26 March 2019
Last week I published an article about a vigilante group of aged care advocates who bully and harass aged care providers, staff and other aged care advocates. Stewart Johnston responded to this article with his personal experience of being targeted by this group. He demonstrated forgiveness and compassion for those who had abused him.
I have known about this vigilante group for some time. My impression is members of this group are angry, irrational and mostly illiterate. The few times I visited the leader of this group’s Facebook page, I was shocked by her venom towards providers, peak bodies and government. My response has been to ignore this group.
I know there are some wonderful aged care homes because my parents lived in one. I also know some providers of in-home care deliver high standards of care and support. Yesterday I met the leadership team of one of these providers.
I do not agree with the leader of this vigilante group that aged care is “like the holocaust.” Instead, my position is we must get the unscrupulous providers out of the sector so we only have providers who deliver high standards of care.
I have been a voluntary aged care advocate for several years. Unlike this vigilante group, my advocacy has focused on finding solutions, not screaming abuse on Facebook and Twitter.
I began analysing systemic issues in the aged care sector after my mother and father moved into an aged care home in 2010. They were both very happy living in the aged care home. Most staff treated them with kindness, respect and love. They loved the food, the activities and they made many new friends, both residents and staff. After Dad’s death in January 2012, I stopped work so I could visit Mum most days for about 3 years until her death in September 2015.
With my background as a public health researcher and a registered nurse who worked in intensive care units, I was able to analyse the aged care sector through a critical and clinical lens. Rather than writing Facebook posts and Tweeting, I began writing regular letters to the editor of The Age. I wrote letters about staffing, accreditation, aged care funding instrument, complaints scheme, living wills and polypharmacy in older people.
After Mum died, I was asked to write an Opinion Piece. The Aged Care Gravy Train catapulted me into aged care advocacy. Soon afterwards, I began a voluntary advocacy group Aged Care Matters. In addition to writing numerous opinion pieces and submissions to inquiries/Royal Commission, I met with government, peak bodies and providers. I have also undertaken a research project on aged care homes and in-home care.
Shouting abuse and sharing memes on a Facebook or Twitter does nothing to help older people. It may make the poster/tweeter feel powerful, but it is just loud noise. In my view, the aged care sector will improve when residents, relatives, staff, providers, bureaucrats and politicians collaborate to ensure older people in aged care homes and in-home care have the best possible quality of life. Engaging respectfully with key stakeholders is an opportunity to learn about different perspectives.
Over the past few years, I have received numerous phone calls from residents and relatives wanting advice and help. Yesterday, a woman contacted me. She was extremely distressed because the aged care home had resuscitated her 94-year-old mother who had a Do Not Resuscitate order in her Advance Care Plan.
It was a heart-breaking story. Rather than die peacefully after breakfast, the family watched their mother and grandmother die a slow and seemingly painful death in a hospital palliative care unit. With better systems in place, this would not have happened. With my focus on solutions, perhaps all residents in an aged care home with a Not For Resuscitation order should wear an identifying bracelet.
It has been difficult for me to step aside from aged care advocacy when there is still so much that needs to be done. However, 20-30 hours a week of voluntary work was not sustainable.
Recently, I was a victim of Internet abuse by a member of the Facebook group Actioning Change for Aged Care. This is the same group who abused Stewart Johnston, Maria Berry and Charli Maree Darragh Matterson. A member of this group said: “People are sceptical and think you are captured because you have lunches with peak bodies.”
I am not captured by anyone. I have meetings with CEOs of peak bodies because I know they are focused on finding ways to deliver the best care to older people. Although I often disagree with peak bodies, we listen respectfully to each other’s opinion. Indeed, I have much more respect for the CEOs of LASA, ACSA and Aged Care Guild than I do for those who shout abuse on Facebook and Twitter.
Yesterday, I was asked if I felt like “doing some pro-bono time for Elder Rights Advocacy”. This financial year Elders Rights Advocacy received over $1.3 million from the National Aged Care Advocacy Program (NACAP) grant. It seems that it may take some time to change people’s expectations. I am no longer a volunteer!