VTCT Foundation Showcase – 12th July 2024
On Friday 12 July, over 30 Appearance Collective colleagues gathered in central London for the VTCT Foundation’s annual grant holder showcase event.
As well as providing an opportunity for charity members and researchers to network, this year’s agenda was focused around three themed strands that resonated with all attendees. The event began with a focus on how projects can be successfully dovetailed to enhance NHS provision, there was then a session on some of the research that is being funded by the Foundation and the day finished with discussion of the importance of campaigns and achieving cut-through to raise awareness of appearance-altering conditions and the charities supporting them. A selection of photos from the day can be accessed VTCTF London Showcase – 12 July 2024 – Google Photos
Looking ahead: The VTCT Foundation Strategy 2024-27
Welcoming everyone to Toynbee Hall, VTCTF Chair Tony Lau Walker explained how – after many years helping advance the visible difference field – the Foundation’s new strategic plan makes it clear which kind of projects it supports and how it plans to do this.
Integration: complementing and supplementing the NHS
Kate Naish, who became CEO of the Katie Piper Foundation in summer 2023, was first to the stage to discuss how VTCTF’s funding allowed them to spend valuable time consulting with the NHS. Having joined during a year of big changes, she explained how the charity had always worked collaboratively with the NHS to avoid duplicating work, but recognised there was an opportunity to identify service gaps and, in doing so, help clarify its core purpose. This listening process helped the Katie Piper Foundation understand how it could take survivors beyond existing services to deliver the best possible outcomes tailored to individual needs, including redefining the referral process and rehabilitation pathway through a more a holistic approach, and communicating its services more effectively.
“VTCT made it possible for us to take the time needed to consult, work out who we are, what we do and where we’re going. Having the space to pause, reflect and refocus on what we do will be key to ensuring our service is sustainable going forwards.”
Kate Naish, CEO, Katie Piper Foundation
The importance of investing efforts to complement NHS provision was reinforced by Karen Johnson, co-CEO of Facial Palsy UK, in her presentation about the new app and website they have been developing for health professionals. With other treatments prioritised by medics during the pandemic, the long-term complications resulting from a lack of early care – including the psychosocial impact – actually increased the overall treatment cost to the NHS. Acknowledging the need to increase specialist knowledge of facial palsy, the charity therefore set out to find a way to ensure both treatment and messaging given to patients was correct as well as consistent.
The result was the creation of two resources, the first being a website resource that is free for medical users to ensure adults and children with facial palsy are given the right support at the right time. This was complemented by a patient-focused app which is set to launch later in 2024. The app aims to empower those with facial palsy to self-monitor, track symptoms, access support, develop a personalised recovery plan and self-advocate in appointments. And, whilst recognising an app won’t be accessible to all, the data collected will ultimately benefit all patients.
Karen also explained that the app’s flexible framework was developed to enable wider distribution, so it could potentially be used as a hub for other conditions. Any interested charities keen to find out more should contact Karen directly.
“The aim of our app was to bridge the gap for patients and create a sustainable model where patients have access to balanced information at each stage without being given false hope – especially at the early stages, when support and access to care is often lacking.”
Karen Johnson, co-CEO, Facial Palsy UK
https://vtctfoundation.org.uk/wp-content/uploads/2024/08/Facial-Palsy-UK.pdf
Rosanna Preston, VTCTF Trustee, then led a constructive Q&A about the shared experiences of NHS relationships for charities in the visible difference arena, and how the voluntary and statutory sector must work together. The lively discussion flagged why it’s so essential to avoid being negative about NHS provision by recognising commonality, building trust, investing in advocacy work and making resources available that are written clearly and, importantly, backed up by research.
Research in action
This provided a timely segue to the beginning of the day’s research-focused sessions. Professor Nicky Rumsey, trustee of the VTCTF, chaired this session on research.
Julie Davies, PhD student at Staffordshire University, explained how – after 20 years as a speech and language therapist with people with cleft palate – she applied for a senior research associate position to build on her MSc research and help her patients. This led to her current VTCTF-funded project, which seeks to improve the self-image of young people born with a cleft by using young people as co-researchers. Her doctorate is giving these young people a platform to share their personal experiences via a photographic exhibition and two videos – one targeting clinicians, and the second empowering young people to feel good about their self-image.
“Having young people involved who know first-hand the impact social media comments can have on their self-image was crucial in giving a visual demonstration of what it’s like to live with cleft.”
Julie Davies, PhD student, Staffordshire University
Professor Diana Harcourt from the Centre for Appearance Research (CAR) gave an overview of three new CAR projects. Firstly, she shared that CAR is in the process of creating a new online hub to share the many resources and interventions they’ve developed, and this will be launched in July 25. She then highlighted two opportunities for AC members to get involved:
- research into the intersection of experiences, stigma and support for LGBTQIA adults with visible differences – contact maia.thornton@uwe.ac.uk
- a project that is seeking more young people aged 13 to 17 to evaluate how adults and young people with visible differences use social media – contact ella.guest@uwe.ac.uk
Three current projects funded by the VTCTF were then shared.
Dr Maia Thornton, Senior Research Fellow gave an overview of CAR’s new Parenting Toolkit; a generic resource for parents and carers of children with a range of different appearance-related conditions which will be freely available later this year. Designed to promote psychosocial adjustments, the evidence-based e-workbook contains lots of practical exercises and advice, from how to manage challenges to signposting. CAR hopes it will also help parents understand how they can balance looking after themselves and address the difficulties they experience, as well as those of their children.
“The response so far has shown that people find it validating to know that they are on the right path, and it helps them manage what they are feeling and experiencing. That the toolkit is having a positive wellbeing impact shows how important evidence-based resources are.”
Dr Maia Thornton, Senior Research Fellow, Centre for Appearance Research
Dr Kerry Montgomery, Research Fellow, then took attendees through the sensitivities for adults with an inheritable visible difference as they explore their reproductive options, and the need to develop appropriate resources at this big life stage.
She highlighted the limited information currently available to them, the need to better understand how experiences differ for different ethnic groups, the LGBTQIA community and men, and the lack of awareness amongst healthcare professionals, despite how far genetics has come in the last ten years.
Clare Clement, PhD student, presented on the ACT It Out app-based course to help adults who look different live a fulfilling life. She gave a brief overview of the skills-based Acceptance and Commitment Therapy approach which aims to build skills to manage the psychological and social challenges associated with appearance. Designed as a self-guided multimedia toolbox of different activities, including tailor-made mindfulness exercises, the free app allows people to choose their values and set goals, with case studies helping offer a sense of commonality and real-time feedback.
Integration: Complementing and supplementing the NHS
The last two talks of the day focused on how projects can influence public awareness and acceptance levels, starting with a new public-facing campaign from Changing Faces.
“There’s lots of catching up to do to get societal prejudices around visible differences into the public consciousness. The VTCTF funding has allowed us to think and plan slightly longer term than just year to year, contributing to our ability to plan.”
Heather Blake, Chief Executive, Changing Faces
The charity’s Chief Executive, Heather Blake, and Head of Communications, Campaigns and Digital, Andrew Smart, gave an overview of how they hope to encourage awareness and acceptance of those with visible differences by challenging stereotypes, channelling stretched resources where they can make the biggest impact. By connecting with opinion formers who set the national tone, sharing compelling stories that can increase public understanding, and by using insights to target audiences that are more open to influence, they hope to normalise appearance-related differences and inspire more informed conversations.
“We can’t underestimate the value of partnerships. We share so much in common, it would only be to our benefit to amplify our messages together.”
Andrew Smart, Head of Communications, Campaigns & Digital, Changing Faces
Dr Hannah Saunders, a Visiting Research Fellow in Law at Queen Mary University of London, and Phyllida Swift, CEO of Face Equality International, outlined the training they’ve developed to change public perception in the workplace. The EDI Training Programme is split into two different interactive sections; lunch and learn sessions to break down barriers between colleagues, and HR workshops that focus on the policies and procedures that make work environments more inclusive. With the first phase focusing on the UK, their vision is ultimately to help companies and individuals across the world understand what they can do to better support employees with visible differences.
“We identified a hidden HR issue – employers were unsure what constitutes good practice, so ignoring issues had become preferable to risking offending anyone. Our training sets out to increase awareness and ensure employees with facial differences are supported.”
Dr Hannah Saunders, Visiting Research Fellow, Queen Mary University of London
Face Equality International Presentation
The day concluded with an animated discussion around the VTCTF Legacy Project, with a focus on whether Appearance Collective members were keen to continue working together and how this might best be achieved. Whatever the future holds, what shone through was how there’s so much more to unite rather than divide charities, researchers and clinicians working with visible differences, and that this remains the biggest strength of the Appearance Collective.