Raising the voice of the silent consumer
28 Mar 2022
Kathryn Hourigan, reflects on her first 6 months as the Consumer Co-Lead for the Statewide Palliative Care Clinical Network.
The Commission on Excellence and Innovation in Health (CEIH) has recently established Co-Lead roles for the Statewide Palliative Care Clinical Network. I have been appointed as the Co-Lead Consumer and Dr Peter Allcroft as the Co-Lead Clinical. Not only is the Co-Leadership model very innovative but to provide a consumer with equal voice in a leadership role is a first within the CEIH, known for championing new ways of thinking and enhancing the communication between caregiver and care receiver, a sacred space of interaction.
We share responsibilities as Co-Leads and although our skills are different, we do through collaboration search out multiple ideas and explore solutions for the betterment of palliative care for those people with a life limiting illness — little children, teens, young adults, adults or the aged. Palliative care is not only about living well and dying well with a life limiting illness but the provision of grief and bereavement services to loved ones after the death.
Of course, living and dying well differs for everyone based on the illness trajectory, illness limitations, culture, beliefs and values systems, hopes, aspirations, support networks and service availability across South Australia. An important role as Consumer Co-Lead is to raise awareness and to advocate for peoples voices to be respectfully heard so their needs are met according to their wishes.
Since commencing the Co-Lead roles both Peter and I have sought to build thoughtful relationships with consumers and staff within SA Health, with all those who provide palliative care services. Be they general practitioners, professional bodies, research institutions, clinical leads, nursing leads, aged care and/or palliative care providers both for metropolitan and rural communities.
A particular focus has been identifying ways in which the patient and carer experience of palliative care services can be assessed that will help the care givers understand what is working well or where improvements could be made. This is a new and innovative area and one that is being advocated for at a State and National level.
Another important area is a long-term sustainable workforce to meet the increasing need for palliative care in an aging population and a workforce that feels valued and whose wellbeing is at the forefront of health care planning. The needs of the care receivers and the care givers require equal consideration so that the sacred space between them is nurtured and maintained.
Peter and I, as Co-Leads will continue to advocate for and promote the best palliative care principles through collaboration, focusing on respect, compassion and to enshrine equity of access for all who need palliative care.
To read about more about the Network and its projects, see Statewide Palliative Care Clinical Network.