Amplifying the voice of patient champions in palliative care

Categories: Community Engagement, Featured, and Policy.

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.

Patient Power validates the adage ‘Nothing about us without us’ as a call for direct stakeholders to be included in all aspects of advocacy activities from project planning and budgeting to implementation and monitoring.

Leveraging Patient Voices around Universal Health Coverage 

Related research has identified a low demand for palliative care and lack of political will as two major barriers to accessing palliative care. This project is addressing these two issues and providing lessons that can be used by others in Africa and beyond.

In the lead up to 2019 UN High Level Meeting on Universal Health Coverage on 23 September, Patient Power is piloting the mobilisation of patient voices in Ethiopia and South Africa to engage policy makers around a greater commitment to palliative care at the national level.

The project derives its patient-centered approach from the experiences of many social justice movements over the years that have shown that people affected by an issue are best placed to lead any initiatives that would achieve meaningful and impactful social change concerning that issue.

The Patient Power Project shifts the power to enable and strengthen the voice of direct stakeholders, and to support them to become involved, as much as they want or are able to, in decisions about their care, thereby giving them a voice in what government services they receive.

The project, which places an emphasis on digital media, facilitates capturing of patient stories on video or audio, and dissemination to specific target audiences using the latest social media technology, and through more traditional means, such as organisational newsletters, national news media, community meetings, and direct advocacy engagements with governments to garner support for Universal Health Coverage.

The various communication materials developed, experiences and lessons learnt from the project will be disseminated to other Anglophone African countries with the interest and potential to use them to engage their direct stakeholders and governments on the palliative care agenda.

The 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 important project is made possible by the kind support of The Joffe Charitable Trust.

Find out more about the project:

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