Summer Survey 2021: The Results
CLAPA’s Annual Survey is designed to give us a snapshot of your needs, priorities and concerns. As a small charity, we have to plan carefully to focus our limited resources where they’ll make the biggest difference. By completing this survey, you’ve helped us make sure our plans include you!
This isn’t the only way we get feedback from our community. We read every single post-event survey you complete and take your emails, comments and posts on social media into account too. Your feedback can help us shape CLAPA into a charity that meets your needs, so please get involved whenever you can.
We hope you enjoy this short summary of our 2021 Summer Survey results.
Who Took Part?
108 people responded to this survey. 72% of them were parents/carers, 30% were adults, and 8% were partners or relatives.
Children
Most of the parents and carers had younger children, with 17% under a year old, and 32% aged 1-4. 66% had children with a cleft lip and palate, while only 6% had children with an isolated cleft palate. Given that around 45% of children born with a cleft have an isolated cleft palate, this is a concern, as it seems this community is seriously under-represented in our survey results.
Location
Most respondents were from central (24) or southeast (38) England. Only a small number were from Scotland (4) or Northern Ireland (3)
Demographics
The people responding to this survey were mostly female (89%), white British (93%), and straight (94%).
The largest age groups were 25-24 (33%) and 35-44 (30%).
Most were not in financial hardship (80%).
CLAPA’s Response
We know this doesn’t represent everyone in the cleft community – by a long way. We’re working to ensure more people feel involved and engaged in our work, but we always want to hear from you if you have suggestions on how we can make CLAPA a more inclusive and welcoming space for everyone affected by cleft.
CLAPA and You
We asked people to write down the top three words they associated with ‘CLAPA’.
There were some lovely words chosen. Some of the most common words were:
- Community
- Friendly
- Helpful
- Informative
- Positive
- Supportive
- Understanding
This certainly reflects how we think of ourselves as a charity, so it’s wonderful to hear that from you too!
A Supportive Community
When we asked if respondents felt like they were part of a supportive community of people affected by cleft lip and palate, 73% said ‘Yes!’
In 2019, this number was 71%, but in 2020 in the middle of lockdown it had dropped down to 53%, so we’re delighted that we’ve been able to reach and connect more people this year.
When we asked what CLAPA could do to help more people feel part of this community, you gave us some brilliant answers which included:
- Information aimed at the different people who may be part of a child’s life, such as grandparents and teachers.
- Support for older adults born with a cleft, particularly the over-55s.
- Talking about the more difficult side of cleft lip and palate as well as focusing on positivity.
- Promoting CLAPA’s work more within NHS cleft services to give as many people as possible a chance to get involved.
CLAPA’s Response
We’ve taken on board the suggestions made in the survey and will include them in our discussions as we work to make plans for the next few years.
A ‘grandparents’ section of the website is already in the works, and we’re looking at revamping our resources for teachers as we restart our programme of awareness-raising talks in schools. The Adult Services Project continues to look into and create resources for adults of all ages, and we’ll pay close attention to any opportunities to support older adults in particular.
We also know that although CLAPA works to create a positive space for everyone affected by cleft, this doesn’t always reflect the experiences of our community. With this in mind, we’ll be looking at the kinds of stories we collect and share, and will do we can to make sure that everyone who visits our website and social pages can see their cleft journey reflected.
As for NHS cleft services, look out for new CLAPA posters coming soon in waiting rooms up and down the UK to promote our online events and support services.
Your voice really does matter when we plan our priorities for the future, so please do take part in these surveys when you can – your comments could make all the difference!
CLAPA’s Activities
We asked you which of our charitable activities were most important to you personally, just as we did in 2015 and 2010.
The results were extremely close, showing just how much all our activities are valued. Clustered together at the top were:
- Promoting cleft research
- Providing information on cleft
- Working with the NHS to improve cleft services
While providing information has always scored highly, the other two are placed much higher than they’ve been in previous surveys. Given the disruption caused by the pandemic, it’s no surprise to know that many people are concerned about what the future may hold. CLAPA will continue to develop our close relationship with the NHS Cleft Teams, and do all we can to ensure your voices are heard. As for research, we’ve made big strides in this area in the past year! If you’re interested in finding out more, join CLAPA Voices to be the first to hear of opportunities to get involved in research as well as the development of CLAPA’s work.
CLAPA’s Services
We asked you to tell us which CLAPA services you’d used in the past, and if there were any on our list you didn’t know about or hadn’t been able to access.
Most popular services in the last 12 months
- Website information (61%)
- Stories & interviews (57%)
- Facebook support group (46%)
Over the past year, many people found support online through our website, the stories we posted on social media, and the busy Facebook groups that help people share their concerns and experiences at all hours.
Least-known services
- Cleft Talk podcast (61%)
- One-to-one support from CLAPA volunteers, aka our Parent and Peer Support Service (42%)
- Involvement with research (33%)
- Live Q&As (32%)
- Support from CLAPA staff with questions or concerns, aka the Advocacy service (31%)
Knowing which of our services people aren’t aware of is extremely helpful when looking at where to target our communications for the next twelve months.
How satisfied were service-users?
We were delighted to find that all of our services had at least a 4-star rating, demonstrating that overall our service users are satisfied with their experiences.
The highest-rated services were the bottles and teats, stories, and the advocacy service, which all had 4.7+ ratings. At the lower end were the Cleft Talk podcast and online events, with 4.1 and 4.3 respectively. In the follow-up question, we received some useful suggestions for these services which we’ll take into consideration as we plan our future work.
How can we make our services more welcoming and accessible?
Key suggestions here included:
- Restart in-person events for young people in particular.
- More events around specific stages in the cleft journey
- Make sure we use simple, accessible language that doesn’t assume prior knowledge when advertising services.
We always want to hear from you with suggestions and comments about our work. Contact us at any time to share your thoughts.
Events
We asked if CLAPA’s events over the past 12 months met your needs, and of those people who were interested in events:
- 42% said ‘Yes, completely’
- 36% said ‘Yes, a little’
- 22% said ‘No’
Parents and carers with older children were the most likely to say their needs weren’t met or that they weren’t interested in online events.
What did people value about the content of CLAPA’s events?
The highest-rated options were:
- Discussions around different stages of the cleft journey (4.6/5)
- Having cleft experts present to answer questions (4.6/5)
- Hearing others talking about their experiences with cleft (4.5/5)
Given most of our online events are structured around sharing experiences and listening to others, it’s good to see this is valued by event attendees. We’re looking at different areas where we might be able to bring in experts but, in the meantime, our Q&As are a valuable resource to learn all about particular topics outside of the conversations you’ll have with your Cleft Team.
What did people value about how CLAPA’s events are organised?
There was a much wider spread of ratings for this question – it looks like different people value very different things! Just ahead of the other options were:
- Having lots of options so I can pick and choose what to attend (4.2/5)
- Attending in-person (3.9/5)
- Benefiting from an event without directly participating (3.4/5)
We know that even if we had double the budget we do now, we wouldn’t be able to put on a programme of events that worked for everyone’s competing needs and wishes. This means making some difficult decisions and prioritising what we think can deliver the greatest impact to the greatest number of people, with accessibility, inclusivity and safeguarding at the centre of our planning process. We’re continuing to test out what works and what doesn’t, and we’ll keep learning and changing as we go. Look out for announcements in 2022 to find out what the next three years have in store for CLAPA’s events.
NHS Care
We asked which NHS services you had issues accessing in the last 12 months. Unsurprisingly, the results revealed more issues than in previous years, but overall it was encouraging to see that although there had been delays, most people were able to get what they needed.
As we’ve found in previous years, the least well-known services were Clinical Psychology and Genetic Counselling. If you’re interested in learning more about these services, get in touch with your cleft team to set up an appointment.
Next Steps
Right now, the CLAPA team are hard at work putting together a new strategy for 2022-2025. This strategy takes into account all we’ve learnt in the past year, as well as everything you’ve told us in surveys like this one. Our Board of Trustees have volunteered many hours since September to help us put this together, and we look forward to sharing more with you in the new year.
Until then, please continue to fill in every survey, poll and Q&A box you come across to help us make sure we’re working for you – your voice really does make a difference!
