Improving Transparency In The Aged Care Sector Will Benefit Everyone

10 July 2019

Last week, I was invited to comment on the requirement in the new Aged Care Quality Standards for open disclosure. I suggested all aged care homes and home care providers should be required to report adverse incidents not only to the older person and their family but also on their websites.

I am pleased both Ian Yates (CEO, COTA) and Darren Mathewson (Acting CEO of ACSA) have contested this idea for improving transparency. I always welcome debate. A public debate about transparency in the aged care sector is long overdue.

My research on residential aged care and in-home care indicates the public want more transparency in the aged care sector. Although many people, myself included, believe the care of frail older people istoo important to be left to the whims of the free market, both COTA and ACSA promote lighter regulation and a consumer driven and market based system, as outlined in the Aged Care Roadmap.

In a free market, so-called “aged care consumers” require access to information to inform their choice of product. For example, to make an informed decision when choosing an aged care home, “aged care consumers” require information about its standards of care. However, aged care homes are not even required to disclose their rosters/staffing levels. How can people make informed decisions about an aged care home’s standards of care when they do not have access to this vital piece of information?

In addition to staffing levels, I have tried unsuccessfully to get data on adverse incidents in aged care homes such as the incidence of pressure injuries, dehydration, malnutrition, medication errors and falls. This information is needed not only to help people make informed decisions when choosing an aged care home but also for an evidence-based discussion about standards of care.

The most common reason providers give for not sharing clinical indicators with the public are: (1) Privacy and (2) Commercial-in-confidence. It is not surprising, therefore, that Ian Yates opposes my suggestion for all adverse incidents to be reported on a providers’ website because it “would raise privacy and other issues”.

In my view, claims about breaching privacy are a red herring. I will use 2 examples to illustrate this.

Example 1

When my mother had a fall in an aged care home that contributed to her premature death, the manager informed me and apologised (i.e. open disclosure). I am not suggesting the provider should post on the company’s website “Joan Russell had a preventable fall that contributed to her premature death”. Of course that would be a breach of my mother’s privacy.

I am instead suggesting the company be required to publish information about the adverse event. This would include information such as: a fall occurred in the lounge room, the date of the fall and how/why it occurred. The web site should also contain information about what the aged care home has done to prevent a similar adverse event occurring to other residents.

Example 2

A 94-year-old woman was resuscitated in an aged care home despite having an advanced care plan stipulating ‘Do Not Resuscitate’. The aged care home did not practice open disclosure. The daughter had to fight to find out why/how/who resuscitated her mother.

In my view, the aged care home should be required to share information about this adverse event with the public without breaching the resident’s privacy. The public need to know the policies and procedures have been introduced to ensure other residents are not resuscitated against their wishes.

Several years ago, I asked Ken Wyatt to improve transparency in the aged care sector. I suggested public access to all reports produced by the Australian Aged Care Quality Agency by linking them to the ‘My Aged Care’ website.

Ken Wyatt took my suggestion to the Aged Care Sector Committee. The minutes of the meeting (obtained under Freedom of Information) show that Ian Yates opposed this suggestion for increased transparency. The committee decided the information in these reports was “too technical” for the public to understand. In my view, this was patronizing.

In the 1980s, I was part of a group of registered nurses in an intensive care unit who advocated for open disclosure policies. These open disclosure policies are now legislated in all public health services. I would like to see similar legislation in the aged care sector. I also welcome public discussion about this idea.


On resuscitation and a good death in aged care

Recently, a woman contacted me because a 94-year-old woman was resuscitated in an aged care home despite having an advance care plan stipulating Do Not Resuscitate. Rather than die peacefully after breakfast, this woman had a slow and painful death in a hospital palliative care unit.

Aged Care Insite

Aged Care Matters: Solutions Through Evidence And Dialogue

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!


Bullying and abuse among aged care advocates must stop

19 March 2019

There are a large number of voluntary aged care advocacy groups. Aged Care Crisis, Elder Care Watch, Aged Care Matters, Stop Elder Abuse, Angels for the Elderly, to name a few. Representatives of these voluntary groups spend hours upon hours talking with residents of aged care homes, recipients of in-home care, family members and staff.

The emergence of these voluntary advocacy groups raises an important question about the role of ‘consumer’ organisations funded by the federal government. Why are people seeking help from volunteers rather than COTA, National Seniors and OPAN?

The most common complaint about OPAN in Victoria is ‘the answering machine’. This financial year Elders Rights Advocacy received over $1.3 million from the National Aged Care Advocacy Program (NACAP) grant. Yet, when people phone Elders Rights Advocacy for advice/help, people say they are often greeted with an answering machine. Not surprisingly, these people go elsewhere for help.

Most voluntary aged care advocacy groups are extremely well intentioned. However, in recent years, some vigilante type aged care advocacy groups have emerged. Unlike Aged Care Crisis that rigorously contests claims made by governments and providers, these vigilante groups viciously attack individuals.

One of these vigilante groups operates under the name of Actioning Change for Aged Care. Some members of this group use Facebook in an attempt to destroy the reputations of people working in the aged care sector. In the beginning, they focused their attention primarily on providers. TriCare in Bundaberg was their first target. Next was Opal.

The most recent attack is focused on an aged care home in a small town in Queensland. Over the past 18 months, this vigilante group has conducted a relentless and vicious campaign against administration, staff and volunteers of Millmerran aged care home. With the use of out-dated records, they have raised multiple vexatious complaints with the Aged Care Complaints Commissioner. They have also posted hateful remarks about aged care workers and their family and made numerous threats. The reasons for this ongoing attack can be attributed to personal grudges and the fact the community dared to contradict their claims and fight back.

This vigilante group bases its attacks on anecdotes not evidence. Members of this group claim naming and shaming is in the “public’s interest”, irrespective of whether there is any substance to their attacks. Fortunately journalism’s code of ethics requires an independent investigation of claims of neglect in an aged care home before such claims are reported.

This document  demonstrates the ongoing atrocious, vulgar, bullying and harassing behaviour from those who claim to be aged care advocates. As you will see, their abuse is not limited to individual aged care providers. They also attack individual aged care workers and even volunteers.

This vigilante group also attack other aged care advocates. Stewart Johnston (Oakden whistle blower), Charli Maree Darragh Matterson (Angels for the Elderly), Maria Berry and me (Aged Care Matters) have all been victims of online abuse. There are others who prefer not to be named.

The Internet has enabled a small group of women to disrupt many people’s lives. Take Stewart Johnston for example. Since his mother was abused in Oakden, Stewart has worked tirelessly to help reform the aged care system. Yet members of this vigilante group attacked and ridiculed him.

I have also had the misfortune to read some abusive Facebook posts directed at Charli Maree Darragh Matterson. After Charli’s mother was murdered in an aged care home, these sadists chose to bully and intimidate her by posting repugnant images and hateful comments on Facebook. This ongoing abuse made Charli feel suicidal.

Unfortunately, Facebook turns a blind eye to trolls and bullies whose relentless abuse has caused suicides, depression and other mental health issues. By not adequately controlling trolling, Facebook is condoning sadists’ despicable behaviour.

I am the most recent victim of Internet abuse by a member of the Facebook group Actioning Change for Aged Care. Rather than call this person a troll, I call her “an abuser” because the abuse was sent via private messages.

Soon after I left Aged Care Matters’ Facebook group, the Internet abuse began: “Fancy telling people in Aged Care Matters Facebook group that you’re broke! You own your house and a beach shack. Yep, you’re struggling! That’s so offensive to people who are broke.”

The conventional wisdom of the Internet is to ignore abusive messages. However, I chose to engage with humour. “I can’t eat my house”. The abuser then replied: “Sell a house”.

The next message was directed at my approach to aged care advocacy: “People are sceptical and think you are captured because you have lunches with providers and peak bodies. You think [they] are decent people.“

The abuser continued: “Like every other advocate, your advocacy has not been affective.  Meetings with ministers, aged care providers and peak body groups have amounted to pretty much nothing. It was 4 Corners who where (sic) instrumental in forcing a Royal Commission, not you. No advocates are taken seriously. And as much as you talk and write, nothing has changed. So perhaps try a different tact (sic).”

I engaged: “Do you suggest I adopt your tactic and spew meaningless insulting Facebook posts?”

The abuser would not be silenced: “Not in a million years would I have lunch with people who have knowingly protected organisations that have neglected and abused the elderly for years. When are you having lunch with George Pell?”

I could not resist replying: “George Pell is a convicted paedophile. [The people you refer to] are not paedophiles. They are simply people with whom you disagree.”

I had clearly stated that people who work in industry are people with whom these abusers disagreed. Yet the abuser quickly shot back an absurd reply: “Misleading of you to suggest I think your mates [in industry] are paedophiles.”

The next message was equally nonsensical: “Pell knew about the abuse in the church and did nothing about it. Same as your mates have known about the abuse in aged care for years and have done what?”

At this point, I stop engaging. Instead I took a screen shot of the private messages and shared them on social media.

Then the threats began:  “You’re a complete and utter moll. Take that down at once or I will truly expose you for the person you are… I will be filing for an intervention order on Monday.”

I continued to use humour: “Monday is a public holiday. Best to do it on Tuesday.”

Calling me a moll and making threats (e.g. to call the police, apply for an intervention order or sue for defamation) are tactics frequently used by this group. These threats have no substance. A month later, I am still waiting for the intervention order!

Most vicious messages are rants that can easily be ignored. However, some posts are deadly serious. The registered nurse in the group posted advice about how to commit murder undetected.

The women in this small cabal claim to be whistle-blowers and aged care advocates. However, their Facebook posts show they are more interested in conducting campaigns of abuse than aged care reform. It is ironic that members of this group post memes denouncing those who bully. It is definitely a case of the pot calling the kettle black.

These women call for respect of older people in aged care homes while they demonstrate disrespect towards anyone who disagrees with them.  For example, a man who volunteers by taking Millmerran’s aged care residents on bus excursions questioned the claims made by these vigilantes. He then became the subject of their abuse. They ridiculed and bullied him, describing him as the “Old Bus Driver”.

A recent petition collected over 300,000 signatures from people who are concerned about standards of care in aged care homes. Under normal circumstances, this petition would cause the government to sit up and take notice. However, its association with a toxic, abusive group of women seriously undermines the petition’s credibility.

It is clearly not only unscrupulous providers who need to leave the aged care sector. Immoral people who abuse and threaten on the Internet have no place in aged care advocacy.