I work with the Worldwide Hospice Palliative Care Alliance as an Independent Consultant on a casual/freelance basis.
This includes as a Higher Income Country (HIC) Patient Involvement Consultant as part of the Direct Stakeholder Engagement in Palliative Care Advocacy Project which ran from November 2017 to February 2019. This project sought to do multiple things:
- Improve direct stakeholder engagement in palliative care advocacy generally (of which Palliative Care Voices was an offshoot);
- Administer a grants programme to organisations in lower income countries to improve palliative care patient and carer engagement in advocacy and organisations;
- Evaluate the WHPCA’s governance;
- To recruit a direct stakeholder representative on the WHPCA board;
- To create an international palliative care direct stakeholder committee.
The project was a success and Palliative Care Voices, an offshoot of the Direct Stakeholder project, continues its work beyond the project and we are currently seeking further funding to continue this work and to develop the Palliative Care Voices network.
I include below the information about the project that was on the WHPCA Website for the duration of the project.
“We have launched a project to strengthen the voice of direct palliative care stakeholders and increase their impact as advocates to improve access to quality palliative care worldwide.
We believe that the voice of direct stakeholders is critical to increasing the impact of palliative care advocacy so better care is available to more people who need it. At the same time, in many settings direct stakeholders have not being given the opportunities to speak out and participate in all stages of palliative care advocacy activities. We are trying to find some new ways to address this.
Who are direct palliative care stakeholders?
People who are currently living with conditions that require palliative care now or may require it in the future and those who are in older age and approaching the end of the life cycle.
Project aim: To strengthen the voice of direct stakeholders and increase their impact as advocates to improve access to quality palliative care worldwide.
Key project activities
We are doing this by delivering a grants process which will put resources into the hands of direct stakeholders to develop and deliver their own solutions to raising their voices for increased access to palliative care in LMICs.
We are developing and implementing an output-oriented communications plan to maximize the reach of these stakeholders’ voices, and to facilitate their contribution to global advocacy.
We have established a committee of people drawn from existing organisations led by direct stakeholders to develop and deliver the grants programme in collaboration with WHPCA staff.
In addition, we will work with direct stakeholders to review the engagement of direct and indirect stakeholders in all WHPCA governance and activities and implement recommendations.
Our aim is to improve the power balance and dynamics and look at who is speaking on behalf of whom to develop a more impactful social justice movement on palliative care in Low and Middle Income Countries and worldwide.
We also aim to share our learning widely with direct and indirect stakeholders and the wider community including palliative care practitioners, healthcare workers, policymakers and people working with or interested in health and social justice.“