Who are Voices for Palliative Care?

Christine has experienced being a carer for several family members with serious illness (with malignant and non-malignant disease) and palliative care needs, most recently her sister with cancer. Before retiring, Christine worked as a palliative care nurse consultant for 27 years where she was involved in providing palliative care for patients, their caregivers and family. She is informed in service and policy development at a local and national level, including as a consumer representative for Palliative Care Australia. Christine believes it is essential to ensure consumers' and carers' views and experiences are heard and integrated into research, policy and service improvements.

Simon cared for his young son, Marmaduke, and wife Millsom, through parallel terminal cancer journeys. His family's experience of adult palliative care was restricted in scope, length and flexibility, while the paediatric palliative care received was extensive, responsive and supportive over a long period in hospital and at home. Since 2015, Simon has spoken to politicians, health professionals and the public on the importance and impact of palliative care for patients, families and community. As a consumer representative he has partnered with Queensland Health, The Royal Children's Hospital Melbourne, and Palliative Care Australia, and Safe Care Victoria. Simon's hope is to contribute to the continued growth, promotion, and acceptance of palliative care.

Catherine has been a carer for different family members with serious (malignant and non-malignant) illness, including most recently her brother who was diagnosed with oesophageal cancer. Based in Tatura, regional Victoria, Catherine has worked for 35 years in nursing and clinical leadership roles across palliative care, emergency medicine and intensive care. In her role Catherine is responsible for nurse education and skill development. Catherine is also actively involved in a broader role of promotion of and education about palliative care in the community and advocating for people with palliative care needs.

Avi cared for his wife Gita who lived with cancer for 12 years. This presented a whole new set of challenges as he worked to navigate and juggle so many different roles. Yet while he faced challenges, Avi believes there were also incredible rewards in being a carer for his wife. Avi has now trained as a grief counsellor to support other carers. He believes it is important for people to understand more about what palliative care can offer for people with serious illness, their carers and family. For the past 18 months, Avi has been actively involved in providing a carer voice in palliative care research and service development.

Adrienne has personal experience as a carer providing care at the end-of-life for her husband with dementia. Professionally, Adrienne has experience as an accreditor for aged care, palliative care and acute health services. She believes there is much to be done to expand and improve palliative care services to provide greater access for people with serious illness. Adrienne believes we need to make palliative care a topic 'for now', ensuring it is a priority in everyone's thinking. She is passionate about raising community awareness and understanding of good palliative care, and more clearly identify what patients, carers and families want and need when faced with serious illness and end-of-life decisions.

Michelle was a carer for her father who lived with Parkinson's disease, dementia and prostate cancer, providing support and a voice for him and her mother. Michelle works as a registered nurse with experience in aged care, dementia care education and palliative care in regional Victoria. She also works as an Advocate for Elder Rights Advocacy. Michelle is a Guide for the Violet Initiative, volunteering to help guide and support people caring for a loved one with serious illness. Michelle is focused on improving care for people with serious illness and their carers to ensure they are empowered to understand their rights and express their needs.

In caring for her husband, Graham, with young onset Alzheimer’s Imelda learned how to be an advocate to ensure he received the best possible care and quality of life. Palliative care support enabled Imelda to honour her husband’s values and enjoy special moments in his last stage of life. Imelda is an experienced Dementia Advocate and partners with researchers nationally and internationally, with contribution to advisory groups such as the Australian Digital Health Agency. Realising that we only get one chance to walk a loved one through their end-of-life journey, Imelda is passionate about ensuring other carers are empowered by this knowledge and encouraged to advocate for the best possible palliative and end-of-life care.

Like many others in the community, Tristan was unaware of the scope and function of palliative care until both his parents were diagnosed with cancer. In providing care for his mother during her 10-months of illness, Tristan experienced the impact of a late introduction and involvement of palliative care support. In contrast, his father received responsive and supportive community, outpatient and inpatient palliative care over a long period. Bringing skills from his career in management, Tristan values working with others and desires to be a voice and contribute to the conversation advocating for quality and early involvement of palliative care in serious illness. He is passionate about educating carers and families on the benefits of palliative care.

John’s experience of palliative care began in 2016 when he cared for his wife who had pancreatic cancer. During this time, John’s knowledge of palliative care grew from what he describes as ‘woefully inadequate’, to a strong awareness of the benefits this care offers. He also observed that health professionals were seemingly reluctant to refer his wife. Since this time, John has become actively involved in serving on numerous health and palliative care committees and consumer groups with hospitals, government, university research teams and national peak bodies such as Palliative Care Australia and the Consumer Health Forum. John has a passion for enhancing public awareness and ensuring earlier access to palliative care for patients with serious illness.

John is interested in bringing his knowledge and experience as a carer and health consumer advocate, alongside his professional experience as a lawyer and management consultant to improve opportunities for access to and provision of palliative care for people with life limiting illness. John started to become an active health consumer representative in 2008 through his membership of Consumer Health Forum of Australia, Cochrane and the Health Issues Centre having been appointed to Victorian Public Healthcare Awards’ judging panel and the working group concerned of various hospitals, medical organisations and research projects. As a Chinese migrant, John hopes to be a much-needed voice for existing and emerging migrant communities as well as his own in building an understanding of and access to palliative care.

At age 43, Stacey was diagnosed with Stage 4 lung cancer when metastases were found throughout her body and brain. Stacey has been fortunate to experience inpatient and community palliative care support. Consequently, she is passionate about the early involvement of palliative care services; the experience of younger people accessing palliative care; and the need for long term episodic palliative care for younger people with life-limiting illnesses. Stacey is a former allied health professional and tobacco treatment specialist who has also worked as a trainer and contributed to qualitative and quantitative health care research projects. She volunteers as a patient advocate in the lung cancer and frailty space and has an interest in addressing stigma in health care.

Howard spent fifteen years as a carer of his late first wife who had a degenerative neurological condition. During that time, Howard learnt with various degrees of success how to navigate the Western Australian Health System. During this period, Carers WA were a major source of support. It was through one of their regular newsletters that Howard responded to a vacancy on the community advisory committee. That first appointment has led to many more over the succeeding years. Howard finds supporting research projects very rewarding.

Nell is 54 years old and was diagnosed with younger onset Alzheimer's disease in February 2020. Nell has extensive experience and expertise in the aged care and disability sectors before her recent retirement. She worked as a trainer and assessor for care workers and as a disability support specialist before her diagnosis. Nell is an active Dementia Australia advocate and has been interviewed by news media and podcasts about her diagnosis experience. Nell has also reviewed grant applications, been a guest speaker at a symposium for Centre for Research Excellence funded by NHMRC, and been involved in numerous UNSW projects including Advanced Care Planning for people living with dementia. Nell says she ‘lives in the moment and surrounds herself with good people’ and reminds us to, “ always be kind. . . because dementia is not”

Lorraine was a social worker for 30+ years, mainly in the community services sector in Melbourne. Lorraine has worked in Aged Care, Disability, Public Housing, Centre Against Assault, Carers Victoria, Local Government and as an Elder Abuse counsellor. On a personal level, Lorraine became the main support for her ageing parents. This role started in 1987, when Lorraine was 34 years of age and mid-way through her social work degree. Currently, Lorraine's partner has stage 4 cancer, and Lorraine is her main support. Lorraine and her partner are engaged with a local palliative care service. Lorraine believes the area of palliative care is important and is interested to be involved as a volunteer.

Benny is a playwright and Artistic Director of PETAWA INCORPORATED. He founded this non-profit community theatre group alongside like-minded people in 2014 and has since written, produced, and directed 6 original plays and various events for the community. He was awarded the WA Citizen of the Year 2023 (Metropolitan recipient) for his latest play - The Moon and The Bakunawa (A Dementia Carer Story). This was an autobiographical play about his full-time carer journey for his mother, who was diagnosed with vascular dementia. Benny has been a Dementia Advocate for over 10 years and is currently part of various Dementia awareness groups such as STEP-UP Research and was formerly with the Curtin Brain Research project amongst others.

Gai cared for both of her parents in the last months of their lives; one at home with input from a palliative care worker and the other in hospital. In the intervening 20 years, palliative care has changed for the better and Gai is keen to contribute to continual improvement in this area. More recently Gai has received services from a palliative care team when her cancer stopped responding to standard treatment and her health seriously deteriorated. She is now on a drug trial and is well enough to contribute to assisting Voices for Palliative Care continue their valuable work promoting the voices of palliative care recipients and their carers.

As a carer for her grandmother through bowel cancer diagnosis, treatment, and palliative care, Debbie hopes her personal experiences—both good and bad—can help shape more inclusive and better care for all patients and their families. She has been involved with Peter Mac for 10 years, currently serving on the Community Advisory Committee and has contributed to several Executive Committees and working groups, with a focus on strengthening the patient and carer experience and improving cancer education and resources. In the UK, Debbie spent over four years volunteering with Marie Curie Cancer Care, contributing to digital transformation initiatives and fundraising efforts.

Andrea is a passionate advocate for compassionate care, choice and agency at the end of life. She is a social scientist with over 25 years’ experience working in policy research and evidence-based advocacy, with a focus on community engagement and empowerment. She has worked in Australia and across the Asia-Pacific, learning from different cultures, customs and worldviews. Andrea had the privilege of supporting her father at the end of his life to realise his preference to die at home and access Voluntary Assisted Dying. She saw firsthand the value of palliative care in supporting the needs and values of those approaching the end of life. Andrea is a palliative care volunteer with Banksia Community Palliative Care. She is also a trained End-of-Life Doula, working to increase death literacy in the community and providing non-medical support to people approaching the end of life, as well as their families.

Gay came to learn of palliative care services through her husband Andrew’s cancer journey. Although their connection with these services was brief, it had significant impact. Now, Gay hopes to help raise awareness about this multidisciplinary care specialisation, drawing from her family’s experience and her career in consulting and management.

Sanna is the Founder/President of Inspired Network Support Services, a not-forprofit organisation currently in the process of formal registration. Alongside this, Sanna has co-founded a Dementia Action Group, working to bring dementia awareness and support to carers and families by linking them to essential services and creating shared platforms. Sanna’s advocacy is rooted in lived experience: Sanna cared for her late mother with dementia for over 12 years, alongside her siblings. That journey opened Sanna’s eyes, not only to the challenges of longterm caring, but also to the silence and stigma that can surround palliative and end-of-life care in her community. In many culturally and linguistically diverse families, including Sanna’s own Muslim and Arabic-speaking community, seeking outside support is often seen as shameful or unnecessary. This leaves carers isolated and patients without the compassionate care they deserve. Through Sanna’s work and Sanna’a story, she has come to believe strongly in changing this narrative — showing families that palliative care can be an empowering, dignified, and culturally respectful journey when done well.

Jess is married to Paul and has 4 children, stepson Lachie 28, Gretel 21, Billy 20 and Henry who passed away at the age of 6 in 2013 at the Royal Children’s Hospital. Henry had a life limiting illness and was supported by Palliative Care at RCH for 3 and a half years, they were the Captains of “Team Henry” . Jess also supported both her mum and dad on their palliative journey. Jess has had many opportunities to share Henry and her family’s journey with Health Professionals and Educators through speaking engagements, media, podcast, modules and written material. What Jess hopes for in sharing is that every child can have a “Henry Holmes ending” . Henry was supported to die beautifully and her family was guided on this journey by Palliative Care at RCH. “Palliative Care isn’t just about end of life, it’s about quality of life in the now, they made sure Henry had the best quality of life. Every child and family deserve this” . Jess works at Goulburn Valley Hospice in Shepparton as a Carer Wellbeing Support Coordinator and Biography Trainer. She is a casual disability support worker. She is a Mentor for the Ladybird Care Foundation, supporting two mums on their bereavement journey.

Jennifer Philip is the Chair of Palliative Medicine, University of Melbourne, St Vincent’s Hospital and in collaboration with the Victorian Comprehensive Cancer Centre. Jennifer is a palliative care physician whose research focuses on improving access and equity to high quality care for people with advanced illness and improving the evidence base underpinning symptom management.

Anna is a NHMRC Emerging Leader and Senior Research Fellow for Palliative Nexus in the Department of Medicine at St Vincent’s hospital, and the University of Melbourne. Anna’s research explores and promotes engagement with timely access to palliative care for people with serious illness, designing new health service models, and evolving community understandings and advocacy for improved care.

Peter is the Director of the Centre for Palliative Care c/o St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia. He is a Professor (Honorary) at The University of Melbourne and Vrije University Brussels, Belgium. The main focus of Peter’s work relates to evidence based strategies to improve the wellbeing of people living with serious illness and their family carers.

Mollie Wilson is PhD candidate and early career researcher, investigating the various ways that people adapt to the uncertainties of serious illness. Mollie is a member of the Palliative Nexus research team, working across St Vincent’s Hospital, and The University of Melbourne. Mollie oversees and coordinates Voices for Palliative Care.