Every day, three babies are born with a cleft in the UK.
Every day, an expectant parent searches for reassurance that their baby will be okay and that they’ll be able to cope with what lies ahead. A young person, anxious over the choices they’ll have to make about treatment, wishes they could hear from someone who knows just what they’re going through. An adult looking to get back into cleft care struggles through a confusing set of referrals, hoping they’ll still be able to get the help and support they need.
CLAPA is here to make sure no one affected by cleft lip and palate goes through this alone.
Read on to find out how we’re changing in 2021 to help people like you feel informed, connected, reassured and empowered at every step of your journey.
Where we are now
CLAPA was founded by volunteers who believed in a better future for the cleft community, and, with your help, we’re now able to support thousands of people every year. For most of that time, we’ve centred our services around different regions of the UK, running local events and groups with the help of our incredible volunteers.
These support services and events had a hugely positive impact, but we were only reaching a fraction of the UK cleft community. This work also relied on grant funding which has been shrinking year after year.
The pandemic hit us at the very moment we ran out of funding for this regional work. To make sure we were still there for you and your families during the most desperate time in our history, we had to innovate. When emergency funding gave us a moment to reflect, we focused on the future and what we would need to do to make CLAPA the charity you deserve through 2021 and beyond.
The way we’ve been working all these years has seen us achieve incredible things, but it’s not sustainable. The world is changing, and we need to change with it. Going forward, we’ll focus on delivering a smaller number of services with a greater impact. This doesn’t mean cutting back; it means focusing our limited resources where they can make the most significant difference to people’s lives.
We’ve started working towards this already by coming up with a brand new strategy and plan for the next year, completing a restructure and moving staff into roles to deliver these new objectives.
Here, we’d like to share our plans to adapt and thrive through the challenges of 2021 and beyond and what you can do to help.
‘Digital-first’ and what it means
In a digital world, we’re going digital-first, meaning all our services will be available online.
In some cases, this means tweaking what we already have, but in others, it means re-thinking how we do things from the ground up. At the heart of all of this is a drive to make our work more accessible and sustainable. With your help, we’ve survived the most challenging year in our history and, for your sake, we want to make sure we’re still around for as long as the cleft community needs us. That’s why, when faced with an uncertain future, we’re making plans to be future-proof.
Digital-first means the support you get will no longer be limited to where you live in the UK and will be accessible on your terms, helping us reach a more diverse group of people. Independent evaluation of our support services has shown they have the most significant impact when people use them regularly. Going digital-first means we can offer a greater variety of events more often and can be more responsive to your changing needs in a changing world.
We love our in-person events just as much as you do. We passionately believe in their unique power to bring people together and create lifelong connections. But we also believe that we can’t develop the kind of digital services you deserve unless we give it our full focus for the next year.
So, what will 2021 and beyond look like for the CLAPA Community?
We’ll keep you in the know
It takes courage to reach out with difficult questions. From expectant parents Googling ‘cleft’ for the first time to adults looking for support, your courage should be rewarded with answers.
We want to make sure the information we offer is what you need and is presented in a way that makes you feel confident and in control. That’s why we’ll make changes to our website to make it a modern, vibrant hub for the UK cleft community. We’ll also rebuild our information service to improve and expand what we have on offer, and we’ll do all we can to make sure it continues to keep pace with the challenges families like yours might face in the future.
Like many of our plans, this one requires investment not just in the project costs themselves but in the staff time needed to get it done right. Over the next year, we’ll be working hard behind the scenes to make the kind of changes that will have a significant and lasting impact.
We’ll connect you to the cleft community
We’ve always worked hard to tackle isolation in the cleft community and, in the past year, that work has never been more critical. Moving forward, we want to give people affected by cleft as many chances as possible to connect with and support each other in a way that suits them. This means developing our social media presence to make sure it reflects the entire cleft community. It also means building on the digital events we’ve been trialling to create a calendar of coffee clubs, Q&As, socials, and more.
We want parents and carers to have safe and welcoming spaces to share their experiences, wherever they are in their cleft journey. We want children and young people to have the chance to see and hear from others like them. And we want adults to connect with others who can understand their unique experiences.
Much of this work is already underway, but expect to hear more about it once we have our new Community Engagement Coordinator in position.
To make this as good as it can be, we’ll need your help. We need you to tell us what kind of events you want to see and how we can make these welcoming and inclusive to everyone in the community. Help us make the most of every connection and make sure no one ever has to go through their cleft journey alone.
We’ll be there for you when you need us the most
For the moments that matter, a personal touch is needed.
Our information service just saw its busiest ever year, with complex enquiries from all sectors of the cleft community, but it doesn’t have the resources it needs to shine. Our Parent and Peer Support Service can have such a huge impact, but we think it has the potential to reach many more people in need.
We’ve created a new Advocacy Coordinator role to focus on making these services as effective as they can be. We want to be there for you every step of the way with personalised support and guidance to help you navigate the ups and downs of your journey. From parents and carers struggling with an uncertain future to adults hoping to get back into cleft care, CLAPA is on your side and will be here to help.
We’ll give you the tools to use your experiences to help others
We want to create a world where everyone feels confident and in control of their cleft journey. We think the best way to get there is by talking to people who’ve been through it already, listening to what worked and what didn’t, and using these answers to shape the future of cleft care and support. These opportunities must be accessible to people of all backgrounds and experiences to make sure we’re getting the complete picture.
Over the next year, our new External Engagement Coordinator will expand our patient involvement work to help more people affected by cleft to take part in vital research, feed into CLAPA’s services, and have their voices heard wherever decisions are made about cleft care.
How can you help?
CLAPA is your charity. Your community. With this new strategy, we’re building on our 40 years of experience and using it to meet the challenges the next 40 years will bring. We want you to believe in our work, be proud of what we accomplish, and get excited about what this means for the future of people affected by cleft in the UK.
We want anxious new families to find a warm, welcoming community and a listening ear to reassure them that they can cope with whatever comes next. We want young people who feel excluded to find information tailored to their needs and chances to talk to others who look and sound like they do. We want isolated adults to connect with others like them for the first time in their lives and find the stepping-stones to get whatever support they need.
To get there, we need your help.
In April 2020, our future looked bleak. We faced the genuine threat of having to close our doors by the end of the year, but we’re still standing today because you believed in what we do and were willing to fight for it. Now we’re ready to make the best of a terrible situation and use this time to make substantial leaps forward in every area of our work. We need you to keep believing in us and keep fighting for the cleft community’s future, just as you did last year.
Everything we do starts with you. We need you to step up, get involved, and have your voice heard. Please join our events, make use of our services, and if you can see ways in which we can do better, please tell us. We need you to invest in the future of the cleft community – we need you to invest in us.
Our vision is of a society where everybody affected by cleft feels supported, empowered, and connected. But change only happens when we work together. Will you join us?
We’ll be sharing more about all this very soon. In the meantime, you can…
Read our 2021-22 Strategy – this simple one-page document lays out our roadmap for the next year
Join the CLAPA Community – sign up for our monthly CLAPA Connect newsletters to be the first to hear about events, opportunities and updates from the cleft world
Complete our events survey – take a few minutes to tell us what kind of events you’d like to see in 2021
Become a CLAPA Champion – set up a regular donation of any amount to invest in the future of the cleft community and become a CLAPA Champion
Get inspired to start fundraising – from lacing up your trainers for sponsored laps around the park to virtual tea parties, there are so many ways you can support CLAPA this summer and beyond.