I 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.
I firmly believe that the consumer’s experience and the presence of kindness and compassion greatly influence outcomes of care. Promoting health literacy will empower people and increase their ability to access and understand information. Priority needs to be given to fostering connection between clinicians and consumers, to ensure shared decision making occurs based upon individual priorities and preferences.
I hold a Master’s Degree in Bioethics and have a strong interest in the ethical issues that arise when ensuring equity and access to palliative care and voluntary assisted dying. More importantly I have had the privilege of caring for many people at the end of their lives and have been deeply influenced by the courage, dignity and grace people display at the end of their lives. I have had direct personal experience as a carer for a number of family members who have died from cancer, end stage organ disease and neurological disease. This has made me even more aware of the vulnerability and powerlessness of both consumers and carers when life is ending. I worked professionally as a palliative care nurse consultant for 27 years and I was directly involved in service and policy development for the service I worked in and at a state level. I have provided input into the development of national standards and strategies for palliative care.