CLAPA is there from the moment of diagnosis and throughout a lifetime with cleft – supporting and connecting families, children, young people and adults, so nobody has to go through their cleft journey alone.
Our work
Babies born with a cleft often can’t feed from a breast or regular bottle. Because of the gap in their palate and sometimes their lip, they can’t form a ‘vacuum’ around the teat and can’t suck; it’s like trying to drink through a straw with a hole in it.
CLAPA is the only UK supplier of specialist bottles and teats for babies born with a cleft. These bottles and teats are used and recommended by NHS Cleft Nurse Specialists.
Each year, we send over 10,000 items of specialist feeding equipment to families and NHS Trusts all over the UK. We provide a free ‘Welcome Pack’ of bottles, teats and information to every new family who gets in touch. We also provide free-of-charge items to families in need.
We manufacture around half our stock with the help of MAM. These are the special soft bottles which parents and carers can use to gently squeeze milk into their baby’s mouth as they feed. The other half of our stock is imported from the USA with the support of Dr Browns Medical. These bottles contain a special valve system which allows babies to get milk through the teat without needing to suck. Learn more about the bottles and teats we supply.
From parents facing a new diagnosis to adults considering going back for more treatment, the cleft journey is full of ups and downs. At times like this, having someone on hand who really understands what you’re feeling can make all the difference.
CLAPA has a network of parent and adult volunteers who have been trained to support others one-on-one. Over the phone or email (or a mix of the two), our Parent and Peer Supporters use their wealth of personal experience as well as their knowledge of cleft and the treatment pathway to reassure those in need that they can cope with whatever lies ahead.
The people using this service are often those with the most acute concerns or with feelings they may not feel able to share with the wider community. This service gives them a confidential space to express these worries, safe in the knowledge that they’ll find empathy and understanding in a non-judgemental environment.
Each year, around 100 people find support through this service, with at least 90% telling us that afterwards, they feel less isolated and more confident and positive about dealing with the issue they got in touch about.
We bring together people affected by cleft in the UK to help them connect with others who share their experiences, welcoming them into a supportive community for life.
Our vibrant social media pages promote positivity, bust myths and celebrate differences with regular content created by and for the cleft community.
Online support groups moderated by trained volunteers provide an instant connection for those looking for an informal support network.
Regular online events give people the chance to talk about their experiences and worries and hear from others at all stages of the cleft journey. Most CLAPA events are online discussions around particular topics such as surgery, feeding and talking about cleft to other people. We also run workshops to teach useful skills such as Baby Signing. Where possible, these are run by volunteers who are parents or were born with a cleft themselves and can use their personal experiences to support attendees. Of those who join our events, 94% tell us they feel better able to cope with cleft-related challenges in the future.
Even for those with lived experience, medical research into conditions like cleft can often feel inaccessible. CLAPA believes that everyone affected by cleft should have the chance to learn about current research, and that opportunities to get involved should be available to all.
“It’s a privilege to be involved in something like this, and it was quite simply inspiring to see how engaged everyone was. Both [facilitators] made clear that [the researchers] really heard, not only the points made, but the bigger picture for each contributor. That’s so validating,” -Participant in a research consultation group organised by CLAPA
We work with researchers to make sure their projects involve patients and families of all backgrounds and experiences.
We also host live Q&As with researchers and publish lay summaries so the results of their work can be understood by all.
For children and young people born with a cleft, connecting with others who look and sound like them is crucial to building self-esteem and confidence so they can grow into adults who feel confident about their future.
Cleft++ is a mentoring service which uses a specialist online platform to safely connect 12-17-year-olds born with a cleft to a trained mentor. These mentors are young adults born with a cleft and they will draw on their experiences to offer personalised support.
CLAPA’s Children and Young People’s Council (CYPC) is made up of 9-17 year olds born with a cleft who are passionate about making things better for others like them. They meet quarterly to share their thoughts and experiences not just with CLAPA, but also with NHS Cleft Teams and external researchers. With their help, we have created a wealth of resources aimed at young people born with a cleft, from leaflets to videos.
We also produce an annual magazine, Cleft Youth magazine aimed at 6-12-year-olds.
There are around 90,000 adults in the UK who were born with a cleft. Many are not aware they can access specialist treatment on the NHS for ongoing issues with their cleft, and those who do try to get back into treatment can often face barriers and other concerns along the way.
CLAPA provides research-driven resources and services to tackle the issues that matter the most to adults born with a cleft. Our information is used by the NHS and is designed to help every adult born with a cleft in the UK to feel informed about and in control of their cleft care.
Online events and support groups help adults to connect with others who share their experiences; many tell us it is the first time in years they’ve spoken to another person about their cleft.
In research and other efforts to improve cleft care, CLAPA works to amplify the voice of this historically underrepresented group and ensure they have a place at the table when decisions are being made.
Our accredited information on cleft lip and palate is led by the cleft community, reflecting their experiences and emotional needs as well as medical facts. We work to untangle and demystify the world of cleft care to help everyone in the UK navigate the ups and downs of their journey through treatment and beyond.
We also provide personalised information and signposting to those getting in touch with complex enquiries about everything from cleft genetics to accessing NHS services. We answer around 150 enquiries a year from people in all sectors of the cleft community, giving them the answers they seek along with the confidence they need to put these into action. If you need help, get in touch today.
We are working to raise public awareness of cleft-related issues in the UK and campaign for a better cleft care and outcomes for the community through our policy and campaigning work.
Many people affected by cleft report that non-cleft-specialists such as GPs and Dentists often don’t know about the condition. This can lead to insensitive comments and poor treatment. CLAPA is working to educate the next generation of health professionals by delivering talks to dentists, midwives and nurses about cleft lip and palate. These talks focus on the emotional impact of a cleft and personal stories from those affected to ensure that these students keep this in mind when they encounter patients born with a cleft in the future.
We receive no NHS or government funding…
…and we rely on donations to continue our vital work. Please help us keep our services free and accessible to the cleft community