How funders’ perspectives have helped to shape the field: The work of The True Colours Trust in the UK and sub-Saharan Africa Paediatric Palliative Care Funders’ Meeting - 1 December Roma - Italy

Who are we? What is our perspective? How have we helped to shape the field? Overview

Our perspective Individual children and families Market/ Community of families and professionals Sector/ Infrastructure Policy making (local/ national)

Consultation Research Roundtables Collaboration In grant-making e.g. The Waterloo Coalition In programme design e.g. Small Grants Programme in Africa Our perspective cont’d

UK: Influencing Policy Every Disabled Child Matters Campaign (EDCM) Coalition of 4 organisations, TCT funded since 2005 Main focus was disabled children but recognition, and inclusion of, children with palliative care needs Impact on the field: 1.Last UK government released an additional £680 million (over 3 years) for health and social care services for children with disabilities and palliative care needs (£470 million of this was ‘new money’) 2.The current UK government provided £800 million for short-breaks for children (over 4 years) 3.Lobbying to ensure the needs of these children, and their families are catered for in the re-structured National Health Service e.g. the new ‘Child Health Strategy’ to be launched in January 2013 Examples of how we have helped to shape the field

UK: Encouraging innovation in service provision A pilot of 24/7 community care for children with palliative care needs at East Anglia Children’s Hospice (EACH) - The True Colours Symptom Management Team Impact on the field: 1.Discovery that 24/7 care not used very often 2.Families only used ‘out of hours’ service 18% of the time, i.e. 97 days throughout the project period (at a cost of £8,450 over the 18 month period) 3.Developed new model of service provision, which will continue in this locality 4.Economic evaluation currently underway, EACH will use this data and the service model to advocate for uptake of the model across UK in new NHS model Examples of how we have helped to shape the field cont’d

UK: Improving the Evidence Base The True Colours Chair in Palliative Care for Children and Young People at University College London’s Institute of Child Health in partnership with Great Ormond Street Children’s Hospital Impact on the field: 1.Leadership for the sector 2.Collaborative studies to inform best practice and improve the evidence base 3.Unite research and clinical practice to improve children’s palliative care in the UK and beyond Examples of how we have helped to shape the field cont’d

International: Improving the sector’s infrastructure International Children’s Palliative Care Network (ICPCN) Impact on the field: 1.Consistent lobby with UNICEF and WHO to include palliative care for children in their policy services 2.Research with UNICEF to identify children’s palliative care in three countries in sub-Saharan Africa 3.Accessible information on international children’s palliative care Examples of how we have helped to shape the field cont’d

Thank you