From among all the interviews we conducted there were lots of stories of positive experiences. Families appreciated the support they had received from professionals, friends and others in their communities, schools and other services. There was a strong feeling of wanting to ‘give something back’ to the cleft community. This concept was formed on the basis of being grateful for the support of organisations such as Cleft Lip and Palate Association (CLAPA), CLAPA Edge and Changing Faces and for the treatment received through the regional cleft lip and palate services provided by the NHS (see ‘Cleft treatment pathway’). Some people were involved in giving advice to others through social media forums and others took part in fundraising and awareness raising activities for the cleft community in the UK.
Natalies son was born with cleft lip and palate but through having good experiences at school and socially he has developed a strong identity.
Matt’s daughter was born with a cleft palate and being able to share experiences with other people through direct contact and social media made things easier for the family.
Andy and Diane encourage parents to look at UK based information from reliable sources such as CLAPA. They also question the information given through the NHS and how it is delivered.
Parents and individuals also had advice to give to others regarding how to research cleft-related issues with regard to treatment and living with the condition.
Becky and Mark say that looking for information on the internet can be misleading and advise looking at recognised sites such as CLAPA. They also advise to look at before and after’ images of babies that have had cleft surgery.
Mary W encourages others to consult charities such as CLAPA and Changing Faces and not to let a cleft become a defining feature of your life.
Some of the younger adults we spoke with had received good information and support from other people born with clefts they had met through ‘CLAPA Edge’. CLAPA Edge is the Cleft Lip and Palate Association’s organisation for young people who were born with cleft lip and/or palate and incorporates a youth council for the discussion of cleft care. The ‘Adult Voices ‘ network provides a forum for adults born with cleft to discuss issues of living with the condition and accessing treatment as an adult. Adult Voices is associated with the CLAPA Facebook pages.