What is Palliative Care Voices?
Palliative Care Voices is an international network of people with lived experience of palliative care coming together and creating a platform to contribute to global, national and local palliative care advocacy.
Who are we?
We’re all people with lived experience of palliative care or of an illness that could benefit from palliative care, as well as families and informal carers, and those who are bereaved.
The network is owned and run by people with lived experience. Although we work with and have received some support from the Worldwide Hospice Palliative Care Alliance (WHPCA), we are an independent entity.
What do we do?
Palliative Care Voices exists to elevate the voice of direct stakeholders (that of people with lived experience) to allow them to be heard and to be involved in palliative care advocacy on the global stage, as well as at a national, regional and local level.
This includes collecting quotes, stories and videos for work and campaigns, sharing stories at events, in the media and online, matching them with opportunities such as speaking engagements or media work, asking for their advice on and input into materials, involving them in our Palliative Care Talks series and more.
Why Palliative Care Voices?
The network was founded by Lucy Watts, MBE, a prominent and vocal palliative care advocate from the UK, with support from the WHPCA and from founding member, Huyaam Samuels. Lucy began working with the WHPCA as a Patient Involvement Consultant as part of their direct stakeholders project in 2017. This was the catalyst for the founding of Palliative Care Voices in November 2017.
How Does The Network Function?
The network is based out of a closed Facebook Group, providing a free and accessible platform. People are contacted about work, asked for quotes and support and recruited for different campaigns or projects via that group. We have 74 members (as of December 2018) from at least 12 different countries, but hope to grow it to over 100 members and to expand into more countries by the mid 2019. Although not a formal aim, our members also support each other via the group.
Please note that the group is aimed at patients, carers and family members rather than professionals.
In addition to the closed Facebook Group, we also have a public Facebook page, a Twitter Account @PallCareVoices and a YouTube channel for people to see what we’re doing and keep up to date with us.
If you have direct or indirect experience of palliative care, or an illness that could benefit from palliative care, please join the Palliative Care Voices Facebook group.