CEN NMCN UPDATE August 2011 Dr Patricia D. Jackson Lead Clinician Dr Marit Boot Network Manager

NMC CEN Groups Steering group Education and training Research Data and Audit Service users Pathway of care Please contact us if you are interested in joining a working group:

Group defined by their complexity of healthcare, rather than their diagnostic label

NMCN CEN assessment criteria

Assessment criteria 2 profound impairments 1 priority/severe impairment Scottish CNG: 2 or more profound/severe impairments + 2 or more types of resources 2 or more severe impairments English NSF: 1 or more priority/severe impairments or 3 or more highs 4 or more severe impairments + enteral/parenteral feeding 2 or more severe impairments + ventilation/CPAP Exceptional healthcare needs NMCN CEN: 4 or more severe impairments + enteral/parenteral feeding OR 2 or more severe impairments and ventilation/CPAP

Assessment criteria 2 profound impairments 1 severe impairment Scottish CNG: 2 or more profound/severe impairments + 2 or more types of resources 2 or more severe impairments English NSF: 1 or more priority/severe impairments or 3 or more highs 4 or more severe impairments + enteral/parenteral feeding 2 or more severe impairments + ventilation/CPAP Exceptional healthcare needs NMCN CEN: 4 or more severe impairments + enteral/parenteral feeding OR 2 or more severe impairments and ventilation/CPAP Aim: Over a period of 5 years have an effect on all services involved in the care of complex needs children in Scotland

Progress so far Launch Meeting June 2009 Data collection Educational resources: Enteral feeding Communication Education Day February 2010 Enteral Feeding Issues Conference September 2010 Pathway development Audit of Pathway Emergency Care Theme of Conference September 2011

Contacts and website NMCN CEN

Who is the Pathway for? What is the aim of the Pathway? Why is there a timeline? Pathway for Children with Exceptional Healthcare Needs

Pathway of care for Children with Exceptional Healthcare Needs

Pathway of Care: Information and guidelines for professionals and parents (links to 150 good practice documents, guidelines and websites on 16 topics) Viewed on the website by over 650 people in the first two months after the launch. Work done by NMCN CEN (April 2009-December 2010)

Continue data collection across Scotland to identify all children meeting the criteria, emphasise the use of SNS or other sustainable databases Audit pathway of care Audit numbers and reasons for hospital admissions for children with exceptional healthcare needs Survey parents experiences with Out of Hours Services, Emergency Care, Anticipatory Care Planning and discuss emergency care with professionals New education module ‘How do you want me to talk to you’ about communicating with a child with severe communication impairments Next event: 8 September 2011 NMCN CEN Conference Emergency Care for Children with Exceptional Healthcare Needs Future work