Why is it important to get direct stakeholders to engage with government and decision makers? One good reason is what Huyaam Samuels, a palliative care patient advocate from South Africa has said:
“We are the people who have to live with the result of these decisions, so we should be part of the discussions.”
“Direct stakeholders” in palliative care are the people living with and those affected by life-limiting illness. In some contexts, the definition is extended to include people with conditions that may require palliative care in the future and those who are in older age and approaching the end of the life cycle.
People with life-limiting illnesses and in need of palliative care are best placed to speak to the needs and the necessary change required to make palliative care services accessible to all.
The “Patient Power” Project is a 3-year multi-level communications initiative that seeks to strengthen the voice of patient advocates, also known as direct stakeholders, in palliative care and to increase their impact as advocates to improve access to quality palliative care in two African countries, i.e. Ethiopia and South Africa.