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Dr Richard Hain Lead Clinician, Welsh PPM Managed Clinical Network

Paediatric and transitional palliative care in Wales. 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

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Dr Richard Hain Lead Clinician, Welsh PPM Managed Clinical Network

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

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

  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 Primary care Community paed nurses Oncology outreach Other outreach Special Schools Resources Hospices Hospital & community paeds Specialist PPC

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

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

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

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

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

  10. Implementation of Sugar Report Child/young person with LLC & family C. 2010 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. Royal Glamorgan Princess of Wales Nevill Hall Velindre Hospital Y Bwthin Newydd Holme Tower Llandough Royal Gwent Hospital UHW

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

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

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

  25. CaNISC 2010 2000 2020

  26. DicData 2010 2000 2020

  27. 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

  28. 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

  29. CaNISC vs ACT mapping exercise

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