Children & Young People’s Health Support Group 12 th December 2012 Dawn Moss, Lead Clinician / Marit Boot, Manager

Summary Potted overview of CEN CEN resources to support practice Getting it Right for CEN CEN’s role in data collection – audit of hospital admissions

Aims of the NMCN CEN Ensure a comprehensive mapping of children within Scotland and share data to support an evidence based approach to service redesign Involve children, young people and families in discussions about service improvements Be a focal point for health professionals, social work and education staff working with children with complex needs to share good practice Identify workforce needs - training and capacity

Working with stakeholders across boundaries December contacts (parents and professionals) January – December 2012 – around 600 unique visitors to CEN website each month

NMCN CEN Groups Steering group Education and training Data and Audit Service users Pathway of care

Children with Exceptional Healthcare Needs Group defined by the complexity of their healthcare, rather than their diagnostic label

Around 400 children with exceptional healthcare needs in Scotland

CEN Resources to Support Practice Tube feeding DVD, leaflet and research report Communication DVD and education workshop 2011 – Pathway of Care 2012 – Early Support booklet and learning activity

Getting it Right for CEN “Everyone has a responsibility to do the right thing for each child and we must all work towards a unified approach, with less bureaucracy and more freedom to get on and respond to children. This will mean earlier help and the child getting the right help at the right time packaged for their particular needs.”

Getting it Right for CEN Plans for 2013 – –Pathway amended to reflect GIRFEC – –CEN module with additional educational content re GIRFEC – –Scoping re lead professional and child’s plan for CEN across Scotland – –Analyse hospital admission patterns of CEN and discuss care closer to home – –Working with Scottish Government (Deirdre McCormick, Complex Care Group, Modernising Nursing in the Community) to complete the work on scoping of home care packages and use of healthcare assessment tools to improve equality of home care provision

Home care packages for children with exceptional healthcare needs Mapping of home care packages to collect data and analyse reasons for differences in home care provision Pilot of healthcare assessment tools (Lothian Children’s Continuing Healthcare assessment Tool (CCHAT) and other assessment tools and approaches) Outcomes will be discussed Jan 2013 with Boyd McAdam (GIRFEC team); John Froggatt (Deputy Director Child and Maternal Health Division); Katherine McKay (National Clinical Lead for Children and Young People)

Hospital admissions for Children with Exceptional Healthcare Needs ISD analysed 1292 hospital admissions (2010) for 321 children (CEN on SNS (2012) and CEN on Highland database) Included: 8 born in 2011 (no admissions in 2010);11 born in 2010 (less admissions) 79% admissions to hospital within SNS board of registration (21% outside)

Number of hospital admissions

Number of admissions & length of stay

Same day discharge

Length of admissions

Hospital admissions per age group

Discussion Hospital admission data Provision and healthcare assessments for home care packages