1. CAWT Diabetes Project Structured Patient Education for Children & Young People Planning Workshop

2. Structured Patient Education for Children & Young People Planning Workshop Welcome!

3. Project Overview Dr Brid Farrell Consultant in Public Health Medicine & Project Chair Public Health Agency

4. Co-operation And Working Together (CAWT)  Cross-border partnership, formed in 1992 between the Health and Social Care Services in Northern Ireland and Republic of Ireland  Facilitates cross border collaborative working in health and social care  Manages a range of cross border, European funded initiatives

5. Project Overview  Funding Proposal Submitted 2007  Funding Application approved Jan 2009  £1.6m - EU INTERREG IVA  Project Board established  Project Manager appointed Aug 09

6. Map of Project Region

7. Project Goals  To review evidence on best practice on Structured Patient Education (SPE) Programmes and design an appropriate SPE for children and their families  To offer children and their families and carers universal access to SPE Programmes  To develop an e-learning package to support SPE

8. Project Evaluation  Evaluation framework being discussed  Similar baseline info obtained including: –Biometrics –Quality of life outcomes

9. Workshop Aims  Share the findings of the audit of current practice completed in November 2009  Agree model/content of SPE programmes  Discuss options for local delivery of the service  Agree sites for Phase 1

10. Audit Results & Draft Model for Structured Patient Education Emma Meneely Project Manager CAWT/SHSCT

11. Overview of Existing Programmes  Kids in Control of Food (KICk-OFF) –Based on DAFNE principles –Teaches participants to match insulin doses to food choices –Delivered over 5 school days in education centres –Delivered by Paed DSN, Dietitian & DSN –Cost approx £600 per child –No improvement in HbA1c, although improvements shown in quality of life measures

12.  Families, Adolescents and Children’s Teamwork Study (FACTS) –Family centred for ages 6–11yrs & 12–16 yrs –2 x 1 hour skill based sessions (carb counting & insulin dose adjustment) –2 x 1 hour sessions on social learning theory involving parental responsibility and communication –Each session delivered by MDT on same day as outpatient clinics –Improvement in HbA1c but no improvement in quality of life outcomes

13. Flexible Adjustment of Basal Bolus (FABB)  2 x 2.5 hour sessions  Teaches insulin adjustment as part of basal bolus regime  Each session is attended by 6 young people and parent or carer  Delivered by Paed DSN and Dietician  Results still to be published

14. Carbohydrate and Insulin Calculation (CHOICE)  Developed by David Chaney, DSN & Nurse Lecturer, University of Ulster  Based on Dusselfdorf model but modified following focus groups with adolescents and families (eg no reference to complications)  Provided to children aged 11 to 16 years  4 sessions over 4 weeks (6pm to 9pm) including a meal  Delivered by David Chaney & Dietician  RCT almost complete, results still to be published

15. Audit Results for Project Region Similarities & Differences  No SPE programmes for children, except in NHSCT  No SPE programmes for adolescents in RoI  CHOICE Programme (RCT) for adolescents in NI  Children admitted to hospital at diagnosis except in SHSCT  Majority of education provided on 1:1 basis by DSN or Dietitian

16. Audit Results (Cont’d…)  Variety of written checklists / care pathways / care plans for schools used across project region when educating new and review patients  Mostly information leaflets produced by pharmaceutical companies provided

17. Need for SPE for Children & Young People?  NICE Guidelines (Feb 2006)  Summary of key criteria: –Structured curriculum –Trained educators –Be quality assured –Be audited

18. SPE Timeline Essential info only provided on one to one basis & DVD provided. Patient advised of requirement to attend SPE Patient diagnosed Approx 4 wks post diagnosis, patient attends SPE programme Waiting approx 4 wks post- diagnosis will allow patient to experience use of insulin & affects of food on blood sugars – further education will therefore be more meaningful 4 wks later, patient attends Paediatric Diabetic Clinic. Provide yearly updates, to include update on carb counting, use of new insulin pens, monitoring devices etc Patient has access to DSN & Dietitian HbA1c checked, any issues patient / parents may have are addressed ANNUAL REFRESHER NB. The modules will be tailored to meet the needs of the following groups: -Children and Adolescents on Insulin Pumps - Pre-school Children - Primary School Children - Post-Primary School Adolescents Patient attends Paediatric Diabetic Clinic every 3 months. HbA1c checked, any issues patient/parents may have are addressed SPE E-learning support for children, parents & teachers

19. Draft Model/Content of SPE Programme  Carbohydrate counting  Insulin adjustment  Hypoglycaemia  Hyperglcaemia  Illness  Travel  Diabetes Complications  Emotional & Psychological Support

20. Allocation of Resources  4.9WTE Professional Staff –DSN / Dietitian / Psychologist  0.5 WTE Admin Support  Project Region –NI: 5 Trust Areas –RoI:HSE West HSE Dublin North East

21. Supporting SPE Delivery …  Resource folder for professional staff & information folder for patients (developed via small, time-bound working group)  Formally agreed by Project Board early 2010 and professionally printed  Induction / training on group education facilitation skills provided (possibly via www.successfuldiabetes.com / Beeches etc) www.successfuldiabetes.com  Selection of sites (phase 1), any issues addressed then rolled out across project region

22. Coffee Break …

23. Small Group Discussions 1) Comments on SPE Timeline / Content of SPE Programme –Should anything be included/omitted? –How will we know it is working? 2) Where/when will SPE programmes be held? –SPE offered during or after Diabetic Clinic / after school / early evening / weekend? –Held in hospital or community venue? 3) Staffing logistics, preferred approach pros and cons: –Additional hours for existing staff? –Recruitment of staff to cover project region?

24. Conclusion & Way Forward Dr Brid Farrell Consultant in Public Health Medicine & Project Chair Public Health Agency

25. Conclusion & Way Forward  Summary Report of Workshop Findings  Formal agreement of SPE programme at Project Board meeting (early 2010)  Pilot sites selected phasing  Staffing agreed  Staff Induction  Development of Resource Manual for staff and Information Folder for patients  Development of E-learning package for children, parents and teachers  Newsletter  Evaluation

26. Contact Details Emma Meneely Project Manager for Diabetes CAWT - INTERREG IVA Project Tower Hill Armagh BT61 9DR Tel: 028 3741 4377 emma.meneely@southerntrust.hscni.net To keep up-to-date with project developments: www.cawt.com/diabetes

27. Thank You!!