What is Palliative Care Voices about? 

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.

After the first meeting of the PCV group which was a webinar led by Helena Davies, a short survey was circulated to an email group of individuals with lived experience of PC (PWLE) asking how individuals felt able to contribute to the work of PCV. A summary of the survey results can be found here Palliative Care Voices surveys. Everyone who responded wanted to be part of a group which had zoom meetings for mutual support and education. There were a number of people who were willing to contribute their own stories in writing or film and these will be published on the website so that we can promote an understanding of what lived experience of palliative care is like. We will also be exploring other ways in which these stories can be used as part of meaningful engagement of PWLE. It is critical that PWLE contribute to advocacy in a meaningful way so that their voice can have the impact it deserves. One important way in which PWLE can contribute is through interventions at HLM and the WHA. These interventions can be made in person but there are also opportunities to provide input virtually, though a written intervention or through a video recorded in advance.
PCV is a small group at present which we hope to grow by awareness raising on the website, in the newsletter, in e-hospice, through World Hospice Palliative Care Day and through word of mouth. More members will increase the opportunities for meaningful engagement of PWLE.