About the Annual Survey 2022

On this page, we explain why we’re asking the different questions included in the 2022 Annual Survey and what kind of information we’re hoping to gather through your answers.

Remember, all your answers will stay 100% anonymous!

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Questions are split into 6 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 tick 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 if you wish.

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. CLAPA 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 whole 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.

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 of the questions in this section will help us put the rest of the survey results into context. 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?

This will help us develop the right services for the right parts of our community.

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 do you/your child have?

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 to make absolutely sure you 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?

We first asked this question in 2020, and the responses were extremely helpful as we figured out how to respond to the ongoing problems caused by the coronavirus pandemic. We’d like to ask this question again to understand how these priorities may have changed and to ensure our plans for the future will see us dealing with the things concerning you the most.
As well as selecting your top concerns in this list, you will be able to give us more detail in the follow-up question.

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 take into account 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 make sure everyone who would benefit from our services can access them without any issues. Learning more about the reasons 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 to tell us more about why you didn’t access it.

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: CLAPA Events

Do you agree that CLAPA offers enough events which are relevant to people like you?

This is a quick and easy way for you 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 we should 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.

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!

Section 5: You and CLAPA

Do you feel you are part of a supportive community of people affected by cleft?

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.

Do you agree that CLAPA is a charity which 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.

Do you feel like the content you see from CLAPA reflects you and your connection to cleft lip and palate?
This will help us understand how different people from the cleft community feel about the content we put out. If we aren’t representing a part of our community, we want to know about it!

Section 6: NHS 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.


If you have any questions or concerns about the content of this survey, please get in touch at [email protected].

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