About the Annual Survey 2023
On this page, we explain why we’re asking the different questions included in the 2023 Annual Survey and what kind of information we hope to gather through your answers.
Remember, all your answers will stay 100% anonymous!
The survey is split into six short sections:
1. About You: Questions about you and your connection to cleft lip and palate. These will help us better understand your answers to the rest of the survey.
2. Your Priorities: We’ll ask you to tell us your top concerns about your and/or your child’s cleft care. There’ll be a free space where you can tell us more about your answer.
3. CLAPA’s Services: We’ll ask what you think our most important services are and if there were any of our services that you were prevented from using in the past year. We’ll also ask about our work with researchers.
4. Online Events: Questions about CLAPA’s online events, what you value about them and what you’d like to see in the future. Those with no interest in events can skip this section.
5. You and CLAPA: A handful of questions about how you relate to CLAPA and what you’d like to see more of in our communications. There is also an optional section about supporting CLAPA’s work here.
6. NHS Care: Here, you can tell us if you’ve had any issues accessing cleft care in the past 12 months.
Section 1: About You
All the questions in this section will help us better understand the rest of the survey results. This way, we can see how people with different connections to cleft or from different parts of the country feel about our work.
What is your connection to cleft lip and palate?
Your answer helps us to make sure we only show you relevant questions.
How old is your child born with a cleft? (Extra question for parents, carers and relatives)
As children get older, the needs and priorities of the people who care for them may change. This will help us target our services to the people who need them the most at different times.
What kind of cleft were you/your child born with?
This will give us a broad idea of the kind of cleft journey someone may have gone on, including how much treatment they may have gone through. It will also tell us how people affected by different kinds of cleft feel about our services.
Your Postcode Area
This helps us to understand how people in different parts of the UK may be engaging with our work.
Which NHS Cleft Team are you and/or your child under?
We’ll use this to see if there are differences between Cleft Teams when it comes to access to cleft care. We may also share summaries of the survey data with different Cleft Teams, but if we do this, we’ll paraphrase any text answers (or remove them entirely) to ensure your answers stay anonymous.
Questions on age, gender, sexual orientation, ethnic group, religion, disability and financial hardship status
These optional questions will help us ensure we are reaching a broad spectrum of people in the UK cleft community and that our services are helpful and appropriate for all.
Section 2: Your Priorities
Thinking specifically about your (and/or your partner’s/child’s) cleft, cleft care, and your feelings on this, what are your top concerns at the moment?
Section 3: CLAPA’s Services
What do you see as CLAPA’s most important services?
This helps us understand how people from different parts of the cleft community think about our services. Answers to this question are one of many things we consider when planning our services in the future.
In the past year, were there any services you (and/or your child) were interested in but DIDN’T use?
We want to ensure everyone who would benefit from our services can access them without issues. Learning more about why you couldn’t get what you wanted from us will help us make our work more accessible to everyone.
For each service you pick, we’ll ask you why you didn’t access it so we can ensure we have all the information we need to make meaningful changes.
CLAPA is the national charity for everyone in the UK affected by cleft lip and palate. As a small charity, we know there will always be gaps in the support we can offer. We want to know which gaps you think are most important for us to address.
The past year has seen big changes in how CLAPA helps people get involved with research into cleft lip and palate. How much do you agree or disagree with the following statements about cleft research?
This service is still being developed, so it’s helpful for us to know how you feel about involvement with cleft research and how this might change over the years. If we can show that the cleft community believe it’s important for this work to continue, it’ll help us apply for funding to develop this further.
Section 4: Online Events
Do you agree that CLAPA offers enough events which are relevant to people like you?
This is a quick and easy way to tell us if you think we’re putting on the right kind of events. Whether you’ve attended several or haven’t found anything you like the look of yet, we want to know what you think.
What do you value the most about CLAPA’s events?
Your answers here will tell us what to focus on when designing new events. We’ll compare answers to this question between different groups to understand what people at different points of the cleft journey might want from an event.
Adults & Young People: How much would you say CLAPA’s events have improved your knowledge of cleft and the cleft treatment pathway?
This is something we’d like to focus on developing over the next few years, so it’s useful for us to understand how well we’re doing this at the moment.
What kind of events would you be most interested in?
This is a free space to tell us anything about the kind of events you’d like to see CLAPA provide. It’s extremely helpful if you can tell us why you’d like these kinds of events so we can make sure they’re delivering what they should be.
When would you be most likely to attend a CLAPA event?
We want as many people as possible to get the chance to join a CLAPA event. If we can do this by organising them at a more suitable time, we will!
Would you make use of any of the following accessibility features during online events?
Good accessibility tools are an investment, so we want to make sure we’re focusing on those tools that will have the greatest positive impact on our community.
Section 5: You and CLAPA
The first question asks how much you agree or disagree with five key statements about what CLAPA means to you.
1. I feel like I’m part of a supportive community of people affected by cleft in the UK
This is a huge part of what we do as a charity, so we want to make sure we’re providing a community to everyone who wants it. If we’re not, we want to know why so we can do better.
2. CLAPA supports my (and/or my child’s) wellbeing
Feeling good is about much more than medical treatment – we hope that, through our work, we’re helping you to feel better and more confident about your cleft journey, and supporting your wellbeing is part of that.
3. CLAPA supports my (and/or my child’s) cleft treatment
We want our information, events and other resources to be a source of knowledge and support for those going through treatment. We want to know how successful we are at supporting people at these times.
4. If I have a question about cleft, I go to CLAPA
A lot of work goes into making sure our information pages and resources are comprehensive and up-to-date. This question is about how you feel about CLAPA as an information provider – do you think of us when you have a question, and do you trust that we’ll have the answers you need?
5. CLAPA values accessibility, inclusion and diversity
Accessibility, inclusion and diversity are a big part of CLAPA’s future strategy, and although we’ve made some big improvements in the past few years, we know we have a long way to go. This question will help us track how you think we’re doing, and any details you give us will feed into our plans for the future.
What kind of content from CLAPA are you most interested in seeing?
This will help us prioritise the content of our communication and make sure we’re delivering what you want.
Section 5.5: Supporting CLAPA’s Work
Section 6: NHS Care
Have you (and/or your child) had any of the following issues with local NHS dental or orthodontic care in the past year?
We’ve seen some alarming stories from the community about how they’ve struggled to access even basic dental and orthodontic care outside of the Cleft Team. We’d like to better understand what kind of issues different groups of people are having. This will help us to fight for better care.
Have you had any issues accessing cleft care in the last 12 months?
This is another question we regularly ask so we can see how answers for different Cleft Teams (and different connections to cleft) change over time. We expect to see a much higher proportion of people reporting issues in the past 12 months due to the pandemic, but it will be helpful for us to see if these have affected people in some areas more than others, and how this might change between services.
The “didn’t know about this service” option also gives us (and the Cleft Teams!) useful information about which services they may need to give more information about.
Adults: Have you tried to get a referral to an NHS Cleft Service in the past year and, if so, have you run into any of the following issues?
We know that a lot of adults born with a cleft struggle to get a referral for cleft treatment. We want to understand what the most common barriers are. Together with the question about which Cleft Team you’re under (and/or your postcode are), this will help us get a better picture of whether these problems are more common in specific areas or are all over the UK.
Contact
If you have any questions or concerns about the content of this survey, please get in touch at [email protected].