Update on proposal for a Scottish Children and Young People’s Continuing Care Framework (CYPHSG May 2015) Debbie McGirr, Lead Clinician, CEN Jayne Scotland, Network Manager, CEN Liz Blackman, Senior Programme Manager NNMS National Managed Clinical Network for Children with Exceptional Health Care Needs (NMCN CEN)

(Department of Health 2010) Continuing care “A continuing care package will be required when a child or young person has needs arising from disability, accident or illness that cannot be met by existing universal or specialist services alone” (p.10) (Department of Health 2010)

Core Additional Who is it for? Complex Universal Intensive Acute Children's needs being met within their families their communities and by Universal Services Universal GIRFEC Additional Intensive Acute Core Continuum of Need and Response

The context of Continuing Care for infants, children & young people in Scotland SNS data 2012 (0-19yr) 15,541 children requiring additional support 78% had at least 1 impairment requiring additional support 27% had at least 1 severe impairment requiring additional support from a range of universal and specialist services SNS data 2015 (0-19yr) 18,898 children requiring additional support 80% had at least 1 impairment requiring additional support 30% children had at least 1 severe impairment requiring additional support from a range of universal and specialist services

National data collection project 2012 Findings from Scoping exercise (14 Health boards) National scoping exercise of Home Care Packages for children with exceptional and complex needs across Health Boards in Scotland B) National pilot of Children’s Continuing Healthcare assessment Tool (CCHAT) 151 home care packages 0-19yrs 6,669 hours home care support funded in part, or 100% by Health in 11 HB Variation in access to services and to use of assessment/decision making support tools Small numbers, highly specialist services, high cost

What does this mean in reality? Lack of consistency in care provision Some funded by HB, others by commercial companies Variation in numbers of care packages – between 3 to 20 at any one time depending on size of community teams COSTS: e.g. 2012 Child requiring long-term ventilation Package of care involves 10 hours per night Delivered by trained carers 7 days per week £130,000 per year Similar costs in 2015 – approximately 30% higher

Data collection project summary Reminder: Data collection project information has been available for 2 years: January 2013 – CEN presented findings to SG September 2013 – CEN presented findings to SEND December 2013 – CEN presented to Child Health Commissioners Group April 2014 – CEN presented to CYPHSG December 2014 – CEN presented to CYPHSG May 2015 – CEN presenting formal project brief to CYPHSG Findings indicate: variation in access to and delivery of targeted and specialist services increasing numbers of children with complex needs surviving to adulthood adult services not prepared for care packages of this size and complexity

The Project: A national framework for children’s continuing care WHY? Need for consistency & equity for children with additional care requirements who require targeted intervention Policy drives practice Joint Health & Social care integration agenda Supports the delivery of GIRFEC , the CYP (Scotland) Act (2014) and Transition Ability to link across statutory services, 3rd sector partners and other networks Contribution to consistent, cost-effective care provision for children, young people and their families

The project: 2 pieces of interlinked work Creation of National Continuing Care Framework for Children & Young People Create evidence based National Policy document which: Defines continuing care Sets the context for integrated care delivery Addresses reduction in inequality and inconsistency in care provision Creation of national assessment tool to embed into framework an holistic integrated assessment tool for use across statutory bodies work in partnership with parents/carers Suggestion: Use Lothian Decision Making Tool (DST) (adapted from DoH document 2010) currently being piloted across all Lothian care packages

The project: Vision and Timeline Project to be adopted as a policy development by CYPHSG for 2015-16 or 2016-17 In scope – all CYP with complex, exceptional and/or additional needs who require a bespoke package of care to meet needs 18-24 months – review information from previous scoping exercise, evaluate of current DST use in Lothian, test & validate across national pilot sites, develop and test framework incorporating assessment tool Summer 2015 onwards (start date negotiable) Requires experienced project manager who can link with clinical experts Stakeholders: SG; CYPHSG; NSD; NHS Boards; Community Teams; LA; Education; DCYPAG; 3rd Sector partners; Joint Integration Teams

Thank you for your time Questions??