CSAG II Research into the impact of the reorganisation of cleft services (NIHR) Jonathan Sandy

CSAG I – why did it happen? Jonathan Sandy Royal Colleges Department of Health Clinician Groups Parent and Patient Groups

Evidence – not much but Eurocleft – Comparison of 6 European Centers Data published in 1991

The Clinical Standards Advisory Group Cleft Lip and Palate

Process data Outcomes Patient and Parent views

CSAG Twelve Year Olds I II III Data is prior to 1998

Alveolar Bone Grafting Oslo n=157 CSAG

UK CSAG Data is prior to 1998

Intelligibility5 year olds12 year olds Normal19%47% Different30%34% Provokes Comment32%15% Unintelligible19% 4% Speech

Patient and Parent Satisfaction

Published in 1998

CSAG Compelling evidence from a detailed and meticulous study Recommendations unanimous Recommendations accepted by Government Recommendations consistent with centres from abroad

Recommendations 57 cleft units to be concentrated in 8-15 centres

Audit from 3 Regions Data from 2003

Audit from 3 Regions Data from 2003

Mike Wake Annals of The Royal College of Surgeons Increased volume = Improved Outcomes

Research Strategy  CFSGBI – Research and Audit Leads  Workshop in RCTs – March 2005  Funding opportunities – Healing Foundation

Research leads Andy NessSteveThomas Lifecourse DeterminantsNutrition and Cancer

The Research Team Sam Leary Charlotte Atkinson Andrea Waylen Alex Griffiths Martin Persson Statistics Nutrition Psychology Statistics Project manager More posts with NIHR programme…

NIHR programme  Workshops and strategy  Systematic reviews  Care and outcomes for cleft children

CSAG-II  Concentrate on 5 year olds for outcomes  Speech, hearing, oral health, dento – alveolar relations etc  Parental and team questionnaires  Process and infrastructure

Funding  Bill Shaw $6 million NIH  Andy Ness £3 million NIHR  Healing Foundation £2 million  MCRN support costs – Sally Davies