Members

[17 Apr 2007]

Over the last decade cleft care in the UK has changed and treatment is now based in regional centres. This report is based on a survey of parents' experiences.

Regionalisation of cleft care - has it worked?

The Cleft Lip and Palate Association (CLAPA) has launched a report outlining the state of cleft lip and palate care in the UK. The report, based on patient experiences of cleft care, comes nearly 10 years after the publication of a government-backed report highly critical of cleft treatment in the UK. Over the last decade there has been a huge reorganisation of cleft services in response to the government’s concerns.

CLAPA’s chief executive Gareth Davies explains: “We needed to find out whether these changes had really made a difference – so we decided to ask families ourselves. The findings, based on over 200 families’ responses, and summarised below, show that whilst there have been improvements we cannot become complacent. There is still a long way to go.”

Cleft care has improved over the last decade. However, many of the concerns expressed 10 years ago around diagnosis and maternity care, and the care provided by non-cleft ‘front line’ health professionals are still apparent. More than 1 in 10 clefts are not diagnosed at birth. Ante-natal diagnosis has increased but there are still horror stories around “breaking the news” and a serious lack of information. In some cases there is an unacceptable a lapse in the time between diagnosis and the first visit of a cleft team member, both pre- and post-nataly which may be the result of a breakdown in referral mechanisms. There must be immediate improvements in referral times and hospital staff must be made more aware of how to diagnose a cleft post birth and to whom they should refer.

CLAPA believes an overview of cleft lip and palate should be given to all trainee midwives and sonographers and the respective training bodies should be made to implement this. The specialist cleft teams, and CLAPA need to work together to ensure that all ‘front line’ health care professionals are better informed about cleft lip and palate.

A full copy of the report is available by clicking here

A study of delayed detection of cleft palate was conducted by clincians at Great Ormond Street Hospital. The results were published in 2005 and can be seen using the link below.