VTCT Foundation London Showcase: 8th July 2022

VTCT Foundation London Showcase: 8th July 2022

Engaging Adults to Improve Long-term Cleft Care

As one of the longest-running charities in the visible difference field, the Cleft Lip and Palate Association (CLAPA) has a long history of securing VTCT funding to help further its goals, from conducting feasibility studies to service improvements.

Having concluded its ambitious three-year project into how to engage and empower adults born with a cleft last summer, Claire Cunniffe explains some of the biggest challenges CLAPA faced to best empower people from all backgrounds and ages to access the support they need.

How did your ambitious three-year project come about?

Much of our work historically has been focused on parents, families and young people affected by cleft. And, whilst treatment needs don’t always end when the current specialist care pathway does, it can be hard for adults to know what support is available to them.

Knowing there are over 70,000 people aged 18 upwards across the UK born with a cleft lip and / or palate (cleft), and appreciating how the condition affects everyone so differently – physically as well as psychologically – we recognised there was a growing need to ensure the high-quality support remained in place throughout their cleft journey.

Empowering people to access the support they need is key. And, thanks to our VTCT Foundation, we were able to carry out our Adult Services Project to help us better understand their experience, and ensure we are best placed to implement services that genuinely meet their needs in an ever-changing world.

What was your approach towards the Adult Services Project?

We were adamant that our first year needed to be spent focusing on gathering all the essential data, including building relationships with health professionals and cleft-affected adults to better understand their support needs.

One of the biggest challenges for us was working out how to find the adults and gather their stories. To ensure we had a wealth of data to work from and had heard from a diverse range of people, we put a range of activities into action, from surveys and focus groups to a UK-wide roadshow, which covered 12 cities in eight weeks.

We also worked with local media to reach adults and cleft professionals across the country, and found that of the 100 people who joined us at them, 55% had never been to one of our events before. Critically, some roadshow attendees told us they’d never spoken to another person with a cleft before, which brought added emotional challenges. So not only was this extremely valuable for us, it was also a really big step for them to come along and share their lived experience with us.

What were some of CLAPA’s biggest learnings from the research?

One of the biggest learnings to emerge from our ‘Whole of Life’ survey was that there are a wide range of reasons why adults may be reluctant to re-engage with the cleft care system, and a large number who may not be aware that they are entitled to care.

We therefore devised a Leavers’ Pack which young adults automatically receive when they turn 18. This pack ensure they can continue to access the support they need, find out which NHS cleft team is closest to them, and see what the pathway would be to get back into the system if this was something they wanted to do.

Whilst the packs also contain information about CLAPA’s Peer Support service and Cleft Talk discussions, it also includes a letter explaining how to action an adult cleft referral to help ensure GPs and dentists refer patients directly to their local specialist Cleft Team.

How have the project’s findings affected CLAPA’s services?

Our project overlapped with Covid-19, which also influenced some of our activities. Like many organisations, we moved our services online during the pandemic, which enabled us to run lots of activities that perhaps had not been previously associated with CLAPA, such as our employment webinars.

Hosted by volunteers and run across Facebook Live, the primary objective of these was to help people talk about the reality of their experiences of cleft in the workplace – whether positive or negative – and provide an open space to ask questions, share concerns and exchange tips and advice.

These sessions have been really empowering for many attendees, strengthening the message that they can do whatever they want to do regardless of their cleft. One of the recurring themes that comes through is that people feel more resilient as a result of being born with a cleft, as they’ve often had to overcome numerous challenges and develop coping mechanisms. Through the employment webinars, we aim to build confidence in attendees to enable them to reach their full potential at work.

Perhaps one of the biggest ways that feedback from the adult cleft community has influenced our services was with our monthly Adults Lounge. Created this January, it merged the CLAPA café – originally aimed at giving young adults a safe space to talk – with our long-running CLAPA lounge, which had targeted older adults.

Our research found that the two age groups didn’t want to be segregated as there were far more commonalities between them than differences. Whilst many might assume that younger adults would benefit most from this merger, it’s been wonderful to see how much it’s already helped older members of the group in particular learn about newer treatments.

Ultimately, one of the biggest things we’ve learned through our project is that adults need a reason to connect, and a purpose to come together. And, thanks to the VTCT funding, we’re now in a stronger position to develop new partnerships, reach adults from a diverse range of backgrounds and invest in the support that adults need most.