Since 1979, The Cleft Lip and Palate Association (CLAPA) has been the only national charity dedicated to all those with and affected by cleft lip and/or palate in the UK. We reach out to families from the moment of diagnosis and help them through any difficulties they have before and after the birth of their child by providing a specialist feeding service as well as targeted information and a national network of trained volunteers providing one-to-one emotional support. This first contact is the start of what we see as lifelong support of children born with a cleft and their families, from infancy through to adulthood.
CLAPA is a small charity based in London. We exist to provide support and information for new parents, specialized bottles and teats for babies, activities for children and young people, advice and support on accessing treatment for adults, and volunteering opportunities including our intensively trained Parent Contacts who provide one-to-one emotional support in their local region. We work closely with the nine specialist cleft teams in the UK as well as generic health professionals to ensure that people receive the best possible care.
WHAT DOES CLAPA DO?
For parents and carers of a child with a cleft, CLAPA is their link to the rest of the UK cleft community, and the practical and emotional support we provide goes above and beyond what is available within the NHS, and is the first part of what we see as lifelong support of affected children and their families.
Unless there is a family history of cleft, new parents are often unaware of the condition and they may find the diagnosis shocking or distressing, especially when confronted with the fact that their child’s first year of life will include surgery and that they may grow up with a visible difference. On a practical level, a cleft palate and occasionally a cleft lip can prevent a baby from forming a vacuum with their mouth, meaning they cannot suck successfully from a breast or bottle.
Our Parent Support Services include:
- Providing special bottles and teats to allow parents to feed their babies. These orthodontic teats are specially developed for use by babies with a cleft, and the bottles can be squeezed so that babies do not have to struggle to suck the milk through.
- A network of intensively trained volunteers known as Parent Contacts who offer one-to-one emotional and practical support and advice to new parents.
- Reliable and sensitive information on all aspects of raising a child with a cleft.
- Events for families including volunteer-run Happy Faces groups
- Access to our online Support Groups including our lively and active Facebook community.
For Children and Young People with Clefts
Our Parent Support Services are designed to help parents give their baby the best start in life, something every child deserves, by promoting confidence about the condition that can be passed on to friends, family and their local communities. As children with a cleft grow older, we aim to build on this foundation by providing them with safe spaces to talk about and explore their feelings about having a cleft, and to meet others like them locally to form supportive friendships. We try to consult with children and young people as often as we can to ensure that as a charity we are providing them with everything they need to grow into healthy, confident adults.
Our Children and Young People’s Services include:
- Children and Young People’s Council made up of 12 members from all around the UK who meet regularly to discuss issues that are relevant to them and their peers, and to act as a voice for other children and young people with a cleft.
- Biannual Residential Weekends designed to help young people build confidence, have fun, and meet other young people with a cleft to share stories, advice and friendship locally.
- Campaigning to raise awareness and visibility of clefts to fight the stigma, including targeting schools to stamp out ignorance.
- Access to a moderated Facebook Group for young people under 18 with a cleft where they can talk about any issues they are having in a safe and secure environment.
For Adults with Clefts
Before the reorganisation of cleft services following the 1998 report by CSAG, many adults had received substandard surgical care and emotional support, and had been underrepresented by CLAPA when it came to us campaigning for needs and issues that were specific to them. Since 2008 we have made a commitment to extend our services for adults born with a cleft, and this is something we are still developing.
Since then we have focused on providing the following services for adults:
- Adult Voices (previously ‘Adult Council’) group made up of a diverse range of adults born with a cleft who can act as the voice of their peers and represent their needs and interests. This group meets quarterly to discuss any issues that come up and to provide feedback and suggestions to CLAPA on ways in which we could improve our services for adults.
- Support for adults looking to continue treatment, including information on how to go about this and what is available.
- Access to a support group on Facebook for adults with a cleft, where stories and advice can be shared in a safe and moderated environment.