffe will be giving a presentation update on our services, as well as talking to the various Clinical Excellence Networks in attendance.
Consultant orthodontist Rye Mattick, the Society’s current president and conference chair, and her colleagues at Newcastle NHS Northern and Yorkshire Cleft Service, have dramatically increased patient/ service user input at this year’s conference in a variety of ways – from focus groups to chairing research sessions.
Rye said: “Usually, there’s a presentation at conference on a life journey with cleft, which always causes quite a stir in the audience.
“This year, as well as lived experience presentations, all of the sessions will have someone with a direct involvement of the lived experience – as a service user or parent/ carer – talking about their life challenges and successes.
“There’ll also be a team of adults who were born with a cleft chairing the conference sessions. These are conference firsts – I’ve never seen every session include lived experience, or service users as chairpersons.”
“There’ll also be a team of adults who were born with a cleft chairing the conference sessions. These are conference firsts – I’ve never seen every session include lived experience, or service users as chairpersons.”
Lead consultant orthodontist
Rye has been the lead consultant orthodontist for the Newcastle NHS Northern and Yorkshire Cleft Lip Service since 2022.
“I was inspired to work within the field of cleft when I was training as a very junior surgeon, and realised what a valuable service it was as a part of orthodontics. I love that you see people from when they’re babies through to adulthood.
“A lot of what you see about orthodontics in the media is all about glamour, aesthetics, and having a good-looking smile on Instagram. I am uncomfortable with that, and it’s not what I went into orthodontics and dentistry for.
“It’s a privilege to work with a group of service users where you can make a real difference. It’s fantastic, and well worth getting out of bed in the morning for.”
NHS Cleft Teams
Rye said the development of NHS Cleft Teams, with psychologists onboard, has helped fuel more attention on the service user voice.
“I think there’s been a big sea change in the time I’ve worked as a consultant in the NHS – realising we should be doing things for people, not to people.
“In cleft care teams, I think we’re particularly tuned into people’s journeys because of the huge involvement with psychology, which brings a whole new focus to what we do.
“The psychologists, and specialist nurses, keep us clinicians straight – and make us really think about what happens outside the clinic between visits, such as what’s going on in school, the service user’s self-confidence, etc.”
“The psychologists, and specialist nurses, keep us clinicians straight – and make us really think about what happens outside the clinic between visits, such as what’s going on in school, the service user’s self-confidence, etc.”
Around 20 years ago, Rye spoke at an international conference in London with one of her former service users, during a CLAPA presentation.
“It was such an eye opener, because when the service user was born in the 1970s, psychologists didn’t exist in cleft care. It really made me realise how different cleft care is now to when I first trained, much more service user centred.
“I’ve always liked to think I see my patients as people, but that involvement with the CLAPA presentation really made me see we have to think about what happens to people outside of clinic.
“I’m delighted CLAPA will be at the CFSGBI conference again this year, its presence is so important. We use CLAPA content all the time in our clinics.
“The service user voice has been evolving now for decades. This year’s CFSGBI conference will reflect those changes, and I think it will be widely appreciated.”
Conference focus groups and service user chairpersons
During the run up to this week’s conference, the Newcastle NHS Northern and Yorkshire Cleft Service’s psychologist and nurses set up and ran service user focus groups, to check in and ensure the conference programme was heading in the right direction.
Throughout the conference, five former service users in their late 20s to early 40s, will be managing the programme, by chairing each conference session alongside a clinician.
“These are adults who’ve very much left the cleft clinics behind, and are working in all sorts of professions. They’re all used to standing up and speaking in front of people. They’re not there to discuss their experience, they’re there in a conference management role.
“We wanted to show being born with a cleft is not all about barriers and traumatic or emotional journeys. It’s also about getting on with your life.”
“We wanted to show being born with a cleft is not all about barriers and traumatic or emotional journeys. It’s also about getting on with your life. If you had your eyes shut you wouldn’t know the chairperson was the person with the lived experience.
“They’re chairs, not vice chairs, with all areas of responsibility that normally go to CFSGBI members, including managing and choosing questions from the audience. The dynamic might affect the way people ask questions, and how questions are picked.
“This has been one of the highlights of the conference for me – to meet up again with some of my child service users as fully functioning, and very successful, adults.”
Happy Birthday CFSGBI!
The four conference themes this year are Celebration, Ambition, Reflection and Excellence – spelling out CARE. And because it’s the society’s 40th anniversary this year, the first word will also celebrate its birthday.
“It seemed a happier theme in these miserable times for NHS funding, when times are hard within the health service, and for a lot of people at home. We want to try and make conference a little bit upbeat.”
After the conference speakers and discussions, they’ll be a dinner with birthday competitions and prizes.
The evening’s entertainment will include a young dancer, Charlotte, who was born with a cleft, and is studying professional dance in London. Charlotte will be dancing in CLAPA’s distinctive blue and white colours.
Rye smiled: “We’re really looking forward to seeing Charlotte, and to celebrate our 40th birthday in style with such a strong and supportive – and constantly evolving – society and community.”
For more information on the CFSGBI and this year’s conference visit craniofacialsociety.co.uk
Thank you to Rye
Thank you to Rye for sharing her story with us.
Read more about CLAPA research opportunities here
