Establishing an antenatal group for families with a diagnosis of cleft lip

Lynn Douglas1

  • 1Central Manchester University Hospitals NHS Foundation Trust, North West England, Isle of Man, North Wales Cleft Lip and Palate Network lynn.douglas@nhs.net

U.K. cleft teams offer antenatal packages of care, which seek to be research based and respond locally to national standards of care set by the U.K. cleft nurse's special interest group (SIG). In April 2010 the 18-to-20-week National Health Service (NHS) Foetal Anomaly Ultrasound Scan Programme (FASP) standards and guidance for England were changed to include routine screening of the face to improve national pick up rates for cleft lip, which should increase referrals to cleft teams. This article aims to discuss the development of a specialist cleft antenatal group, established as a collaborative project between clinical nurse specialists (CNS) and clinical psychologists in the north-west England, Isle of Man and North Wales (NWNW) Cleft Network. Two pilot groups ran in 2008. Families referred to the team in the antenatal period were invited to attend a 'one-off' group before their child's birth. The group aim was to facilitate parental adjustment to cleft diagnosis in the antenatal period. Regular groups were then established in both network surgical hubs (Alder Hey and Royal Manchester Children's Hospitals (AHCH and RMCH)) every three or four months as part of the routine package of care provided by the team. Attendance at these groups ranged from 30-50% of those invited between 2008 to 2011. Feedback forms from attendees have informed the evolution of the group. The groups facilitate peer support at an important adjustment time for families.