Annual Report Palliative Care South Australia Inc 2014- 2015 It is a great pleasure to once again present the Annual Report of Palliative Care South Australia Inc. In the last 12 months we have continued to work towards the goals set we set out in our 2104 -2016 Strategic Plan. However, this year we have adopted a new approach and incorporated Die-alogue cafes into our public communication and community engagement strategy. This is a model that has already been well received in other parts of the world, and Die-alogue cafes have been held throughout the year in different locations across Adelaide, with the number of people attending increasing as we go. The cafes provide a safe, informal but facilitated environment for people to share their stories, seek advice and simply feel OK to talk about death and dying over coffee and cake. At times, as well as local community participants, people working in palliative care have attended with the aim of taking the model back to their own communities. We have also conducted Advance Care Planning workshops across metropolitan Adelaide using the premises and hospitality of Alfred James Funeral Directors. The workshops have been conducted in two parts, a week or so apart, to allow people time to think about their Advance Care Directive in more detail between sessions and look at how they would actually go about completing the Advance Care Directive form. The workshops have attracted a range of people, from professionals with an interest in the process, to members of the public who simply want to learn more about Advance Care Directives. I would like to thank Dr Susan Bardy who drew on her experience as a palliative care nurse and researcher to lead these workshops. In April, a Market Research Report was prepared for PCSA by Stellar Marketing which was very positive about our communications strategies. A key part of our information and communication strategy is our Web site, which has maintained its popularity. Monthly Google analytic reports track website traffic and indicate traffic is steadily increasing. In 2011 monthly traffic sat at around 1245 unique visitors per month. Today we are seeing over 2200 unique 1

visitors per month. The PCSA Web site was commended by an interstate Senator during National Palliative Care week as being the most informative site about palliative care. The weekly PCSA e-Bulletin is also an important and highly valued communication tool. It is currently sent to 1565 inboxes representing both members and others including MP’s, aged care facilities, people who have undertaken a PEPA placement and public with an interest. Our presence on Social media, through Facebook particularly, was identified by the market research as an important tool in reaching sections of our community which could be strengthened. (And some of the dinosaurs amongst us were recently inducted into the use of a platform like Twitter to widely disseminate information during the National Palliative Care Conference in Melbourne.) Stellar market research also found that our brochures and booklets were highly valued. One of the major tasks undertaken this year was to review all our publications. At this point I need to acknowledge another volunteer, Kara Baragawanth, who re-typed all the PCSA booklets, resources and brochures in readiness for their review and updating. The revised and renewed versions, with our new brand look, were launched at a small celebration during National Palliative Care week in the last week of May. We also continue to produce three editions of Palliative ProfileSA during the year in the belief that the newsletter, in hard copy, sitting around on tables in tea rooms and other venues, can reach people who do not spend their time on-line. Media This year has been a very positive one for media discussion and coverage of palliative care events. Our CEO, Tracey Watters and David Lawlor from Alfred James Funerals were interviewed at length on radio about the Die-alogue Cafés, while Assoc Prof Greg Crawford was invited to a series of in depth discussions on local ABC radio about palliative care for people with a range of cancer and noncancer terminal illnesses. National Palliative Care Week also saw good coverage in print and with air time in South Australia, and we believe we are seeing a shift in the discussion about palliative and end-of-life care issues in all sources of media. Palliative Care State Conference Although the biennial National Palliative Care Conference was scheduled for September 2015, it was decided to continue with a one day South Australian state conference earlier in the year to maintain the momentum of the last couple of years. The State conference, organized in collaboration with the Palliative Care Clinical Network, and this time with the involvement of the Renal Network, was held on Friday 22nd May, just prior to the start of National Palliative Care Week. Three hundred and twenty people attended, with key-note speakers Professor Merryn Gott, New Zealand, and Dr Frank Brennan, Sydney, contributing enormously to the success of the day. There are a great many people who contributed to the conference, the organizing committee, local presenters, chairs, our MC, and sponsors who have all been thanked, but I do want to acknowledge

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here the support of the Northern Communities Health Foundation Visiting Professor Programme which brought Professor Gott to Adelaide, and allowed us to ‘borrow’ her time. At the conference, National Palliative Care week was highlighted with a National Palliative Care Week table stocked with Palliative Care SA branded products to support delegates in hosting a palliative care event. As it has now been announced that the 2017 National Palliative Care Conference will be held in Adelaide, our plan is to run another State conference in 2016 and then move the state meeting to a biennial format as well. Projects For a time, funding for the very successful Program of Experience in the Palliative Approach (PEPA) was in doubt while the Federal Government reviewed a number of the National Palliative Care Programs. However funding has been renewed until June 2017, and we have now been joined by a new PCSA staff member, John McMahon, who as project and educational officer will help carry the project through. I would like to acknowledge the work done by our previous project officers, Janine Brett (PEPA) and Teresa Onerato (PEPA and the Aboriginal project), and thank them for all their hard work. The National Decision Assist project has continued in its roll out, although utilization of the National Helpline has been low. It is hoped that the local workshops, and the GP palliative care educational components, including a phone app, will support better palliative care in Aged Care settings. The South Australian Palliative Care Volunteer project completed its funding and has now moved into a sustainable model with training to be continued by the Volunteer Coordinators/Managers of the three Level 6 specialist palliative care services through to 2017 under a shared facilitation arrangement supported by an MOU. Potential volunteers from country hospitals and Residential Aged Care Facilities have now been able to participate in the training for a small fee. A very successful Volunteer Day was held at West Beach in November, 2014, and the plan will be to continue these biennial events. PCSA’s Reconciliation Action Plan has continued, with a number of significant bi-cultural activities. Staff have participated in Close the Gap day, NAIDOC Week, the Reconciliation Week Breakfast, and contributed to the revision of the Advance Care Yarning Aboriginal resource. A planned Bi-cultural Forum had to be postponed, but is re-scheduled for later this year. World Hospice and Palliative Care Day in October presents another annual opportunity to raise awareness of the important role hospice and palliative care have in health. In recent years we have hosted a movie screening and morning tea, and in 2014 we screened Love in our own time, an Australian documentary film about caring for adults facing death.

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Palliative Care services and Transforming Health I doubt if anyone in South Australia can be unaware of the government’s Transforming Health proposals. Focused on aggregating and streamlining acute hospital services to improve performance in key areas and reducing avoidable deaths, it has paid little attention as yet to those many people who die in our hospitals whose death is unavoidable and to those people who would wish to die at home if community services were better co-ordinated. There has been strong ongoing advocacy to continue those end-of-life projects that have been commenced within hospitals, and to better fund and co-ordinate community services to deliver palliative care. PCSA has been involved in discussions around the SA Health GP Partners programme which has been funded to deliver 400 GPs up-skilled to provide shared palliative care in the community. However there is still no corresponding programme for access to nursing, equipment or pharmacy Other factors have impacted on palliative care delivery such as the changes incorporated in the Federal Government Community Home Support Program (previously HACC), leading to difficulties integrating palliative care for people both at home and in RACF. The newly established My Aged Care website has fallen very short of its objectives causing bottlenecks for many and ironically new business opportunities in ‘brokering’. Closing the Medicare Locals and replacing them with a larger single metropolitan network has also meant change and only with time will we learn if it will deliver positive consequences for palliative care at the primary care level. Dismantling of the Clinical Networks as part of SA Health’s re-organisation, has meant the loss of an important setting for communication between PCSA and Palliative Care service providers. In this environment it is even more critical that PCSA has an effective working relationship with its clinical Advisory Panel. To facilitate this, the Board has proposed changes to the Constitution relating to the Advisory Panel and has also reviewed the Terms of Reference for the panel. Changes in SA Health have also slowed the work to develop and endorse a statewide Advance Care planning document along the lines of PCSA’s Palliative Care Plan to replace the multitude of confusing facility developed documents. Given this change and uncertainty it is clear PCSA must continue to strengthen its advocacy efforts to ensure palliative care remains a priority in all health environments and available to all who need it. It is heartening that the PCSA contract with SA Health has been renewed, albeit only for the current 12 months. National palliative care issues Palliative Care Australia appointed a new CEO, Liz Callaghan following the resignation of Yvonne Luxford at the end of 2014. Government funding to PCA has been reduced, with the National Standards Assessment Program moved to an on-line presence only. PCA has been charged with focusing on increasing community awareness and increased community engagement..

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Assoc Prof Greg Crawford and CEO, Tracey Watters continue to represent PCSA on the National Policy Advisory Committee, while Tracey is very active in the national EOs Forum.

PCSA Board Elizabeth Ho, formerly Executive Director of the Hawke Centre was co-opted to the Board in February. She has brought a broad range of skills to the Board and will help strengthen our community engagement focus This year we are looking at significant Board elections. Our new governance structure was adopted in 2010, and a new skills-based Board replaced the unwieldy Council structure. Board members are eligible to serve two 3-year terms, but to stagger the change of Board members, half of the original members served a 2-year then a 3-year term. So this year we farewell three people who have made an enormous contribution to PCSA over these last 5 years. I want to thank them all: Amanda Bourchier with amongst other things, her intimate knowledge of RAP programs, the irrepressible David Brownie, who may be better known to you as MC extraordinaire at various fora and at the state conference, and of course our Treasurer and for a time, Deputy Chair, Phil Plummer. Their wisdom, experience, and common sense have contributed enormously to setting us on a secure path for the future. Thank you all for all your support for PCSA and for me personally. And at the same time I want to thank our continuing Board members for their ongoing contributions. They are all acknowledged at the end of this report, but I want to particularly acknowledge Deputy Chair, Greg Crawford who has deputized for me at a number of events including taking on a role at NPAC, and very notably the State Conference. Other PCSA activities There is no way this report can fully represent the breadth and extent of the activities that have been undertaken in the last year, largely by our CEO, Tracey Watters. She has worked on the Decision Assist project, representing PCA Member Organisations, she has been a member of the Palliative Care Clinical Network Steering Committee, she has worked with the Northern Adelaide Local Health Network End of Life Working Group, engaged widely with multicultural communities, some of whom identify by ethnicity, others by language and yet others by religion. She has met with politicians, presented on bicultural issues, engaged with Aged Care organisations, as well as being instrumental in delivering all the other things that this report details! I can only extend a heartfelt thank you to our staff from the Board, PCSA members, and all who benefit from their work. Sponsors I would also like to thank our major sponsors, Alfred James Funeral Homes for their ongoing support of so many of our activities, and also Mayne Pharma our major Conference Sponsor.

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Presentation to retiring Board members Mary Brooksbank 27.10.15 Chair, PCSA

PCSA Board Members Dr Mary Brooksbank AM (Chair) Assoc Professor Gregory Crawford (Deputy Chair) Mr Philip Plummer (Treasurer) Mrs Wendy Barry Ms Amanda Bourchier Mr David Brownie Dr Peter Ford Ms Elizabeth Ho OAM Ms Rosemary Wanganeen

Staff Tracey Watters CEO Sally Harrison Financial Administrator John McMahon PEPA Manager/Educator

Volunteers Dr Susan Bardy – Advance Care Directives workshops Kara Baragawanth - typed all PCSA booklets, resources and brochures in readiness for their review and updating

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