Care and Loss: LGBTQ+ experiences in end-of-life care

Hear from our Head of Insight, Emma Jones, as she reflects on a highlight of our 2023 research work.

"Our project Care and Loss was a highlight of METRO’s research and training activities during 2023. We supported Greenwich & Bexley Community Hospice to develop its practice around LGBTQ+ inclusion, providing sexual orientation and gender identity awareness training. We also created a short film on people’s lived experiences of palliative care, engaging with communities to share their deeply personal stories.

"Contributors to the Care and Loss short documentary spoke about the care given at the Hospice as well as at other providers. They shared a number of largely positive end-of-life experiences that affirmed identity, as well as one shocking testimony that contrasted starkly with the others.

"These frank and intimate memories reveal the agency that partners have in advocating for their terminally ill loved ones: surviving partners who advocated for others, proactively shaping the inclusive care they received. The testimonies also show partners who have challenged discrimination even after death, and who continue to campaign for change with their allies. This campaign is vital. Compassion in Care, through its advocacy work, has reports of 423 instances of homophobic abuse.

"Jon Devlin, Associate Director of Partnerships as Greenwich & Bexley Community Hospice says: ‘The hospice is committed to ensuring that palliative care services for the LGBTQ+ community improve, and to working with other organisations so that together we can drive change. Our collaboration with METRO has been invaluable. Both the training they provided to our staff, and the film we jointly created with members of the community highlighting issues in care, are essential steps to ensuring better support is given to LGBTQ+ people across south London. We are proud of our work together and will continue to strive to improve awareness of issues faced by the community.’

"METRO is committed to addressing the issues which the Care and Loss film highlights. Along with Greenwich & Bexley Community Hospice, as well as other care providers, campaigners and researchers, METRO is calling for equitable, inclusive, palliative care.

"We want to expand our understanding of needs in more depth and address the absence of trans or non-binary people’s testimonies we had in Care and Loss. We recognise this limited representation across the LGBTQ+ spectrum only provides a partial story of what is needed. Despite our reach across the LGBTQ+ community, approaching this hugely emotive social issue took time to gradually build connections to the point where people were happy to speak about their experiences. More time was required for this project to build and expand on the connections we made. While some contributors spoke of gender diversity in their observations about others’ care, as well as anecdotes they heard in the LGBTQ+ community, as these were not first-hand testimonies we could not include them in a documentary.

"We want to further develop this community-engaged research and training for practitioners, and inclusive policy development with Greenwich & Bexley Community Hospice, as well as with  other organisations. Our contribution to LGBTQ+ needs in palliative care joins a significant movement of change that has been underway for some time in activism, practice, and research. For us at METRO Charity, the Care and Loss project has been an important stage on a new voyage within a profoundly important area of healthcare."

Emma Jones, Head of Insight.

You can watch Care and Loss on our YouTube channel.