1. Dr Richard Hain Lead Clinician, Welsh PPM Managed Clinical Network Sugar Implementation Children and Transition Stakeholders’ Conference 29 th September 2009 Paediatric and transitional palliative care in Wales

2. Dr Richard Hain Lead Clinician, Welsh PPM Managed Clinical Network Sugar Implementation Children and Transition Stakeholders’ Conference 29 th September 2009 Paediatric and transitional palliative care in Wales Foundations, buildings and cement

3. Introduction Blueprint: what we are aiming for Foundations: what SIG has already achieved Cement: databases and communication –CaNISC –DicData

4. Child/young person with LLC & family Child/young person with LLC & family Primary care Community paed nurses Hospital & community paeds Resources Specialist PPC Hospices Oncologyoutreach Other outreach SpecialSchools

5. Child/young person with LLC & family Child/young person with LLC & family Primary care Community paed nurses Hospital & community paeds Resources Specialist PPC C. 2009

6. Child/young person with LLC & family Child/young person with LLC & family C. 2009 Implementationof Sugar Report

7. Child/young person with LLC & family Child/young person with LLC & family Hospital & community paeds C. 2009 Implementationof Sugar Report

8. Child/young person with LLC & family Child/young person with LLC & family C. 2010 Implementationof Sugar Report Hospital & community paeds

9. Child/young person with LLC & family Child/young person with LLC & family C. 2010 Implementationof Sugar Report Specialist PPC

10. Child/young person with LLC & family Child/young person with LLC & family C. 2010 Implementationof Sugar Report Specialist PPC

11. Introduction Blueprint: what we are aiming for Foundations: what SIG has already achieved

12. Introduction Blueprint: what we are aiming for Foundations: what SIG has already achieved Cement: databases and communication –CaNISC –DicData

13. Velindre Hospital Princess of Wales Royal Glamorgan Nevill Hall Royal Gwent Hospital UHW Llandough Y Bwthin Newydd Holme Tower

14. Hywel DDa Betsi Cadwaladr Powys Aneurin Bevan Cwm Taf Abertawe Bro Morgannwg Ty Gobaith Ty Hafan Children’s Hospital

15. CaNISC Links local providers PPC with –Tertiary centre at Children’s Hospital –Each other Data put in by clinicians in course of clinical record-keeping Can be retrieved by any network centre Over time, provides rich service development resource

16. CaNISC Needs some restructuring to accommodate children –Whom do we register ? –What data do we collect ? Needs funding

17. CaNISC Needs some restructuring to accommodate children: –Whom do we register ? Diagnosis in Dictionary –What data do we collect ? Needs funding

18. CaNISC Needs some restructuring to accommodate children: –Whom do we register ? Diagnosis in Dictionary –What data do we collect ? ACT dataset Needs funding

19. CaNISC Needs some restructuring to accommodate children: –Whom do we register ? Diagnosis in Dictionary –What data do we collect ? ACT dataset Needs funding SIG has funded first tranche

20. Ty Gobaith Ty Hafan Children’s Hospital Hywel DDa Betsi Cadwaladr Powys Aneurin Bevan Abertawe Bro Morgannwg Cwm Taf

21. Hywel DDa Betsi Cadwaladr Powys Aneurin Bevan Abertawe Bro Morgannwg Ty Gobaith Ty Hafan Children’s Hospital Cwm Taf

22. CaNISC Needs some restructuring to accommodate children: –Whom do we register ? Diagnosis in Dictionary –What data do we collect ? ACT dataset Needs funding SIG has funded first tranche

23. CaNISC Needs some restructuring to accommodate children: –Whom do we register ? Diagnosis in Dictionary –What data do we collect ? ACT dataset Needs funding SIG has funded first tranche Does not replace incidence/prevalence/service research

24. CaNISC Needs some restructuring to accommodate children: –Whom do we register ? Diagnosis in Dictionary –What data do we collect ? ACT dataset Needs funding SIG has funded first tranche Does not replace incidence/prevalence/service research DicData

26. 2010 CaNISC 2000 2020

27. DicData 2010 2000 2020

28. Compared with CaNISC, DicData: Will give some answers more quickly Is more flexible (eg can interrogate other databases) BUT: Will still take some time Relies on cohort data already gathered Cannot give individual data; just analyses

29. Are we further forward than in April ? Yes ! We have funding for: A managed clinical network A better specialist foundation (especially community PPC nurses) A better general paed WSI foundation The prospect of a communication/service development tool in CaNISC

30. CaNISC vs ACT mapping exercise CaNISC ACT mapping Question Who is out there not receiving services ? Who is already receiving services ? Who is registered ? All children with LLC All children referred to PPC services Dataset Modified ACT MDS (15 items) ACT MDS (17 items) Database software CaNISC Bespoke software