CLAPA runs regular surveys of our community so we can make sure everything we do is based on the needs of people in the UK affected by cleft.
Here you can find information on some of our past surveys, including reports on the results.
Access to NHS Dental Care
In the lead-up to 2025, we’ve heard from many of you who’ve had problems accessing NHS dental care, especially for cleft-related issues. We wanted to learn more about the kind of problems you’ve been having so we can better understand how to help.
This survey closed with 432 responses, and led to CLAPA’s first public campaign to End the Cleft Dental Crisis.
CLAPA Annual Surveys 2020-2023
During the pandemic, CLAPA ran a ‘snapshot’ survey to understand how the UK cleft community had been impacted. This helped us to adapt our services and design new resources to support their needs. We ran three additional ‘annual surveys’ to see how these findings changed over the years.
Adults’ ‘Whole of Life’ Survey
CLAPA’s ‘Whole of Life’ Survey was a large-scale survey of adults in the UK born with a cleft in 2018.
The survey was a bit like a census. We wanted to know about the whole of life picture for adults, not just about the medical journey. This is important as while someone’s medical outcomes may appear to be good, their cleft may still be impacting on other areas of life (and vice versa). The survey asked questions about topics such as medical journey, education, work, where you live, your mental health, discrimination you may have experienced, family life, dating and relationships etc. These are all areas which the existing research tells us can be impacted upon in different ways for people with a cleft.
It’s findings have fed into several research papers and continue to influence our work with adults born with a cleft.
Research Summary: Treatment Decision Making in Adults with Cleft
Research Summary: Interpersonal Relationships in Adults with Cleft
Research Summary: Emotional Wellbeing in Adults Born with a Cleft
Adult Services Project Roadshow Report
Prior to launching the ‘Whole of Life’ survey, CLAPA ran several in-person workshops across the UK to consult with the adult cleft community about their needs.
Diagnosis of cleft
This 2016 survey looked at parents’ and carers’ experiences of diagnosis. This survey closed with over 1,200 responses. The results fed into two research papers which helped to shape CLAPA’s information and services for parents and carers dealing with a new diagnosis.
Parental views of antenatal testing and termination following a diagnosis of cleft lip
This study looked at parents’ reactions to being offered a termination after diagnosis, and how this might have affected their view of their child’s cleft and their experiences of diagnosis in general.
Breaking the News: Parents’ Experiences of Receiving an Antenatal Diagnosis of Cleft Lip
This study took a broad look at parents’ experiences of antenatal diagnosis to see if there were any practical ways this process might be improved on.