Aged Care Insite Issue 111 | Feb-March 2019 | Page 27

practical living Also, the other key thing that people like Allan Kellehear often talk about is the 95 per cent rule, so that 95 per cent of our experience when we’re dying or grieving is actually with our communities. It might be also by ourselves, but it often happens outside of institutions. It happens with our friends, with our families, with ourselves. Five per cent of the time we are connected to health services, and we need those health services. We need compassionate care from doctors and nurses to support us as we’re dying, because we often need symptom relief and other things. But what the public health approach does is try to give a bit more space for the social, because what we primarily do at the moment is think mostly about service delivery. So the Compassionate Communities movement is really thinking, “Okay, how does everyone have a role in end-of-life care? How does everyone have a role in grief and bereavement?” When we start to think like that, we start to think, wow, there are schools, workplaces, councils, sporting clubs, RSL clubs – there are all kinds of rituals, care and support going on in our communities that may not have the goal of supporting people after death, but every day those places step up to support people during illness, at time of death, and after that. They’re often there for longer, as well. If you’re a member of a sporting club, for example, you’re still a member while you’re caring for someone who may be dying, and you’re still a member after that person dies. So that sporting club and those people you’re connected to are an important part of your grieving process. The Compassionate Communities movement would say, “Okay. How is that sporting club supporting the person who’s grieving?” And there would be heaps of things they’re doing. We want to bring that to life a bit more and acknowledge that we’re all caring for each other. We’re all actually stepping up and taking responsibility. Over the last year, GroundSwell has been implementing this concept in eight communities around Australia. How does that work practically, and what reactions have you seen with the project? We really act more like a backbone to those communities. We put a shout-out to Australians to our networks and to other people who we know are starting to get interested in Compassionate Communities’ work, who were just starting to dabble in it or who actually were already down the track a bit. We said, “Well, we’ve learnt some stuff from the UK and some of the work they’ve done supporting communities. We would love to see more Compassionate Communities stuff grow in Australia.” As a result, we offered eight communities additional support, and we did that along with Western Sydney University. We’re learning lots of things. One of the key things is that there are many people out there who want to help. There are many people out there who want to see change in the way we do death and dying. And everywhere that has started Compassionate Communities’ work has had a community either rise up again, because they’re already kind of connected with the local organisation who got involved, or a new community has started to take hold and start to think about end-of-life care and how they do it best in their local area. There’s been a real variety of projects, and all of them have, over the past six months, invited people to come together and talk about it as a local community issue. It’s been pretty interesting watching that happen across Australia. I believe Bupa was involved in this scheme. Have you seen any interest from the government? The important thing to acknowledge is that there are lots of initiatives going on around Australia, that we aren’t the only organisation who support this work. Earlier, I think last year, the federal government funded some of the primary health networks to do some Compassionate Communities work, which has been an important development in the space. Yes, Bupa has supported this initiative over two years, which has been amazing. It really has been a champion of our grassroots work, which is quite something for a healthcare organisation. I think there’s change happening all around, and that’s really important to acknowledge, that it’s not just eight communities who are doing this work. It is happening all over the place. Some of it might be called Compassionate Communities and some of it might not be, but there is a massive groundswell of interest in end-of-life care and support, and how we’re going to change this experience for people in the community. Is this only applicable to palliative care, or can we transfer some of these ideas to aged care and increase elder literacy? Many of the initiatives are happening in aged care facilities. We currently have a project with Southern Cross Care that is about embedding community into an aged care facility to a greater degree. When someone moves into an aged care facility, they often lose their relationships, and they lose many of the things they love. That’s a massive loss. One of the things we’ve been working on with Southern Cross Care is, “Well, how can some of those relationships and connections be maintained despite moving into an institution?” That’s been really interesting work. I think next year we’ll have some interesting things to say about that. Holly, you’re GroundSwell’s national lead of the Compassionate Communities Project, and you’re involved in implementing some of these concepts in eight communities around Australia. Can you tell us more about that? HRS: GroundSwell is looking at the landscape of this work in Australia and recognising that it’s emerging as quite a viable strategy with which to implement public health palliative care. There are lots of examples of the work in the UK and Canada and in different parts around the world, but we decided we wanted to invest in that work here. So, how can we best support the movement to grow in Australia, and how can we learn from it? We launched the national Compassionate Communities forum, and it’s a bit of a practice group, I guess. A network of different communities around Australia that are giving it a go, and seeing what they discover, and what comes up as a challenge or pushback. That’s been going now for about six months. We launched in March and invited expressions of interest. We got about 30 different applications to be part of it. So that was pretty encouraging for us just thinking that there are that many communities in Australia that are interested and came to explore the work further. From that 30, we chose to work with eight. A steering group made that decision. It was based on having a wide spread geographically and a diverse mix of community demographics, so we could have more diverse results and see the impact in different ways from different groups approaching the work differently. Do you have to approach at a political level with some councils, or do you base yourself out of an aged care centre? How do the practicalities work? I guess that’s the beauty, and also the challenge, of Compassionate Communities’ work: there is no proper formula or blueprint that’s going to be successful everywhere. agedcareinsite.com.au 25