A Successful Showcase

On Friday 8 July nearly 40 Appearance Collective members and grant holders came together in London’s Toynbee Hall for the first in-person VTCT Foundation Showcase since the pandemic took hold.

Despite the summer heat, the action-packed agenda provided a welcome opportunity for attendees to discuss the fresh progress made in the field of visible difference over the last year. From updates on what charities have been doing on the front-line to the newest research findings and best practice ideas, it was a genuine pleasure to see friendly faces and network in real life again after two years of virtual Showcase events.

“The beginning of the end” for VTCT Foundation

As one of VTCT’s founding trustees, Rosanna Preston kickstarted the event by explaining how the Foundation has continued to fund a variety of organisations of all sizes and how the day would provide a great opportunity to see how some of their funded projects have come to fruition.

With around three years left for the foundation’s funding, she made it clear that VTCT are increasingly keen to welcome more modest, innovative applications that will give small charities a chance to try new things, whether via seed funding or pilot projects.

Morning presentations

First to the stage were Heather Blake and Sam Cheatle from Changing Faces, to talk about how their VTCT funding is enabling them to lay the groundwork for their five-year New Ways of Working project. With VTCT’s support, the charity has been able to digitise their admin processes, improve user experiences and increase their UK reach by expanding their online peer group chat service.

They explained how the funding has already helped them run five groups for 32 participants since the grant started in March 2021, with a sixth session already underway. Best of all, it seems offering clients two different ways to connect online through these sessions – webchat or video call – has really helped people open up, with 83% of group members reporting an improvement on how well they were coping with their appearance-related concerns at the end of the peer group sessions.

Next up were Dr Jenny Cropper and Dr Katie Hamilton from the Oxford Facial Palsy Service at John Radcliffe Hospital to reveal how – and why – they’ve been developing psychological self-help resources for people living with facial palsy. With faces playing such a key role in how we express ourselves, they explained how misinterpretation during everyday social interactions can cause enormous distress.

Having established that psycho-education was key, and that information must be accessible across a variety of channels, they designed a series of guides that used information gathered from people with lived experience to provide practical advice that helps anyone with facial palsy manage their anxiety in any given moment.

The final talk of the morning came from CLAPA’s Claire Cunniffe on how, thanks to VTCT funding, they’ve been able to invest in a new staff member and make a massive shift in the way they work as well as their efforts to engage and empower adults born with a cleft.

Claire explained how the first year of CLAPA’s ambitious three-year project had been spent building relationships with health professionals and Cleft-affected adults, using roadshows and focus groups to gather first-hand stories and ascertain the biggest support needs. It was especially interesting to hear how, by listening to client feedback, they merged their virtual café and lounge services and discovered the benefits of providing greater opportunities for each age group to learn from each other.

With the VTCT Foundation having recently launched a new funding stream for clinical fellowships, Trustee Wendy Edwards introduced the first two award recipients. Kate Tanner and Steve Twigg were then invited to share a few words about the research work the funding will begin supporting this autumn.

Finally, before breaking for lunch, Chair Tony Lau-Walker took the opportunity to reiterate how the VTCT Foundation may be coming to an end but wants to leave a real legacy for the sector, with an emphasis on getting more organisations working together.

https://vtctfoundation.org.uk/vtct-foundation-seeks-additional-trustees/

Afternoon sessions

After a re-energising networking lunch, Wendy Edwards returned to the podium, this time with her Headlines Cranofacial Support hat on, to present the group’s newest video. Produced with the support of a small VTCT grant, the short video showed parents of children with craniosynostosis – including Wendy – discussing how it feels to have a child born with a relatively unknown condition, and conveyed very effectively the challenges of getting a medical diagnosis.

Following on from earlier group discussions about the challenges of reaching and engaging certain target groups, Kerry Montgomery from Alopecia UK and Fabio Zucchelli, The Centre for Appearance Research (CAR), discussed how they used their VTCT small grant to better understand the support needs of men with alopecia.

Their project actually came about following a chance discussion at a previous VTCT event, and they explained how CAR’s research has informed the delivery methods used by the charity, including the production of more gender-relevant products. Attendees then enjoyed an exclusive preview of Alopecia UK’s new video, which highlights the male-specific challenges of hair loss, and brings to life exactly why it’s so valuable to get men together to discuss their situation.

Yvonne Wren, from The Cleft Collective Cohort Studies, then set the record straight on how adolescence is not always a time of unbridled happiness and how teenagers living with a visible difference have additional challenges to contend with at an already turbulent life stage – particularly from a psychosocial perspective.

Her presentation talked about the impact of visible difference over time, from how the way a baby looks can alter not only how people respond to it but how parents relate towards their child in that early phase, to how surgery can disrupt jaw growth. With nearly 10,000 participants from 3,570 families, the research programme has the world’s broadest data set of children born with cleft – an invaluable resource which Yvonne encouraged other groups to access.

The Oxford Clinical Genetics Group has been investigating the causes of malformations that affect the skull and face for almost 30 years. Three members of the team – Associate Professor Steve Twigg and DPhil students Becky Tooze and Yang Pei – gave attendees a topline overview of some of their most recent work in the craniosynostosis field.

One of the biggest stand-out messages from their fascinating presentations was why genetic diagnosis is so important; essentially because it has medical implications, can end a long diagnostic odyssey and can lead to better counselling.

Finally, in the last session of the day, Dr Ella Guest and Maia Thornton from The Centre for Appearance Research (CAR) explained how CAR has been one of the biggest recipients of VTCT funding since 2017, with its work is driven by the Appearance Collective charities.

Having collaborated with many of the people at this year’s London Showcase during the initial five-year VTCT partnership, they talked through some of their key findings and the nine biggest priorities for the second stage, set to start in September. In particular, the next phase will include a greater focus on underrepresented groups and will also incorporate more educational campaigns on social media channels to increase acceptance of diversity while reducing stigma.

In addition to all the progress updates, there was a lot of practical discussions throughout the day across a wide range of topics between audience members – always one of the most important aspects of our Showcase events.

During these conversations, attendees shared their experience of transferring services online over the last few years, the pressures of ensuring reaching diverse cultures across different languages, and the ongoing challenge of engaging adults who may never have accessed specialist support before.

Most of all, the opportunity for debate really highlighted the benefits of being together in person once again.