1. 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)

2. (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)

3. 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

4. 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

5. 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

6. 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

7. 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

8. 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

9. 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

10. The project: Vision and Timeline
Project to be adopted as a policy development by CYPHSG for or
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

11. Thank you for your time
Questions??