1. Future plans NMCN CEN 29 September 2010 Glasgow

2. Future projects as prioritised by Steering and Working groups: 1.Pathway of care: -Implementation -Audit how useful the information of the pathway is -Audit if the time periods in the timeline are achievable/not achievable and why? -Add new documents and incorporate feedback on documents -Use of care co-ordination/GIRFEC 2.Ongoing development of awareness of emotional impact of tube feeding: - Leaflet on the emotional impact of tube feeding to provide information for parents and professionals available by end 2010 -Discussing the need for hands-on training to make professionals more confident to raise the emotional issues with parents - Raise awareness of DVD and reflective questions

3. Future projects: 3. Acute care: -Audit parents experiences with Acute Care at A&E, NHS24 and Out of Hours Services through interviews and questionnaires -Discuss Acute care with professionals in A&E, NHS24 and Out of Hours Services in meetings across Scotland -Discuss the use of Emergency Care Summary and ePalliative Care Screen 4.Data collection: -Link with regional groups across Scotland to get accurate numbers of children meeting the exceptional healthcare needs -Achieve national data collection permissions -Audit the number and reasons for hospital admissions of children with exceptional healthcare needs across Scotland

4. Future projects: 5. Clinical Quality Indicators: -Discuss and agree the NMCN CEN Clinical Quality Indicators by the end of 2010 Preliminary list of Clinical Quality Indicators: - Percentage of children who meet the exceptional healthcare needs criteria registered on SNS or local databases kept in collaboration with NMCN CEN - Percentage of children who have a keyworker or lead professional - Percentage of children having regular MDT reviews - Percentage of children who meet the CEN criteria with low numbers of hospital admissions -Percentage of children who are discharged from hospital within 8 months after identification of their exceptional healthcare needs - Percentage of parents reporting that they received emotional support when their child changed to tube feeding

5. www.cen.scot.nhs.uk Next Conference NMCN CEN: Preliminary date: 8 September 2011 Perth/Dundee