Stakeholder Day 17 th June 2009

1. Stakeholder Day17th June 2009

2. Why is it a good time to be developing this Network?

3. 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

4. GIRFEC Core Components • Shared understanding leading to improved service • Central importance of children, young people and their families in the determination of service provision • Co-ordinated and uniform approach to assessment for and provision of service • Streamlined planning and 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.

5. What’s gone before? Scottish Complex Needs Group • Started just over 5years ago • Health professionals from nursing and medical backgrounds working with children with severe complex needs. More recently parent group representatives. • Forum for information sharing and to problem solve, so that we didn’t all ’reinvent the wheel’ • Meets 2-3 times a year • Restricted because it wasn’t funded, and unable to expand to everyone who needed to be involved

6. What have we done so far? • Discussed common protocols for training for carers and parents for particular tasks eg tracheostomy care , gastrostomy care • Looked at best practice in relation to care planning, pathways for entry and discharge from hospital, end of life planning, transition to adult services • Debated how to best support domiciliary care in the community • Shared successes and failures! • Agreed the need for and put forward a proposal for an NMCN for children with Complex Healthcare Needs

7. DefinitionWho is the Network for? 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: Needs are sustained: more than 6 months and ongoing

8. Because of recent changes to the SNS we are currently looking at, additionally, using a modified Decision Support Tool developed from the Dept of Health in England’s consultation document Children and Young People with Continuing Care Needs

9. Decision Support Tool Categories • Challenging Behaviour • Communication • Mobility • Nutrition, Food,Drink • Continence and Elimination • Skin and Tissue Viability • Breathing • Drug Therapies and Medicines • Psychological and Emotional • Seizures

10. Five levels of Need Scored • Priority • Severe • High • Medium • Low

11. Continuing Care Criteria reached with • 3 Highs Or • 1 Priority Or • 1 Severe

12. Who do we Mean?Case Scenario • Boy with inherited neurodegenerative disorder. • 1 unaffected sibling • Gastrostomy fed • Asthmatic • Severe spasticity and nocturnal spasms.(Has Baclofen pump for symptom control) • Overnight CPAP • Palliative care team and Pain team link • Tissue viability nurse • Changing equipment needs • Due to transfer to adult services

13. Number of Children with Complex Needs in ScotlandNumber with Exceptional Health Care Needs • an estimated 7,200 children in Scotland meet the definition of children with complex needs ( Currently 3321 of these children are registered on the Support Needs System SNS. Other data systems exist in some Health Boards ) • Core of approx 800children with ’exceptional’ health care needs ( This is the group for whom we have been asked initially to develop the NMCN )

14. Children and young people will be defined by the complexity of their care rather than by diagnostic labels This will mean a need to have close links with other specialist care/clinical networks

15. Ventilation planning Therapy provision Equipment provision Housing / Heating Primary health care Acute care provision Educational provision Leisure activity Family breaks Parental and Sibling support Specialist Respiratory support team SALT, OT, Physio, Dietitian L.A. and/or Housing association Joint equipment store (hopefully) Primary care / CHP colleagues Tertiary and District General hospital support L.A. Education Dept support Social Work and Voluntary agency support What may be needed?

16. Results from the National Delivery Plan ConsultationWhat do Parents and Carers Want? Integrated and Coordinated services • Children with complex needs are first and foremost children and should be supported to use general and local services wherever possible • Child and families to be fully involved in planning and influencing the provision of care • Care to be coordinated across health, local authority and voluntary sector providers by key worker • Agencies to share appropriate information (with consent) in order to ensure greater coordination of care and improved quality of services

17. Decision Making • Timely decisions to be made about the funding of packages of care and the provision of equipment • “Decision making around funding was perceived to be a difficult area as was obtaining clarity about budgets across all agencies concerned. There was a lack of control and flexibility around the sums of money provided. The funding available was unpredictable and it was not always clear where the source of funding was, or indeed where the actual sources of funding should be. (Perth Consensus conference Jan 04) A Joint Health and Local Authority Funding mechanism in each board is essential to addressing these issues Offer choice • Boards should be able to offer services and/or direct payments to families in line with the current legislation within local authority services

18. Aims of the NMCN • Ensure complete identification, and up to date data collection for this group of children and young people • Agree measurable quality standards for care (NHSQIS) • Agree a methodology for a standard approach to assessment and decision making, which links to GIRFEC process • Establish consistent practice for management of admission and discharge processes and use of ‘out of hours’ services • Identify education and support needs for locality health services to manage children closer to home (NES) • Explore use of joint/shared care clinics to facilitate education and sharing of knowledge to support delivery of more care in local settings via primary health care team

19. Aims for MCN(cont’d) • Consider potential of telemedicine for this group of children • Develop integrated pathways and protocols for treatment of specific types and groups of conditions in conjunction with other specialist groups eg. the Muscle Network, Palliative Care Services • Establish best practice for the management of this patient group within education and social settings, to include management of health/care procedures and training programs required for staff. Standardised approach. • Consider joint funding process with LA colleagues • Support/Initiate appropriate audit and research

20. Who needs to be involved with the Network? • Basically everyone at all levels of health care who have an interest in provision of care to this group of children and young people, especially those who can be trained and supported to ensure that care is provided as close to home as is possible • Regional Decision making groups with budgetary responsibility • Parents and Children • Local Authority Representatives • Voluntary Organisations

21. So How Can You Help? Hoping you’ll all feel motivated to: Share your ideas of what you feel is needed for this defined group of children. Identify what you feel the NMCN could do for you and how best to communicate information Suggest how best to achieve representation of your views on the Steering Group., and Working Groups.