Improving care for children with cleft lip and palate

11 July 2012

About a thousand children are born in the UK each year with some form of cleft lip and palate. At the start of the 1990s, the service for cleft patients was spread across 57 specialist cleft centres nationwide. However, a comparison of patient outcomes of selected UK centres with centres in Europe led to the observation that UK patients were faring far less well. Furthermore very few clinicians in the UK seemed to be engaged in research, despite the UK being in an ideal position to make a significant contribution in this area, given its contained population and that the majority of children with cleft palate are treated within the NHS, monitored through a single information system.

As a result, the Department of Health invited the Clinical Standards Advisory Group (CSAG) to conduct an enquiry into cleft services who then commissioned a nationwide review of the provision of care for children with cleft palate. A research team led by Professor Jonathan Sandy, head of the University of Bristol’s School of Oral and Dental Sciences, documented the care and outcomes of every case of unilateral cleft lip and palate in children aged five and twelve years throughout the UK over a two-year period.

The review generated an extremely comprehensive set of research data covering the care on offer and its impact — or outcomes — on speech, hearing, facial appearance, bone grafting, the structure of the jaw and bones within the skull, as well as how satisfied the child and their parents were with the service. These data were then used to inform decisions that would fundamentally change cleft palate services across the UK. After the research identified poor patient outcomes and the fact that the 57 centres worked as a dispersed model of care for their patients, the research team presented a critical recommendation: the centralisation of cleft palate services in the UK.

In response, the CSAG prepared a report which led to the establishment of the Cleft Implementation Group (CIG). This was the first time that a CSAG report had ever been followed by a formal process of implementation. This was due, not only to the robustness of the data collected, but also to evidence of unanimous clinical support for services to be rationalised. It was also clear that the proposed changes were supported by the Cleft Lip and Palate Association (CLAPA) — an active body of parents and users.

The report recommended that the number of centres be reduced to 11 ‘managed clinical networks’. These centres would be better able to focus resources and expertise on patients, would be better placed to improve the overall coordination of services, and generally lead to better standards of care and improved outcomes for patients. The report also recommended that cleft teams be reconfigured to include regular audits of patient outcomes as a regular part of the restructured service. This embedded a research culture within the newly configured teams.

Early signs following the restructure have been positive. Preliminary evidence has shown that outcomes for patients have significantly improved. For example, now less than 20 per cent of children treated by the centralised service have poor relations between their top and bottom jaws (which would normally require surgery to correct) as compared to 40 per cent in the CSAG study . Centres in similar areas have also started to review outcomes regionally by coordinating tri-centre audits.

“The impact of this research is clear. The review led to the establishment of a professional implementing body — the Cleft Implementation Group — which coordinated a nationwide centralisation of cleft palate services, in accordance with our recommendations,” said Professor Sandy. “What we have now is a modern, efficient and engaged service that is much more in-tune with the needs and requirements of cleft palate patients and their families.”

The story doesn’t stop there however. The impact of the research has also left a legacy of the importance of regular review and evaluation of service provision. Rationalising the service provided the opportunity to develop an ethos and structure conducive to clinical research. Now, fifteen years on, the survey of outcomes is about to be repeated in five-year old children with cleft lip and palate across each of the 11 centres, thanks to a grant from the National Institutes for Health Services Research (NIHR). Led by Professors Andy Ness and Jonathan Sandy , the research will assess the impact of service centralisation on levels of care, physical outcomes and patient/parent satisfaction. This will confirm whether the early positive results from restructure have translated into longer-term improved practice and outcomes for patients.

Please contact Laura Greenwood for further information.