National Register of Palliative Care Consumers and Carers
National Register of Palliative Care Consumers and Carers
Wednesday, October 10, 2018
Palliative Care Australia has established a National Register of Palliative Care Consumers and Carers to give a voice to those living with a life-limiting illness, people who are receiving palliative care, their family, carers and the palliative care volunteers who support them. The information below outlines more about the National Register, whether you are an interested individual seeking to be involved or an organisation seeking a representative.
Many health organisations seek interested people (consumers and carers) who have direct experience in palliative care to improve their service delivery. By establishing the National Register we endeavour to build a collective body of knowledge and a way to share these experiences to inform, improve and guide the development of Australia’s palliative care policies and services across settings and sectors. We want personal experiences to matter to improve services for any one who may require palliative care.
In palliative care policy contexts consumer and carer involvement has been shown to:
- Demystify palliative care
- Increase public awareness of, and support for, palliative care services
- Assist palliative care services to better understand and respond to the needs of consumers, especially under-served populations.
What is the National Register?
The National Register is a group of independent people with a lived experience of palliative care from across Australia. Our representatives have a varied range of experiences with palliative care and are able to use their lived experience and communication skills to share their stories and provide input into public policy and service delivery related to palliative care in Australia.
The National Register is designed to foster opportunities for consumer and carer engagement at a national or jurisdictional level in a supported environment. PCA is dedicated to supporting members of the National Register by best practice and has adopted principles of quality consumer and carer participation based on best practice and recommendations in global literature on the subject.
If you are an organisation looking for a representative, you can meet our current carer and consumer representatives. This link provides you a biography of representatives, their skills and interest in end-of-life care. Meet our carer and consumer representatives below.
The Engaging a Consumer Representative Fact Sheet can help you find out more about engaging a consumer, carer or volunteer working in palliative care from the PCA's National Register. The Fact Sheet outlines how representatives can contribute to a projects, PCA's role, payment and how to proceed to engage a representative.
For more information on the above, contact Palliative Care Australia on 02 6232 0700.
Read more here if you are interested in becoming a consumer and carer representative.
National Register of Palliative Care Consumers and Carers
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Christine Hofmeyer
Representative
Christine Hofmeyer
Representative
Read moreI see my role as a carer and consumer representative as an opportunity to act as an advocate for consumers and carers, to promote person-centred care and programmes to improve health literacy in death and dying. I believe it is essential to ensure consumers points of view and experiences are heard and integrated into policy development and service and quality improvements.
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Debra Letica
Representative
Debra Letica
Representative
Read moreDebra is passionate about reducing health disparities, especially for vulnerable people living with disabilities; their carer’s and support workers.
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Frances Logan
Representative
Frances Logan
Representative
Read moreMy volunteer roles, (experience as a volunteer and team leader in the Community team) with Hospice Volunteers South (Tasmania) and with Lifeline Tasmania bring me into connection with people living with life threatening illness, their carers and those bereaved by the death of people of significance in their lives. I am a member of Palliative Care Tasmania.
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Harpreet Kalsi-Smith
Representative
Harpreet Kalsi-Smith
Representative
Read moreMy passion to advocate and work in end of life care commenced after supporting my family care for my mother during her final months. My own experience in losing a baby and supporting those around me who have recently lost loved ones from cancer, dementia and old age has further driven me to work for better care for all approaching end of life.
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John Clements
Representative
John Clements
Representative
Read moreI have two main aims within the area of palliative care: The first is to do what I can to inform the general public as to what it actually is and the potential benefits it offers and the second is to strive to get palliative care more involved at an earlier stage in patients’ trajectories than is currently the case.
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Nicola Champion
Representative
Nicola Champion
Representative
Read moreI am a registered nurse with twenty years’ experience working in a rural, regional community cancer care and palliative service. I also have personal experience of caring for my terminally ill father as a single mum at home until his death.
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Rob Hill
Representative
Rob Hill
Representative
Read moreCoping with the declining health and eventual death of your parents is an unfortunate reality of life for most people. However, being in my 20s when it occurred was never something I expected.
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Rosemary Dillon
Representative
Rosemary Dillon
Representative
Read moreRosemary is a registered nurse with a clinical background in neurology and neurosurgery, aged care, rehabilitation and more recently, patient experience and consumer engagement. On a personal level, in recent years Rosemary has cared for several people in her immediate family at the end of their lives.
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Simon Menelaws
Representative
Simon Menelaws
Representative
Read moreMy first experiences with life-limiting disease and the symptoms of significant illness were as a doctor. From early on in my career I was acutely aware of the complexities and paradox of how my profession approached the experience that binds us all as humans: death.
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Simon Waring
Representative
Simon Waring
Representative
Read moreMy experience of palliative care extends to both adult and paediatric oncology, as a full-time carer to one of my young sons and also my wife. Diagnosed with neuroblastoma at fifteen months, my son Marmaduke died three years later, just five weeks after my wife succumbed to breast cancer.
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Natasha Welsh
Representative
Natasha Welsh
Representative
Read moreNatasha is the CEO of Derek's Place. She is a mother to Cristian, who was just four-years-old when her husband Derek, passed away from Glioblastoma Multiforme (GBM) in August 2019 after a 23-month battle. Derek was one month short of his 36th birthday.
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Jodie Adams
Representative
Jodie Adams
Representative
Read moreMy journey alongside my daughter under paediatric palliative care was only five months, but I was in that space for a number of years with my daughter having a rare and complex life limiting condition from when she was 12 months. Cosette was 5 years old when she passed away and spent over half her life in the Royal Children’s Hospital. I experienced exhaustion in providing ongoing 24-hour care on my own attending to my daughter’s high medical needs. Respite is imperative for carers and families need to be provided adequate support to prevent carer burnout.
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Shannon Calvert
Representative
Shannon Calvert
Representative
Read moreShannon Calvert is a passionate advocate for consumers, carers and families, collaborating with organisations by facilitating person-centred, compassionate - oriented and integrated health care through systemic advocacy, service design, delivery, and evaluation. She identifies as a lived experience professional, having experienced a severe and enduring illness for many years. In 2014–2015 she cared for her mother who was receiving palliative care until her end of life.
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Jacinta Smith
Representative
Jacinta Smith
Representative
Read moreIn 2019 I was diagnosed with Acute Myeloid Leukaemia. My journey took me through induction and consolidation rounds of chemotherapy as well as a Bone Marrow Transplant. During this treatment period I spent 22 days on life support in the Intensive Care Unit due to total organ failure and consequently, spent an extended time in a rehabilitation unit due to my deconditioned state.
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Julie Delvecchio
Representative
Julie Delvecchio
Representative
Read moreJulie’s passion for palliative care stems not only from their professional experience but also from personal encounters. Over a decade ago, she spent a brief period as a palliative care volunteer and supported her mother during her 6.5-week stay in a hospice in 2023. This deeply meaningful experience has given Julie firsthand insights into end-of-life care's challenges and transformative power.
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Jodie Clarkson
Representative
Jodie Clarkson
Representative
Read moreJodie Clarkson is a palliative care outpatient in Mparntwe (Alice Springs). She has been living with brain cancer since 2017 and has undergone neurosurgery in South Australia and New South Wales as well as chemotherapy in the Northern Territory. Jodie holds a Bachelor of Applied Science and a Master of Education LOTE (Languages Other than English) and EADL (English as an Additional Dialect or Language). She worked and now volunteers with the Aboriginal Interpreter Service training professionals in legal, health and human services.
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Annie Dullow
Representative
Annie Dullow
Representative
Read moreMy personal experience of palliative care was with my mum who was provided with excellent non-specialist palliative care in an aged care setting. As a family we felt supported, listened to and encouraged to be with Mum for as long as we wished and assist with her end of life care.
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Genus Passi
Representative
Genus Passi
Representative
Read moreGenus Passi, born and raised in Townsville, is a descendant from the Eastern Torres Strait Islands with direct family lineage to Lifou Island in New Caledonia and West Papua (Province).
