An innovative, multi-level three-year project to increase the voice of direct stakeholders (people living with conditions that require palliative care now or may in the future) in South Africa and Ethiopia is set to start February this year.
The project will engage direct stakeholders to tell their story and speak out about the issues that matter most to them. It will be a model collaboration between international, regional, national and community-level groups, as well as individual patients and carers.
The stories will be recorded on video or audio, and disseminated to specific target audiences using the latest social media technology, as well as more traditional means, such as regional and national news media, organisational communications channels, community meetings, and direct advocacy with national governments.
Project partners are: The Worldwide Hospice Palliative Care Alliance (WHPCA), The African Palliative Care Association (APCA), the Hospice Palliative Care Association (HPCA) of South Africa and Hospice Ethiopia.
This project aims to increase access to palliative care as part of Universal Health Coverage (UHC) by providing people with a platform to bring attention to the issues that matter, and to educate others who might benefit from palliative care.
Previous research has identified a low demand for palliative care, and lack of political will as two main barriers to accessing palliative care. This project will address these two issues and should provide lessons for others to use worldwide.
This project is supported by an annual £40,000 grant from The Joffe Charitable Trust, a donor new to palliative care. All project partners are extremely excited to be working with this very well-informed and engaged donor.
The WHPCA would like to recognise existing and previous donors, the support of whom was instrumental in securing this grant.
The Open Society Foundations supported the work of the WHPCA Communications Manager to develop a global communications strategy for palliative care, which served as a model for the current project, and which will also allow for the lessons learned through the project to be shared internationally.
A grant from the True Colours Trust allowed the WHPCA to engage a specialist fundraising consultant, who identified The Joffe Charitable Trust as a potential donor and who led on the first stage application.
Huyaam Samuels, palliative care patient advocate, said: "This project will give direct palliative care stakeholders and patient advocates from South Africa and Ethiopia a platform on which they can speak, and demonstrate a model project that could be replicated across Africa and beyond.
"It gives us a sense of empowerment to be able to speak directly to health care decision makers. Governments and donors will be able to hear the inspiring stories of patients and their families and carers.
"They will hear our struggle and see how much of a difference our stories could make to others affected by life limiting illness. We are the people who have to live with the result of health care policy decisions, so we should be part of the discussions."
Dr Stephen Connor, Executive Director of The WHPCA, said: "We are very excited to have an opportunity to contribute to the growing body of knowledge on how to partner with direct stakeholders to effectively engage with policy makers and the public on the importance of access to palliative care as an essential, defining aspect of UHC."