Development of the CEN National Network Dr. Patricia D.Jackson Dr. Marit Boot April 2010

National Context For Scotland’s Children Building a Health Service Fit for the Future Same as You Better Health Better Care Delivering a Healthy Future: An Action Framework for Children and young People’s Health in Scotland Revised ASL legislation Curriculum for Excellence National Delivery Plan for Children and Young People’s Specialist Services in Scotland GIRFEC

GIRFEC Core Components Shared understanding among agencies, leading to improved service Central importance of children, young people and their families in the determination of service provision. (Person centred care) Co-ordinated and uniform approach to assessment for, and provision of service. Streamlined planning,assessment, and decision making. ‘Right time Right place’ provision of care Maximising use of appropriately skilled workforce Ensuring a confident and competent workforce Capacity to share demographic,assessment and planning information electronically within and across agency boundaries.

Roots of the NMCN development Scottish Complex Needs Group Support from Voluntary sector organisations for children with complex needs. Proposal to Children and Young People’s Strategy Group ( CYPSG ) Inclusion into the National Development Plan

How are we commissioned What Resources do we have? Lead agency National Services Division Dr Marit Boot Network Manager( March2009) Dr Patricia Jackson Lead Clinician(March 2009) Sarah Legget Administrative Assistant(Feb 2010) (all part-time) Support of the existing Scottish Complex Needs Group Members of the Network,particularly those on working groups

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

Names, definitions and criteria Children with complex needs Children and young people with Multiple and Complex Disabilities Children with complex and continuing health needs Children with special health care needs (CSHCN) Technology dependent children

Definition (from Scottish complex needs group) Complex needs require multi-professional interventions and support, such that no one agency or discipline has a monopoly. Children have severe or profound impairment in at least: 3 of the following areas.  motor  speech and language  vision  hearing  cognitive ability  behaviour  additional chronic health needs PLUS  Need for at least 2 additional resources  therapy services  additional nursing care needs  additional educational resources  additional social care resources  mental health services Needs are sustained: more than 6 months and ongoing

Decision Support Tool Categories (From the English Framework) Challenging Behaviour Communication Mobility Nutrition, Food,Drink Continence and Elimination Skin and Tissue Viability Breathing Drug Therapies and Medicines Psychological and Emotional Seizures

Scottish Context CEN assessment Support Needs System (SNS) Impairment categories Learning and mental functions Communication Motor skills Self Care Hearing Vision plus Additional Supports

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

49 children in Lothian who meet the CEN assessment criteria 10% is ventilator dependent (5/49) 10% require continuous positive airway pressure overnight (CPAP) (5/49) 88% require enteral feeding (43/49) 86% severe learning and mental function impairments (42/49) 84% severe communication impairments (41/49) 92% severe motor skills impairments (45/49) 100% severe self care impairments (49/49) 6% severe hearing impairments (3/49) 45% severe vision impairments (22/49)

49 children in Lothian who meet the CEN assessment criteria CEN assessment criteria based on the complexity of the services and technology involved rather than the diagnostic label CEN present a range of conditions and diagnoses Cerebral Palsy (35%) and Duchenne Muscular Dystrophy (10%) were recorded with the highest frequency as part of the diagnosis

Estimated 320 children in Scotland who meet the CEN assessment criteria Estimated numbers of CEN based on Lothian numbers and population numbers (0-19 year) of NHS boards: Argyll & Clyde (25) Ayrshire &Arran (23) Borders (7) Dumfries & Galloway (9) Fife (23) Forth Valley (19) Grampian (33) Greater Glasgow (53) Highland (13) Lanarkshire (37) Lothian (49) Orkney (1) Shetland (2) Tayside (24) Western Isles (2)

Steering groupEducation and trainingDataAudit and researchService users Pathways of care

Getting Involved Steering Group Service User Group Pathways Group Data Collection Group Education Group Audit and Research Group

Steering group Education and training Data Audit and research Service users Pathways of care

The CEN NMCN is well placed to do the following: Identify and map cen children across Scotland Develop measurable quality standards for care(with NHSQIS) Recommend practical pathways for admission, discharge, use of OOH services etc Share procedural protocols eg; tracheostomy care,gastrostomy care, pain management tools Link to existing specialist groups and networks whose work overlaps eg; Palliative care group, Muscle network Engage with colleagues providing care in all tiers of Health to identify training and support needs to facilitate care as close to home as possible (with NES )

Cont’d Explore use of joint/shared care clinics to facilitate sharing of knowledge/education to local health care team Ensure continuing planned development and training of specialist workforce to support local care. (Skills will need to be shared Scotland wide.) Establish best practice model for the management of this group of children and young people in education and social settings. (includes management of health care procedures training for non health staff) Explore uniform joint funding process with LA colleagues Develop audit / research base Encourage and share innovative models of care( including greater use of telemedicine)

So what’s happened so far? Launch of the network in June 2009 with a stakeholder meeting. Development of the CEN website to facilitate communication Engagement with parents and carers. Development of links with statutory and voluntary sector staff. Prioritisation of work plan targets Provision of information for Regional Planning Groups Year 3 bids to Scottish Government Development of research/audit tool for pattern of admissions CEN Education Day on Tube Feeding Feb 2010 Development of educational resources

N UMBER OF A DMISSIONS FOR L ONG - TERM M EDICAL I NTERVENTIONS O VER T WO Y EARS

L ENGTH OF E ACH A DMISSION O VER T WO Y EARS

Conclusion CEN attend frequently but only just over half are admitted to hospital for a night. With different approaches to care and support from health professionals in the community a number of CEN children may be managed at home and the number of hospital attendances reduced.

Next steps for NMCN CEN Data collection, mapping of those children who meet the CEN criteria? Identifying and disseminating good practice in working with CEN Raise awareness of the issues related to the care of CEN Research on number and reasons for hospital admissions of CEN in all areas of Scotland Training and education related to CEN (enteral feeding, communication between parents/carers and healthcare professionals)

Next steps for NMCN CEN Joint work with Palliative Care Group on the development of the Emergency care/ End of life plans Launch of the CEN Care Pathway 29 th Sept 2010 at Teachers Building Glasgow Work with Scottish Government and Health Boards to ensure consistency of approach to Care Co-ordination for CEN children within the implementation of GIRFEC nationally. Look at best practice in OOH care and Emergency hospital admission.

Please contact the NMCN for Children with Exceptional complex healthcare CEN

Issues National data collection permissions Integration of care co-ordination within GIRFEC model Are we matching the direction of travel at strategy/policy level ?