1. Paediatric palliative care: Welsh policy changes 2009 Dr Jo Griffiths Paediatric palliative care lead, ABM university NHS Trust Disclaimer: Whilst every effort has been made to ensure that the information in this presentation is accurate and referenced the author does not accept any responsibility for the use by any third parties.

2. Paediatric and transitional care in wales Key documents –Report of the palliative care planning group (sugar report) 2008 –Sugar implementation report –Children & young persons specialised services project (CYPSS): Children’s palliative care.

3. Sugar report principles Patient need Fairness of service Evidence based Consultant led clinical team 24 / 7 care Ability to live & die at home Children & teenagers / transition

4. Improving service provision Specialist palliative care : tertiary specialist Named paediatrician for each LHB / trust in Wales 5 Specialist nursing posts Managed clinical network of professionals 2 Welsh Forums : Support for all professionals Funding for training : Diploma / MSC Cardiff

5. New Consultant sessions Existing Tertiary specialist New palliative care nurse specialist Existing palliative care nurse specialist

6. IT infrastructure CaNISC Cancer network IT system accessible in adult units and hospices Extension planned to paediatric palliative care –Data collection –Clinical records access First expansion – University hospital of Wales & Childrens hospices.

7. Patient held cards Acknowledge registration on CaNISC Record the CaNISC number of the patient. Provides the out of hour’s helpline number. Demonstrate consent data entry onto CaNISC and handing over of the number by the patient gives permission for the data to be accessed.

8. CALL Helpline 0300 number – accessible by families & professionals wherever they may be Dedicated palliative care call line Link to CaNISC Point of contact for information & advice 24 / 7 CALL – community advice and listening line – Piloted in April 2009 ( adult services)

9. Independent evaluation

10. Where are we now? Identifying lead paediatricians in each LHB Nursing job descriptions and adverts going out Funding for Training available Established palliative care forum Growing managed clinical network

11. Forum & MCN Childrens advanced care plan – Wales wide but locally owned Education sessions Transition work stream Mapping & data collection

12. Challenges How do we best serve the rural population? – e.g Powys Current financial climate Restructuring of existing services to accommodate children – e.g CaNISC Transition working with adult colleagues Improving the general paediatric and GP foundation Growing CCN teams Support for bereaved families Establishing 24 / 7 working.

13. Diolch yn fawr (Thankyou)