What is Palliative Care Voices?
Palliative Care Voices is an international network of people with lived experience of palliative care coming together and having the 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, including our families and informal carers, as well as those who are bereaved.
The network is owned and run by people with lived experience and 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 direct stakeholder voice (people with lived experience, i.e. palliative care beneficiaries, their carers and families) 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. We are giving them the platform to be heard. This includes asking for quotes, stories and videos for work and campaigns, sharing their stories at events and in 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 Worldwide Hospice Palliative Care Alliance (WHPCA) and from a founding member, Huyaam Samuels. Lucy began working with the WHPCA as a Patient Involvement Consultant as part of their direct stakeholders project in 2017, and this was the catalyst for the formation of Palliative Care Voices which was founded in November 2017.
How Does The Network Function?
The network is based out of a closed Facebook Group, providing a free and accessible platform for people to become involved. 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.
The Facebook Group can be accessed by clicking here – please note it 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 and YouTube for people to see what we’re doing and keep up to date with us. You can find our other accounts as follows: Facebook Page fb.me/palliativecarevoices; Twitter @PallCareVoices and YouTube by clicking here.