Data and Audit Working Group

Ciara McColganConsultant Paediatrician

Greater Glasgow and Clyde

Data group

1) Identification of CEN2) Determine the minimum dataset(concerns re privacy of data collection)3) Identification of a contact for each Health

Board re data collection

CEN assessment criteriaA child or young person (up to the age of 19) is defined ashaving 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

NHS board numbers 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 Clyde 8 31

Ayrshire and Arran 6 27

Borders 1 8

Dumfries and Galloway - 10

Fife 2 27

Forth Valley 5 23

Grampian 29 29 29

Greater Glasgow N/A 70 70

Highland N/A 16

Lanarkshire 24 47 47

Lothian 54 54 54

Orkney N/A 2

Shetland - 1 1

Tayside 3 38 38

Western Isles N/A 2

TOTAL 132 385

Audit and Research Group

1) Collect information on a wide range of projects2) Develop research questions (CAF and CCNUK)3) Take forward the issue of frequent short

admissions of CEN to hospital4) 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”