The parents and individuals we spoke to about their experiences of being affected by cleft lip and/or palate were generally very satisfied with the standard and availability of care within the UK regional cleft services.
However, based on their extensive experiences of communicating with health professionals, parents of children born with clefts and those who themselves were born with a cleft had some advice that they wanted to give to health professionals. This included information about the way in which care in the cleft service is delivered as well as a need for greater sensitivity and awareness among general and specialist staff.
The advice of the people we interviewed was intended for cleft specialists, sonographers, GPs, health visitors and midwives. This advice was related to the diagnosis of a cleft (see ‘Getting the news of a diagnosis of cleft‘), feeding a baby born with a cleft, meeting with the multidisciplinary team (MDT), ‘pre-operative care and surgery, and all stages of the cleft treatment pathway. There was also a need for more awareness among health professionals who may not be cleft specialists such as ear nose and throat (ENT) specialists (see; ‘Speech, language and hearing‘ and Jenny’s interview below).
Iva was very satisfied with the care that her son received in the U.K. when he was born with a cleft lip.
Andy and Diane were not satisfied with the way in which their son’s cleft lip was diagnosed by a sonographer. Later they met the Clinical Nurse Specialist who introduced them to the cleft team.
Jenny’s experience of cleft services improved greatly following the diagnosis of her daughter’s cleft palate.
There were also comments relating to late diagnosis of cleft and other conditions associated with cleft lip and/or palate (see ‘Cleft and other conditions‘). As a cleft palate cannot be detected at the 20 week antenatal scan it is the responsibility of a health professional to look at the baby’s palate at birth.
Maria’s daughter received a late diagnosis of cleft and also has Sticklers’ syndrome. Maria is involved in raising awareness of late diagnosis of cleft among midwives and other health professionals.
Laura’s daughter received a late diagnosis of cleft palate. Laura feels there should be more awareness of cleft among health visitors and midwives.
Mandy’s son did not receive a diagnosis of cleft palate until he was 6 years of age. Mandy feels that health professionals should listen to the concerns of mothers and to be more aware of cleft issues.
Communication with health professionals was of particular interest to young adults we spoke to who were born with cleft as they had all had recent experiences of treatment.
Alex had undergone extensive cleft treatment as a child but she believes that health professionals use too many long words when talking to young people about their treatment.
Josh believes it is important to include the person with the cleft themselves in all discussions about treatment as he was.
Lizzie recalls that she was not included in making decisions about the cleft surgery she received as a teenager.
Hannah felt that there should be more emphasis on the input of the psychological services within the cleft team, and that they could act as a mediator between individuals and professionals.