How funders’ perspectives have helped

to shape the field:

The work of The True Colours Trust in the UK and sub-Saharan AfricaPaediatric Palliative Care Funders’ Meeting - 1 December

2012 - Roma - Italy

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

OverviewOverview

Our perspectiveOur perspective

Individual children and

families

Market/ Community of families

and professional

s

Sector/Infrastruct

ure

 

Policymaking(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 Our perspective cont’d

UK: Influencing PolicyEvery 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 Examples of how we have helped to shape the field helped to shape the field

UK: Encouraging innovation in service provisionA 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 often2.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 locality4.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 Examples of how we have helped to shape the field helped to shape the field

cont’d cont’d

Examples of how we have Examples of how we have helped to shape the field helped to shape the field

cont’d 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 services2.Research with UNICEF to identify children’s palliative care in three countries in sub-Saharan Africa3.Accessible information on international children’s palliative care

Examples of how we have Examples of how we have helped to shape the field helped to shape the field

cont’d cont’d

www.truecolourstrust.org.uk

Thank you