Concurrent Session 1
Speaker 1: Niki Read
Niki Read is a multi-disciplinary artist and community cultural development worker that has been a part of The GroundSwell Project since the early days. Niki, having run community based remembrance ceremonies for several years, started volunteering as an end of life community mentor 10 years ago and has since worked for 5 years as research assistant with The Caring at end of life research team at Western Sydney University. For the past 2 years Niki has been delivering grass-roots compassionate communities projects in the Blue Mountains and at Liverpool Hospital Palliative Care ward, where she also works as lead artist with the Creative Legacy project.
What does it take to keep us connected?
A Community Cultural Development project in an Acute Palliative Care setting.
The nature of hospital-based health care often means people become disconnected from their families and friends, and clinical referral processes lack supported transitions through diagnosis, curative care, palliative care, death and bereavement. It is our social networks that sustain and accompany us through these experiences and yet health care provision is designed without the patients community in mind. Liverpool Hospital Palliative Care ward and The GroundSwell Project have partnered together for 4 years under an MOU that puts people and their communities at the heart of the ward. The ‘Ward without walls’ project, built on public health palliative care principles, recognises that by getting involved in end of life care in inspiring and life affirming ways people and communities can learn about ageing, chronic disease, dying and death care. The aim is to reduce barriers, build capacity in community and enable palliative care services to be a part of the community, not separate to it. Over 50 people and 15 different local organisations, social groups, cultural facilities, schools and youth councils etc have been invited to contribute to life of the ward through attending informal events, and the sharing of meals. Maps of who and what matters to staff, patients and communities are being created and displayed, and local artists are in residence on the ward to create legacy artworks with patients, all of which highlight that we are all more than our disease, diagnosis or job title and invite contribution and connections between patients, visitors and staff. The insights of this project serve to demonstrate what role beyond clinical care an acute palliative care service might have, providing real life evidence of what works and what the challenges are. This will support other palliative services that may be looking to forge partnerships with communities using community development strategies.