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“Look after the house so the spirit can enjoy life”: stories of hope and harm from the Aged Care Royal Commission

Harrowing descriptions of individual experiences in aged care – by residents, families, and aged care workers – were at the heart of the final submissions from senior counsel assisting the Royal Commission into Aged Care Quality and Safety last week.

Among them were the “heartbreaking account” of a young man forced by a football assault to live in aged care, who described how he cried the first night he was there, thinking: I’m 22, I’ve got maybe 65 years left in my life and I’m forced to live here for the rest of it with no ability of ever getting out.”

A union representative for aged care workers talked about them feeling like they were “‘on the bottom of the Titanic ship”, while an older resident of an aged care facility declared: “This is not a home, it’s an institution, it’s where you live.”

Not all were stories of pain or distress, with a number showcasing the impact and importance of good care and comfort, but all pointed to the need for urgent, comprehensive system change. See the cases highlighted from the final submission in full below.

Informed by those stories and many other submissions, the senior counsel, QCs  Peter Gray and Peter Rozen, have called for an independent Australian Aged Care Commission to be established, along with new legislation based on human rights and mandated staffing ratios, among 124 recommendations they put to the Royal Commission last week as part of their 475 page final submission.

As media outlets have reported, there is no guarantee the recommendations will be taken up by the Royal Commissioners in their final report, particularly around the need for a new independent body.

Anyone interested can respond to the final submissions and other matters arising at the hearing, but must do so by 12 November 2020. The Royal Commission’s final report is expected to be handed down in February 2021.

See at the bottom of the post too for responses from key groups to the final submissions.


“Once in a lifetime chance for change”

Gray and Rozen opened their final submission by quoting the late Commissioner Richard Tracey that:

The Royal Commission is a once-in-a-lifetime opportunity to come together as a nation to consider how we can create a better system of care for elderly Australians that better aligns with the expectations of the Australian people.

The hallmark of a civilised society is how it treats its most vulnerable people.”

Saying this has been “most in-depth and thorough examination of Australian’s aged care system that has ever been undertaken”, they detailed an array of statistics about the breadth and depth of the Royal Commission’s inquiry including:

  • 10,203 submissions received from people receiving aged care services, family members, aged care workers, approved providers, aged care and health sector representative bodies, government organisations and others.
  • Community forums held in 12 locations nationwide, attended by 2,416 people and 228 speakers.
  • Public hearings in all eight capital cities and four regional centres being Broome, Cairns, Mudgee and Mildura.
  • In total 97 days of hearings at which 641 witnesses gave evidence, including 113 direct experience witnesses: people living in residential aged care, people receiving home care and their families.
  • 13 roundtables on the aged care workforce and aged care in culturally and linguistically diverse communities, lesbian, gay, bisexual, transgender and intersex communities, and Aboriginal and Torres Strait Islander communities.
  • 12 research papers on topics including community attitudes to ageing and aged care, and international and national quality and safety indicators for aged care, 8 background papers on subjects ranging from carers of older Australians to restrictive practices in residential aged care, and 2 consultation papers on aged care program redesign and financing aged care.

But, critically and in moving detail, they observed that while these statistics are impressive, “they are so much more than a collection of numbers”.

Saluting the courage of witnesses for sharing the most intimate details of their lives to inform this inquiry, and noting how difficult it was to hear many of the experiences, they highlighted individual stories from residents, families and aged care workers that had informed their submission and recommendations. They said:

Many of these accounts were difficult to listen to; all were very valuable. We are grateful to these many brave people.”

Stories of pain, shame, anger and hope

  • Ms Shannon Ruddock who gave evidence in Perth explained the personal trauma she suffered in wanting her late father to pass away in hospital rather than return to the aged care home where the palliative care was sub-standard. Drawing on her experience of the staffing levels at the hospital and contrasting them to the levels at the home, Ms Ruddock advocated for a rigorous form of accreditation before an aged care home could provide palliative care.
  • Mrs Johanna Aalberts-Henderson who spoke of her ‘ice cold rage’ at the terrible state of a leg wound her late mother suffered at a residential aged care facility in suburban Melbourne. A nurse herself, Ms Aalberts-Henderson said she could have reached into the wound and touched her mother’s tibia. Subsequent investigations found that the dressings had been changed by personal care workers and not nurses.Rosters in evidence showed that there were no registered nurses working on the afternoon or evening shifts for 60 residents most of whom had high clinical needs. A consultant engaged by the provider concluded that registered nursing levels were so low that residents could expect to receive, on average, only seven minutes of nursing care per day.
  • Mr James Nutt who entered residential aged care when he was 22 years old after he was assaulted at a local footy match which left him with an acquired brain injury and paralysed from the chest down. Mr Nutt gave a heartbreaking account of his time living in a residential aged care facility: on his first evening, Mr Nutt described going back into his room after dinner, held his head in his hands and cried, as he thought to himself ‘I’m 22, I’ve got maybe 65 years left in my life and I’m forced to live here for the rest of it with no ability of ever getting out.’
  • Ms Kirby Littley who was in her late 20s when she had surgeries for a brain tumour. As a result of this, Ms Littley had multiple strokes and was severely disabled. Ms Littley and her parents told the Royal Commission that residential aged care was presented as the only option for her. She told the Royal Commission that she felt as though nobody wanted her.
  • Mrs Rosemary Cameron’s husband was in his early 60s when he was diagnosed with Lewy Body Dementia. Based in the Macedon Ranges in Victoria, her experience of caring for her husband left Mrs Cameron completely exhausted. She described feeling rejected, as though she was left to fend for herself in caring for her husband.
  • Ms Veda Menaghetti was 61 when she was diagnosed with a rare variant of young onset frontotemporal dementia. Ms Lynda Henderson gave evidence in the second Adelaide hearing of the immeasurable value of the grassroots support and information after Veda was diagnosed. Through their shared experience with Veda’s dementia, they realised that most people are horrified when they receive a dementia diagnosis. With the support of their local council, university and Dementia Australia, a pilot program was developed which Ms Henderson helped to launch. This program focuses not just on being dementia friendly, but also dementia inclusive.
  • Ms Madeline Jadai, an Aboriginal Mangala woman, shared her story of caring for her sister, aged 62, in the remote Aboriginal Community of Bidyadaga. Ms Jadai’s sister has dementia and receives aged care services. Ms Jadai spoke of the value of the Bidyandanga Home and Community Care centre.
  • Mr Peter Harris gave evidence in Mudgee, in November 2019. Mr Harris, cared for his wife at home for five years. He described his experience as a carer as being like a ‘frog on the cooktop being boiled in cold water’, he knew things were changing for Beth, but they were slow and he was coping. Mr Harris’ experience of caring was like so many of those who have given evidence. Living in the country, Mr Harris explained how important the Multi-Purpose Service was for him and his wife Beth.
  • Mr George Aklwhose (whose) late father reverted to his first language, Arabic, as his dementia worsened. Mr Akl reminded us of the importance of an aged care system that respects and is responsive to cultural and linguistic diversity.
  • Ms Sarah Holland-Batt detailed her experience of her father in residential aged care. She told the Royal Commission that she observed neglectful care of her father who has since passed away. She became concerned that her father was being abused by staff at the residential care facility. Ms Holland-Batt raised this with the Aged Care Complaints Commissioner. But was dissatisfied with its response.
  • Ms Debra Barnes also gave evidence in the Brisbane hearing. Ms Barnes described her experience of her mother in residential aged care. She also described being disappointed in the complaints process. Ms Barnes could not understand how her complaint could be resolved without any acknowledgement or accountability of what actually happened to her mother.

Senior counsel said that over the course of the Royal Commission’s public hearings many aged care workers, including registered nurses, and personal care workers who work in home and community care and in residential aged care facilities, have given evidence.

They said:

“Some of these workers also work in the disability sector. All of these witnesses spoke with passion and commitment for the work they do and for the older people for whom they care.

“Many explained that they are aware that they are the only point of contact the older person has with the outside world on any given day. However, in equal measure, they spoke of the lack of value that is placed on their work. Of always being rushed in their work, and how attending to one resident’s needs would mean not being able to attend to the needs of other residents.

“They described how there is simply not enough staff or time available to support the needs of the residents. Many explained that they would regularly stay back on their own time to meet the needs of people receiving aged care services. Most spoke of the need for improved conditions and training and increased remuneration and respect.”

Those stories included:

  • Ms Kathryn Nobes who gave evidence in the first Sydney hearing that the working conditions of care workers has a serious impact on the quality of care that personal care workers are able to provide. Ms Nobes described how she suffered from Post-Traumatic Stress Disorder after an incident in the dementia unit at the facility where she worked, which involved an assault by a resident that left another resident dead. Ms Nobes spoke with grace of the challenges of caring for those with dementia and that staff working with dementia residents needed more training.
  • In the recent COVID-19 hearing, Ms Diana Asmar, a union official representing personal care workers who were responding to the pandemic, described her members as feeling like they were ‘on the bottom of the Titanic ship’.

Senior counsel said the role of allied health in aged care is fundamental, as is access to oral and dental, and mental health treatment and services.

  • Mrs Beryl Hawkins, aged 91 years, gave evidence in the first of several hearings which were conducted by the Royal Commission virtually in 2020. Appearing by telephone, Mrs Hawkins said that she has not been able to afford dentures or to use her home care package towards the costs of dentures or other oral and dental treatment. Mrs Hawkins lives on her own in state housing. Mrs Hawkins waited two years for a level 3 home care package.
  • Ms Merle Mitchell AM, aged 85 years, shared with the Royal Commission her experiences of living in a residential aged care facility in May 2019 and more recently, in the COVID-19 hearing. Ms Mitchell explained that she feels that life in a residential aged care facility is not a home, it’s an institution, it’s where you live.

In closing their overview of individual stories, they said the words of Ms Eileen Kramer are worth recalling:

At 105 ½ years of age, Ms Kramer is the oldest witness to give evidence in this Royal Commission. Like all of the older people and their families who have opened their lives to the work of this Royal Commission, who have shared their experience of their struggles with the aged care system, Ms Kramer is a remarkable person.

Having had a successful career in modern dance and the arts overseas, Ms Kramer returned to Sydney when she was 99. She now lives in a residential aged care facility and continues to work choreographing a new dance, writing and producing artworks. Ms Kramer is a reminder that there is much to learn from our older people.

Ms Kramer memorably urged us to ‘Look after the house so the spirit can enjoy life’. With this in mind, we submit it is the responsibility of the aged care system to support and nurture our older people.


Recommendations for the Royal Commission to consider

Senior counsel said the final report of the Royal Commission “will represent the culmination of the Commission’s nearly two and half year inquiry into aged care quality and safety” and be the “basis for judging the quality of the inquiry process and the credibility of findings”.

They said while all of their 124 recommendations are important, the most significant are:

  • a new Act based on human rights principles for older people
  • a new planning regime for aged care which provides demand-driven access rather than the current rationed approach
  • a new and independent process for setting aged care quality standards
  • a new enforceable general duty of care on approved providers
  • mandated staffing ratios in residential aged care
  • compulsory registration of personal care workers
  • an independent pricing authority that will determine aged care prices appropriate to the provision of high quality and safe aged care services
  • an independent Australian Aged Care Commission that will be responsible for administering and regulating the aged care system.

Responses to the closing submission

Leading Aged Services Australia

Australian College of Nurses

Australian Medical Association

Consumers Health Forum of Australia

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