Renai Dean Image by Ray Sizer, Shepparton News

Palliative Care VictoriaAn incorporated association and charity, we are the peak body for palliative care in Victoria and a member of Palliative Care Australia.

As at 30 June 2019:

Board Directors Dr. Barbara Hayes (Chair), Shannon Thompson (Vice-Chair), Arunesh Choubey (Treasurer), Rachel Bovenizer, Dr. David Brumley, Karen Conte, Jennifer Forsyth, Dr. Claire Hepper, and Kim Hider.

Members99 organisations and 98 individuals.

StaffHeather Stevens, Heike Fleischmann, Maree Chilton, Nora Fernandes, and Odette Waanders. We received valuable support from 8 part-time or casual volunteers.

Patricia cared for her husband, Peter, at home for most of his 2-year illness. Eastern Palliative Care (EPC) assisted with specialist nursing home visits and family support for four months before Peter received end of life care in hospital.

Our Strategic Focus

Palliative Care Victoria’s Strategic Plan 2018-2022 provides a clear

focus for our work.

Our Vision All people with a life limiting illness and their families are supported to live, die and grieve well.

Our MissionTo advance our vision through empowering leadership, capacity building and advocacy.

Strategic ObjectivesThis report provides an overview of our activities in relation to our four strategic objectives.

2018-2019 at a glance• Collaborated with 77 organisations, in addition to our palliative care members. • 17,000+ PCV resources distributed.• Our media coverage reached at least 2.4 million people. • Our capacity building included 48 sessions involving 766 participants.• 58,190 unique visitors to PCV’s website (28% more than last year). • We responded to 746 requests for information or other assistance.

“I had put my heart and soul, every minute of the day, into caring for Peter. After he died, I felt like a magnet had zapped the innards from my soul and I was walking in a mist,” Patricia says.

“I lost my soulmate, the love of my life, the carer, the arm around me, the shoulder to lean on.”

Patricia accepted offers of support with her grief from EPC. In the difficult early months, a trained volunteer accompanied Patricia on outings. Paula, a psychologist, provided monthly counselling sessions throughout the year following Peter’s death.

“The care and support I received made a big difference to me in my grief,” says Patricia.

Patricia

Advocacy and government relationsWe continued to advocate for $65M new annual funding to improve access for Victorians who require palliative care. We communicated with relevant Ministers and their advisors, as well as meeting with several MPs and writing to all Victorian MPs.

We welcomed the $72M increase in palliative care funding over 4 years announced in the 2019 Victorian budget. We also appreciate our regular meetings with DHHS.

We contributed to PCA’s National Policy Advisory Committee on a broad range of national policy matters. In Victoria, we contributed to COTA’s Ageing Alliance, ECCV’s aged care policy working group, and the Palliative Care Clinical Network.

Member engagement and feedbackWe responded to 333 requests for information or assistance from our members and provided our popular weekly newsflash. We visited 16 palliative care services, 5 in rural and regional Victoria. Staff from 21 palliative care services, 12 in regional and rural Victoria, attended education sessions organised by PCV.

Feedback via our member survey indicated 86% satisfaction with our overall performance in 2018. What they valued about our work included:

“operates with heart and integrity”

“the quality of advocacy material and political know how.”

“effective voice and resources for patients and carers”

“energetic work in capacity building”

Specialist palliative care benefits individuals and health services

Building connections and capacityWe engaged with 77 organisations outside the specialist palliative care sector, including 9 peak bodies and 15 health and aged care organisations. We provided a 2-day train the trainer session about palliative care attended by 21 aged care managers responsible for lifestyle, pastoral care and volunteer programs.

“Palliative care is not limited to the last few weeks of life as I thought. It is a longer-term relationship. You can build a rapport and trust that is very helpful.

The nurses from Peninsula Home Hospice Service help with my pain management and physical well-being, and liaise with my GP. Their counsellor supports my spiritual well-being.

I appreciate their intuitive empathy and gentle style. You know they care about you and they do it brilliantly. They provide helpful guidance and that has improved my situation quite considerably.”

Jock

Palliative Care Victoria | Annual Report 2018 - 2019

Last year Margot, my wife for nearly 60 years, became much more frail. Her kidneys were failing. She wanted to stay at home until she died. It’s much more comfortable to be in your own home. It’s as normal as you can get when you’re dying.

I was happy to care for Margot. But you need somebody to back you up. You give plenty of love and attention but if you haven’t got the skills, you can’t do the job properly. If Margot wasn’t sleeping or eating, or if she was in pain, I needed advice.

The Melbourne City Mission Palliative Care people have the right sort of humanity and pass on their expertise to the carer. They made it easier for me to care for Margot.

You’ve got to have somebody on the telephone that you trust and that’s what you get. When you get palliative care you get someone 24 hours a day that you can talk to. After hours there’s always a nurse on standby and you’re not alone. The care and the friendship that they give is a sort of love really.

Margot died at home in December last year. It hurts not having her. She was such a special person. It was a privilege caring for her. I am grieving now and the support I am getting from them now is marvellous.

John

Seniors and Carers EventsWe engaged in conversations about palliative care with over 100 seniors and carers at 6 Mingles and the Dementia Conference hosted by Carers Victoria and the Seniors Festival.

New consumer resources Our new leaflets about the process of dying, help for carers and families, and pain management have been popular since publication in October 2018.

The Chinese Cancer & Chronic Illness Society Victoria kindly translated our palliative care guide into Chinese. With VACCHO, we updated the palliative care booklet for Aboriginal and Torres Strait Islanders.

Supporting compassionate communitiesWe received very positive feedback from 19 participants from 14 community services who attended a 2-day education session on palliative care.

Moments that Matter CampaignWe collaborated with 8 palliative care services, 13 story participants and 5 creative suppliers to produce this community awareness campaign, including a website and Facebook.

Moments that Matter features moving, true accounts of personal experiences of palliative care. These stories are about love, joy, family, freedom, home, trust and purpose. They help to increase understanding about the positive and meaningful support palliative care provides.

Launched on 22 May, the campaign reached at least 2.4 million people in the first month and prompted positive interactions and feedback from a wide range of people and organisations.

Empowered consumers, carers and compassionate communities

Diversity-inclusive and diversity responsive palliative care

Collaboration and capacity building This year, PCV strengthened its engagement with 20 ethnic communities and also reached out to the leaders of 21 faiths who play an important role in their communities at times of illness and death. Few CALD spiritual carers had heard of palliative care and they responded enthusiastically to education sessions offered by PCV.

We facilitated illuminating conversations about “a good death, “what matters most”, “palliative care” and grief at 13 education sessions attended by 132 participants from ethnic and faith groups.

We supported the Serbian Community Association to provide education about the palliative approach in Serbian for newly recruited volunteers to increase the volunteer support provided to frail members of their community and their carers, including with grief and loss.

We also supported the provision of 20 education sessions in community languages attended by 375 participants in total. These were provided in Karen (Bendigo), Spanish (Gippsland and metro Melbourne), Vietnamese (Springvale), Greek (Brunswick) and Tigrinya (Footscray).

Only Ladies Seniors Spanish ClubJackie Quintana, Volunteer Coordinator of United Spanish Latin American Welfare Centre had a challenge on her hands: how to have a conversation about palliative care with women from her community, particularly when end-of-life is a topic generally avoided. She was delighted to find her audience, the Only Ladies Seniors Spanish Club, were responsive and engaged.

“We shared experiences, we cried together and we laughed too! They understood that quality of life can be maintained until the end,” she said. “I think they were really happy despite the fact we were talking about palliative care. I‘ve been able to transmit the message in a different way so they are not sad when we are talking. At the end, we received very positive feedback!”

Closer relationshipsWe fostered closer relationships and understanding among diverse communities and specialist palliative care services through seven visits to specialist palliative care services attended by 119 people from diverse organisations. For many, this was their first visit to a palliative care service. The feedback was very positive:

“It was a great opportunity to get a better understanding of specialist palliative care and to meet with their teams. It also provided the local ethnic community organisations with a platform to meet and know each other.” Frieda Si, Chinese Cancer & Chronic Illness Society Victoria

LGBTQI education session by SKEPSI organised by PCV for its ethnic partners

Palliative Care Victoria | Annual Report 2018 - 2019

Expanded, innovative and valued volunteering

National Volunteer WeekTo celebrate National Volunteer Week, we published stories from 25 palliative care volunteers to recognise and promote the difference volunteering makes.

CollaborationVisits to Managers of Volunteers in the Hume, Barwon and Gippsland regions helped to strengthen our relationships and collaboration.

Volunteering 2030: dead or alive provided the focus for our provocative and ideas-filled presentation at the Volunteering Victoria Conference.

Sharing innovations, resources and problem-solving makes regular participation in the Leaders of Health Volunteer Engagement (LoHVE) network very worthwhile.

Capacity buildingUsing the train-the-trainer approach to build capacity, we trained 40 participants in facilitating induction training sessions based on the Palliative Care Volunteer Training Resource Kit.

Our five Network meetings for Managers of palliative care volunteers provided helpful opportunities for collaboration, support and information sharing. We coupled these with education workshops on risk management, the National Volunteering Standards, performance counselling and critical reflection. Overall, 58 managers from 37 organisations attended these network meetings.

To increase our capacity to respond to community need, we trained four PCV volunteers to facilitate conversations about palliative care with community groups. We valued their assistance at five community events this year.

Ten issues of Volunteering newsflash received high levels of engagement and positive feedback.

Dick & Glenyse

I have been visiting Dick, who has had motor neurone disease (MND) for 9 years, since 2016. I am a trained volunteer with Palliative Care South East.

As soon as I met this lovely man, I realised he had come to terms with his illness. Dick has a positive attitude and loves meeting people.

Dick had no speech when I met him. He used his laptop as his main communication tool. He loved taking anyone on a journey around the world using Google Earth. He showed where he lived and went to school in Essex and where he worked around the world in his long career with the Ford Motor Company.

We also worked together to write his biography, which he proudly displays to visitors and is a useful way for new staff to get to know him well.

These days, I enable Dick to keep in touch with his family via weekly emails. I compose a reply, read it back to him for approval and help him to type the kisses and press the send button. The familiar sound of the email sending brings a smile to his face every time.

Dick is still bright, very brave and making the most of every day he has.

Financial Information

Our financial report as at 30th June 2019 compared with 30th June 2018

2019 2018INCOME $ % $ %Grant & project income 656,772 72% 619,674 72%Membership fees 86,707 10% 81,033 9%Products & services 24,123 3% 11,548 1%Donations 8,965 1% 6,659 1%Investment income 135,870 15% 138,481 16%Total Income 912,437 100% 857,395 100%

EXPENDITUREProjects 524,593 57% 313,289 41%Salary costs (excl. projects) 312,967 34% 292,903 38%Occupancy, office & other costs 83,676 9% 163,773 21%Total Expenditure 921,236 100% 769,965 100%

Net operating surplus/deficit -8,799 87,430 Other comprehensive income 39,709 32,905Total comprehensive income 30,910 120,335

Net assets 1,406,413 1,375,503

The Audited Financial Report for 2018-19 is available at http://bit.ly/PCV-Report.

Grants & DonationsWe greatly appreciate the financial support received during 2018-2019.

We received 24 donations totalling $8,965.

AppreciationWe wish to thank the Victorian Government, the Department of Health and Human Services, our members, partners, people who shared their stories, volunteers, staff and all who supported our work this year.

“The palliative care group came to support us. That was when I understood the true meaning of humanity. They felt for us deeply and helped us like a family. We trusted them because they treated us sincerely. With their help we gave Anahita the best quality of life for as long as possible.”

Ameneh

Palliative Care Victoria | Annual Report 2018 - 2019

Renai Dean Image by Ray Sizer, Shepparton News

My family and culture make me who I am today. Growing up our home and life was full of laughter, happiness and love. I was encouraged to be whoever I wanted to be, to believe in myself. I always wanted to be a teacher and I was fortunate to fulfil that. I have two beautiful children. My family are everything.

Dianne and 3-year-old Taylor spend their days in Melbourne waiting patiently on the heart transplant list.

Taylor suffered a heart attack at two months of age due to an abnormal heart rhythm that can lead to sudden cardiac death. She has been on life support twice, once suffering a debilitating stroke.

Colin, Dianne’s husband and paramedic, regularly travels five hours from their home in Robinvale to

Renai

Dianne & Taylor

When I was diagnosed with cancer, I did not want to talk about it. Cherie, my cousin, encouraged me to let palliative care come in. It is one of the best decisions I made. They are there for you and your family.

My experience with Goulburn Valley Hospice palliative care has only been positive. They are there for people who are dying but it is also well before then. It is not all about death.

I am where I am today because of my children and family and, in the background, palliative care.

The best thing is to live life and love your family and friends. Let people in. Let them help you.

The spiritual aspect of being Aboriginal and a Christian means in the Dreamtime I will be with all my family who have gone before me and who I love so much.

be with Dianne and Taylor, leaving behind their three children, four foster children and eighteen grandchildren.

Very Special Kids has been providing practical and emotional support for more than two years. This includes transportation, attending medical appointments, advocacy, and respite care.

“At the end of the year we think we’ll take Taylor home and continue to receive palliative care. We want Taylor to be a kid and do kids things; to know what it feels like to play with other kids, and to touch her feet to the grass and feel the prickles,” says Dianne.

Smiling, Dianne says to Taylor “we’ve got things to do, like scrapbooking and cooking and reading books!” Dianne recites a Mem Fox favourite: “Little one, whoever you are, wherever you are, there are little ones just like you all over the world.” Hearing these lines Taylor’s eyes light up and her hands wave exuberantly.

Level 2, 182 Victoria ParadeEast Melbourne VIC 3002T: (03) 9662 9644F: (03) 9662 9722E: info@pallcarevic.asn.auW: www.pallcarevic.asn.au

F: www.facebook.com/PalliativeCareVictoriaTwitter: @pallcarevicReg. Incorp. No: A0022429MABN: 88 819 011 622