1. Data and Audit Working Group Ciara McColgan Consultant Paediatrician Greater Glasgow and Clyde

2. Data group 1)Identification of CEN 2)Determine the minimum dataset (concerns re privacy of data collection) 3) Identification of a contact for each Health Board re data collection

3. CEN assessment criteria A child or young person (up to the age of 19) is defined as having exceptional healthcare needs if they:  Have a severe impairment recorded in at least 4 categories together with enteral/ parenteral feeding OR  Have severe impairment recorded in at least 4 categories and require ventilation/ CPAP AND  the impairments are sustained, lasting for more than 6 moths and ongoing CATEGORIES: learning and mental function, communication, motor skills, self care, hearing, vision

4. NHS boardnumbers that meet CEN criteria in SNS ISD 02-2010 numbers confirmed by a number of local health care professionals Estimated numbers of CEN based on confirmed numbers and population size Argyll and Clyde831 Ayrshire and Arran627 Borders18 Dumfries and Galloway-10 Fife227 Forth Valley523 Grampian29 Greater GlasgowN/A70 HighlandN/A16 Lanarkshire2447 Lothian54 OrkneyN/A2 Shetland-11 Tayside338 Western IslesN/A2 TOTAL132385

5. Audit and Research Group 1)Collect information on a wide range of projects 2)Develop research questions (CAF and CCNUK) 3)Take forward the issue of frequent short admissions of CEN to hospital 4)NMCN support for Aberdeen university for Well Child Funding “Do families and clinicians think alike? A study into beliefs related to CP and its management”