Building a global movement of direct stakeholders as advocates for palliative care

Direct stakeholders in palliative care are defined as 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.

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 news ways to address this.

We will engage direct stakeholders throughout the project to work towards meaningful and impactful leadership across this project and palliative care advocacy globally.

The project was developed in response to the growing recognition of the critical importance of the voice of direct stakeholders and those with lived experience in creating social movements and affecting meaningful change.

The development of the project has been fully informed by the experience, knowledge and wisdom of Lucy Watts MBE and the views of indirect, direct stakeholders and advocates who participated in Claire Morris’ Clore Social Leadership provocation paper and MSc in Development Management – with the full support of the Worldwide Hospice Palliative Care Alliance (WHPCA) staff and the board.

As part of this project we intend to be fully transparent. We have set up a web page which will track progress and reporting against our objectives and project plan.

More documentation will be added to this page as we go along, including a monitoring and evaluation plan which will be updated for all to see.

We are determined to share all learning, successes as well as challenges to benefit those working on advocacy for palliative care and potentially other health related issues.

‘Nothing about us without us’ – the time has come for direct stakeholders to be included in all aspects of advocacy activities from project planning and budgeting to implementation and monitoring.

Shortly we will be recruiting a number of change agents and a direct stakeholder consultant based in a low and middle-income country so keep an eye out for these opportunities.

A shout out to Case Gordon from the IMAXI cooperative for being a long-standing and strong voice on this issue and inspiring us to do better!

And a massive shout out to Jennifer and Duncan at the Open Society Foundations for supporting and advising on project design and funding this!

This project is all about collaboration, broadening our networks and looking at who speaks on behalf of whom so we look forward to working with as many of you as possible.

See more information about the project below and please don’t hesitate to contact us if you want to get involved or want to know more.

Lucy Watts (MBE) – Direct Stakeholder: lucyalexandriawatts@hotmail.co.uk
Claire Morris – Global Advocacy Director: cmorris@thewhpca.org
Kate Jackson – Communications Manager: kfrancklin@thewhpca.org.

Project information: Building a global movement of direct stakeholders as advocates for palliative care

Timeline: November 1 2017 – February 28 2019

Project summary

We aim to strengthen the voice of direct stakeholders and increase their impact as advocates to improve access to quality palliative care worldwide.

We will do 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 low and middle income countries. We will develop and implement an output-oriented communications plan to maximize the reach of these stakeholders’ voices, and to facilitate their contribution to global advocacy. We will also establish 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. 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.

Project objectives

To support a minimum of 4 initiatives in different low and middle-income countries through an open grants process to enable the impactful engagement of direct stakeholders in palliative care advocacy
To develop a representative structure and mechanism to engage with and reach large numbers of direct stakeholders already participating in organised networks who are potential palliative care advocates
To improve the engagement of people living with life-limiting conditions in the governance and implementation of WHPCA activities – including advocacy – and on the board.
To provide the platforms for people living with life limiting conditions to tell their own stories and to facilitate their contribution to global advocacy
To share the process, learning and results of the entire project to be utilised by others
To develop a member owned and led WHPCA advocacy strategy

Key deliverables

$60,000 distributed to groups of direct stakeholders for activities in at least 4 countries to demonstrate new ways to increase the voice and impact of direct stakeholders for palliative care.
The existence of an international committee of direct stakeholders representing a broader network of potential palliative care advocates
A review and implementation process for increasing the engagement of direct and indirect stakeholders in WHPCA activities, including the appointment of a person living with life-limiting conditions as a board member.
Final learning report and set of principles on engagement to be signed onto by palliative care organisations.
A communications and marketing plan for the implementation of the grants and learning
10 articles published on ehospice and WHPCA website
5 articles on non-palliative care sites, 5 podcasts and/or video sharing voice of direct stakeholders and an archive of open access communications materials to be used by advocates worldwide
Increased engagement on social media.
An active Facebook group used by direct stakeholders
A member owned organisational advocacy strategy for WHPCA.

Expected outcomes

Increased engagement of direct stakeholders in palliative care advocacy in at least 4 countries
Increased communications between organised groups of direct stakeholders and palliative care organisations and an extended outreach to groups of people living with conditions globally
Improved engagement of direct and indirect stakeholders in WHPCA activities and governance
Improved understanding and commitment to the principles of meaningful engagement with direct and indirect stakeholders by palliative care organisations and modelled by WHPCA.