Chair: Vanessa Eldridge
a. Newcastle Compassionate Communities: hard hats and hugs
Early in 2018 a consortium of interested parties from Newcastle submitted an application to be one of eight “Groundbreaker” communities in Australia, under the auspices of The Groundswell Project. This application was successful and the “ComComNewy” group would embark on a journey that includes a community development project and a research component managed by Professor Debbie Horsfall and the University of Western Sydney. The major requirement from our initial application was to hold a public forum in November 2018, that would engage with the local community provide direction to further build and support this work. A world-Café forum for 140 was held and identified:
The need for a directory or service map than can assist people who are sick, carers, dying or bereaved. It can be technology based, but it needs to be available in paper version as many people do not use technology. Advice that health care workers and our community need to understand and start talking more honestly and openly about advance care plans, sickness, death and dying. The participants identified a need a safe place to go to talk about death, dying and bereavement whether it be a café or another space, it needs to feel welcoming and safe – and should be available for the community at least once a month – it needs to be well advertised. Overall the community feels satisfied with palliative care services at our major hospitals and felt that we can all build our own communities to better support each other. People need to feel heard and need to share their story.
The initial response to the forum was to establish the bereavement café, a dying to know talking series in conjunction with a cemetery and historical society and scoping for a website and directory. An update and evaluation can be shared at conference with lessons learned.
b. Taking it to the streets
Background: In the past conversations about death and dying and rituals surrounding them often took place in religious and faith communities, or within extended families and friendship networks. With the demise of many religious and faith communities and the breakdown of many marriages and family life, opportunities (and skilling) for these conversations and rituals have also diminished. With increasing pressures on health services, it has never been more important to facilitate partnerships between acute & primary health settings and, as part of this to reanimate the connection/role of religious and faith communities, as well as to provide new opportunities (people and places) for conversations about death, dying and bereavement support, to take place in an increasingly secular setting.
Aim/Actions: Our Aim is to develop a model by which we will initially recruit, train and supervise 100 'compassionate listeners' to serve in ten (10) community spaces across the City of the Gold Coast to provide free, non-judgemental listening and support to people who wish to talk about death and dying, or those experiencing grief. In so doing, we also will seek to reanimate links with religious and faith communities around these issues, to broker better referral pathways from acute to primary settings (including with values based residential aged care provides) and to explore a range of 'safe places' for these conversations to take place.
As we are currently developing this model, and plan to implement it mid-2019, we don't currently have any findings, but we are hoping that by the time of the Presentation we will have a story to tell.
Whilst the impetus for this initiative has come out of the public health, palliative care, hospice space, it is connected to a more broad-based strategy for reanimating communities within the aspiration of the Charter for Compassion - Compassion Cities initiative, which is a multi-sectorial approach to creating compassionate cities, very much in line with the aspirations and values of PHPC and Compassionate Communities Network in Australia, and connects with a range of initiatives being trialled across the country. It is hoped that, in this presentation, we will be able to identify the points of connection and differentiation in this shared vision and work.
c. Our Compassionate Community, developing networks of care with willing villagers and primary health providers
In 2018, the Nepean Blue Mountains Primary Health Network, The GroundSwell Project and Western Sydney University came together to address local issues regarding end of life care and planning. Recognising that end of life conversations need to happen well before times of crisis the resulting project, ‘Our Compassionate Community’ Blue Mountains has four aims:
1. To develop and implement compassionate communities in a primary health care setting,
2. To build networks that support and dignify a person’s dying and death,
3. To improve the death literacy of the general community including in General Practice and
4. To strengthen pathways between the civic community and health professionals.
The project is in its second year of practice and is led by a community development worker. In year one we built connections and rallied passionate people within the community, including across the health sector. Currently we are establishing the role of a Health Connector in a General Practice to further build bridges between primary healthcare providers, community organisations, individuals and their friends, family, workplaces, neighbourhoods etc. The Health Connector is working closely with a team of local community connectors mobilised in order to further develop networks of care. Results of the Death Literacy Index, will provide fundamental information to support the project aims and the work of the health connector specifically.
In this paper we will discuss the barriers and opportunities encountered along the way in addition to highlighting the potential of such a community centred approach. We hope that implementing a compassionate community approach in such a way, will enable us to highlight what works and where the challenges lie in bringing this program, developed in the UK, to Australia. The findings could be useful for other Australian communities wishing to establish similar models, at the same time as further strengthening community action and networks of support locally.
d. Better than Sex: Participating in the Tasmanian Care Beyond Cure program
Dr. Kitty Vivekandanda and Dr. Mayumi Purvis
Participants’ experiences in Care Beyond Cure program
This paper presents findings from participants in a Compassionate Community in Tasmania called Care Beyond Cure.
How the Care Beyond Cure program has shaped participants’ palliative care journeys was explored.
The qualitative research design involved feedback surveys, semi-structured interviews and focus groups using photo-interviewing.
Participants’ diverse experiences in participating in Care Beyond Cure will be presented through stories, words and images.
Conclusions and applications to PHPC
Choice and control, compassionate care and community connection were most valued by participants.