Impact Report: 2020/21
COVID-19 and the Cleft Community
The COVID-19 pandemic caused unprecedented disruption to NHS cleft services, CLAPA’s work, and the cleft community. Appointments and surgeries were delayed or cancelled across the UK, devastating an already stretched service, while more babies continued to be born with a cleft every day.
Many in the cleft community became increasingly anxious, as demand for support rose alongside new concerns with no clear answers. At CLAPA, we pride ourselves on providing the right information and support at the right time to people in need, but as the reality of lockdown began to change everything about how we worked, knowing what was ‘right’ became a real challenge.
Up to this point, much of our work and fundraising income relied on local face-to-face events. When the pandemic ended all these opportunities and forced us to furlough nearly half of our team just to survive, we had to change the way we did things to work in a locked-down world. Thanks to the support of the UK cleft community, NHS Cleft Teams, and our incredible volunteers, we were able to adapt, innovate, and continue to deliver our vital services throughout one of the most challenging years in living memory.
We hope you enjoy reading this report on the difference we made in April 2020-2021.
“It’s been a difficult time for everyone, but knowing we can count on CLAPA has made it less stressful.” – Lead Clinical Nurse Specialist, Spires Cleft Centre.
Helping Babies Thrive At Home
Our priority when the lockdown hit was making sure the families who urgently needed our special bottles and teats to feed their babies weren’t left to struggle alone. Thanks to our dedicated staff, and in collaboration with the NHS Cleft Teams, we kept this service operating at full capacity throughout the pandemic.
In 2020/21, we sent out 703 Welcome Packs to new families and 12,571 individual bottles and teats to families and hospitals around the UK, as well as 2,312 information leaflets.
Each Welcome Pack costs CLAPA around £30. Every penny spent in our shop goes right back into running this service, including providing free bottles to families in need. If you can, please consider making a donation at the checkout the next time you order feeding equipment, it really does make a difference!
“I have received the Welcome Pack and the squeeze bottle from CLAPA during the lockdown and it has helped us enormously. […]The bottle we received from CLAPA was a lifesaver and we couldn’t have survived without it. Also, the information in the welcome pack was very useful and I felt I wasn’t alone, especially we couldn’t go to see and talk with other parents with cleft babies during the lockdown.” – Mother of a baby born during the COVID-19 lockdown.
With rising costs, Brexit and the pandemic continuing to affect our supply of bottles and teats, we’ll continue to do all we can to make sure every new baby has what they need to feed safely at home. If you’ve used our feeding service, please help us apply for the money we need to keep it going by sharing a quote about the difference it made to you and your family.
Keeping the Community Informed
Our website was already a hub of accredited, community-led information, and we acted quickly to bring this in line with the new realities of the COVID-19 pandemic. We published a new ‘COVID Hub’ with information about how the pandemic could affect cleft health services, CLAPA’s services, and people affected by cleft more generally.
CLAPA’s Information Service provides tailored information and reassurance to those getting in touch with complex enquiries. Responding to these often involves sourcing in-depth knowledge about everything from cleft genetics, to supporting siblings, to the politics of NHS service provision. As the cleft community reached out for answers to all the novel concerns raised by the pandemic, demand for this service doubled to 353 enquiries in 2020/21.
To help us manage demand in the future and make the most of this service, we’ve created a new ‘Advocacy Coordinator’ post to ensure every enquiry gets the attention it deserves.
We’ll also keep working with the Cleft Teams to make sure you have all the information you need to feel confident about your cleft journey. Look out for a revamped information section on our website coming towards the end of the year, with new-look leaflets to follow.
At a challenging, uncertain, and isolating time for people affected by cleft, CLAPA’s social media posts provided positivity, optimism, and a warm, welcoming community, especially for those who were new to cleft. At the start of the pandemic, we launched the #DailySmile initiative. Our community submitted hundreds of photos, and we posted a new one each day on Twitter, Facebook and Instagram. In the first three months of the pandemic, our reach on these platforms doubled to around 200,000 people each week!
293 #DailySmile posts brightened up our followers feeds before these changed to less regular but more sustainable #ShareASmile posts in January 2021.
We’ll keep sharing smiles as long as you keep submitting them! We’ll also look at new ways to share stories from the community, including recruiting some volunteer content creators to share their takes on different parts of the cleft journey.
With the pandemic leaving patients and families more isolated than ever, we started to run regular online events to bring people together to share experiences and support each other.
In 2020/21, we ran 33 digital events:
- Nine Coffee Clubs on topics such as ‘diagnosis’ and ‘feeding’ welcomed 265 attendees to talk through whatever was on their mind and have their questions answered
- 13 events for children and young people brought together 348 people for family-friendly fun
- Six informal quizzes had 289 participants on Facebook Live answering questions and chatting with each other
- Five ‘Q&A’ sessions on Facebook Live saw 1,153 viewers both during and after the event. Three of these concerned CLAPA’s research papers published as part of the Adult Services Project. The other two were with specialists covering topics that our Summer Survey told us mattered the most to the cleft community.
The ease of attending from home and the lack of pressure to participate in discussions made these a more accessible option for many people who may not have been able to join face-to-face events around the UK. Around 90% of Coffee Club attendees had never attended a CLAPA event before, but every attendee said they would be happy to come along to another.
“Thank you for today. [My daughter] is lacking in confidence but it was so nice for me that she participated. I’m hoping the more she participates the more her confidence will grow. Thank you for creating a safe non-judgemental place where there was no pressure for anything.”
“Thank you for organising this kind of event under the difficult situation. I feel less anxious knowing where I can go to get some advice if needed. It means a lot to me.”
We’ve recruited a Community Engagement Coordinator to keep developing our online events this year and find new and creative ways to bring the community together. So far, these include a ‘Baby Sign’ mini-course, creative classes to encourage conversation and a series of employment-focused webinars for adults. Check out our Events page to find out what’s on this month!
A Listening Ear
The Peer and Parent Support Service offers confidential, one-to-one support to people who need it, giving them an outlet for their worries, safe in the knowledge that they’ll find empathy and understanding. Our trained volunteer supporters are parents and grandparents affected by cleft and adults who were born with a cleft themselves. These experts-by-experience use their knowledge of the cleft care pathway to reassure others that they can cope with whatever lies ahead.
During the COVID-19 pandemic, the increase in enquiries and the growing complexity of the support needed put a great deal of pressure on this service. In 2020/21, we gave direct support to 93 people.
Responses from parents and carers who have accessed the service show that afterwards:
- 90% felt less isolated
- 95% felt more confident in dealing with the issue they got in touch about
- 100% felt more positive about the issue they got in touch about
“The talk with [my supporter] was amazing. Very helpful and so nice to be able to hear of similar experiences from a parent that meant I didn’t feel as isolated or as helpless to help my child, so thank you.”
“Even though the condition of our children’s cleft was quite different we could share similar experiences which I couldn’t share with other parents which I found very useful. Also, it was really helpful to hear someone’s experiences who had older children so that I could expect what to come in the future.”
We think even more people could benefit from this amazing service, especially dads, who make up only a small number of enquiries. We’ll be looking at how to reach more people than ever before, and on making sure our Supporters stay up to date as the world around us continues to change.
In July, we launched a short survey to take the pulse of our community and find out more about how they’d been affected by lockdown. 268 people responded. The top concerns of parents and carers included cancellations or delays affecting their child’s surgery (21%), appointments (48%) or other treatments like speech and language therapy (31%). Many parents and carers were also primarily concerned about their child’s emotional wellbeing (23%).
The survey also revealed a worrying drop in parents and carers agreeing that they had access to a cleft support network. This decreased from 71% in 2019 to 53% in 2020. For those who said they didn’t feel they had a cleft support network, lockdown was the main barrier as parents didn’t know which services were available or how to access them. This was especially the case for those new to the cleft community.
The results of this survey fed directly into CLAPA’s service delivery plans and were also shared with NHS Cleft Teams. CLAPA published the results of this survey online and used this opportunity to lay out what support was available to address different concerns raised, as well as the plans we’d made to provide support for concerns in the future.
Look out for a new annual survey launching very soon! In just a few questions, this survey will help us get a snapshot of the cleft community’s priorities, needs and wishes. We’ll use this to help us set our future strategy, so please do fill it in when it’s ready – you really will be making a difference!
Advocating for Adults
During 2020/21, the Adult Services Project published three research papers on the topics of interpersonal relationships, physical wellbeing, and emotional wellbeing. Following a year of feedback and consultation with specialist Clinical Psychologists, we redrafted the ‘Leavers’ Pack’. An updated version is now available for adults to receive from many Cleft Teams around the UK or on request from CLAPA.
With many of the plans for our grant-funded Adult Services Project cancelled in 2020, we were able to use the savings to create a new Adult Services Coordinator post for the next year. This role will use all the research completed during the past three years to trial new services and resources to support adults born with a cleft in the UK.
Making Research Accessible
This year, we worked with 16 different research projects to bring their work to the CLAPA community. This involved help behind the scenes as well as advertising for participants on our website and beyond.
If you’d like to get involved in research as a participant or by giving feedback on the project itself, look out for announcements on our e-newsletters and social media channels.
Our new External Engagement Coordinator will focus on making research more accessible to our community. This work is already well underway, with the creation of CLAPA Voices.
The past year has seen some incredible stories shared by people from all corners of the cleft community. Some of our favourites include:
- A parent’s experience of late cleft palate diagnosis
- Susan’s story of having her cleft repaired at 40 years old
- Two adults born with a cleft who became friends through a CLAPA Facebook group
- Behind Every Smile: A series of video interviews with the Children and Young People’s Council about their experiences of growing up with a cleft.
Cleft Lip and Palate Awareness Week 2020
With previous Cleft Lip and Palate Awareness Weeks relying on in-person events to drive fundraising and engagement, the COVID-19 pandemic forced CLAPA to pivot instead to online content to deliver 2020’s Awareness Week on the theme of ‘Behind Every Smile’. The focus was on emotional wellbeing in people affected by cleft, inspired by the recent publication of a research paper on this topic concerning adults born with a cleft as part of the Adult Services Project. As well as sharing infographics and further information on the findings of this paper and what they meant, we worked with some of our young volunteers to put together the #BehindEverySmile video series exploring the psychological impact of a cleft. We also published photos and case studies from all sectors of the cleft community, focusing on promoting positivity.
During Awareness Week, CLAPA’s social media posts on Facebook, Instagram and Twitter were seen over 420,000 times.
Towards the Future
At the end of the year, we put together a new strategy to take us through to March 2022. With this new way of working, we have moved away from a regional model to reimagine our services from the ground up so they can be delivered digitally and UK-wide.
You can read more about our plans on our strategy page.
Investing in the Future of the Cleft Community
It’s no secret that we wouldn’t have got through this past year without the cleft community being so willing to support us. In the early months of the pandemic, when we faced the genuine threat of closure within months, it was incredibly inspiring to find our community waiting to lift us back up again. We are hugely grateful to everyone who stepped up to raise sponsorship, started a regular donation, or gave their time to help us continue our vital work last year. Your support saved this charity in 2020 and ensured we could be there for so many people who needed our help.
But as we look forward to what the next year holds, we know we can’t afford to slow down. The future remains frighteningly uncertain with increased demand for services, fewer funding opportunities, and a cleft service that will feel the impact of the pandemic for years to come. If you believe in CLAPA and what we can do for the cleft community, please consider donating whatever you can or joining in with one of our fundraisers to ensure we can be there for every family, child and adult who needs us.
“The Cleft Lip and Palate Association has a number of important and unique roles including a key role in providing emotional and psychological support for cleft patients and their families…. The important role it has in cleft care in the United Kingdom is at risk at a time when it is now needed more than ever to support cleft patients and their families. The Cleft Development Group feel strongly that all should be done to support this vital charity.” – Simon Van Eeden, Chair of the Cleft Development Group, Royal College of Surgeons