What people who see the consequences are saying
The industry and politicians have repeatedly denied, explained away and insisted that what all these reports revealed were sensational press beatups or isolated and not systemic problems. To realise that it is none of these you only have to look at what nurses and families with real experience of the system are saying.
While there are examples of people who have experienced good care and write about it, the large number of people who are aware of problems and have unsatisfactory experiences and who write about it far out number them. Speaking out requires courage and a threat of retribution so there are likely to be many more.
There have been two recent government Inquiries in NSW and two in the Australian senate. There are many submissions from people who have experience of or who have studied what is happening in aged care in Australia. It is only possible to select out a few representative or relevant fragments from these. If you need further persuading look at the rest by going to the links.
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Future of Australia’s aged care sector workforce
Inquiry by Senate Community Affairs References Committee 2016
To see what has happened and is happening in aged care today we need only look at submissions to the 2016 Senate Community Affairs References Committee Inquiry. Of the 315 submissions there are approximately 73 (25%) from staff or family members with direct experience of what is actually happening in aged care. Many of them are nurses with many years of experience.
While the inquiry was about workforce the impact of what these people are saying on the lives of residents is glaringly apparent. As the Centre for Sustainable Organisations and Work indicated in their submission “job quality is a necessary precondition to the provision of good quality aged care services” also expressed as “the conditions of work are the conditions of care”. Job quality is largely determined by the context within which the work is carried out. These submissions describe the context within which aged care workers carry out their work and it is a dreadful indictment not only of our aged care system but of the society that has stood by while this happened.
The following submissions many of them quite short show exactly what is happening in our aged care system.
Submission Numbers 3, 6, 8, 9, 10, 18, 21, 23, 25, 29, 34, 40, 42, 55, 69, 74, 79, 80, 81, 82, 88, 93, 98, 111, 113, 115, 117, 123, 124, 126, 129, 130, 132, 141, 156, 157, 159, 1 61, 164, 166, 167, 173, 176, 177, 181, 182, 186, 192, 196, 198, 207, 216, 218, 224, 231, 234, 252, 257, 258, 259, 260, 261, 262, 264, 265, 266, 267, 271, 274, 286, 287, 288
I have selected short illustrative quotes from some but there is much more in these submissions. The submission number precedes the quote:
129: If there was anything that I could say to the senate. Something that I hope they would listen too. Is please, please open your eyes, your hearts, your minds and really look at aged care in Australia.
132: We are now an industry that has been highjacked by big business. Care of our residents and staff come a very distant second. It is all about the bottom line not the care of our residents or our staff. - - - In services that talk about “person centred care”, the organisation talks the talk but does not walk the walk.
156: Please, please change things. At the risk of sounding melodramatic, the aged care system is truly a hidden humanitarian crisis.
198: I have been a nurse for 48 years and have seen nursing care for the elderly decline to an abhorrent level - - .
216: I do not want to ever be put in to a nursing home!! - - - - due to the low staffing levels l was concerned and regularly dismayed at the treatment endured by the residents of these high level care facilities.
218: - - - - the litany of distress and needless suffering might make any of us wonder if we really want to get old.
231: I hope you will also hear the voices of many individual aged care workers, aged care clients and their families because statistics and data rarely shed light on the real impact of policy decisions.
233 (family member): The aged care sector needs a massive overhaul.
234: I have been in number of meetings with General and care managers at these homes to inform them that this was the wrong skill set for safe practice in nursing homes but are repeatedly shot down by the corporate buearocrats at these large aged care providers and training organisations.
257: I do not believe that the residents receive adequate care, and more staff are required in order to make sure that the care is given properly The employers always say that they cannot afford to hire more staff, but at the end of the financial year, they have millions of dollars in profit (even if they are a not-for-profit business).
---- The accreditation process is useless. Management usually puts on more staff (or ensures staffing is covered) when a visit is scheduled.
—— Legislation needs to be tightened to stop facility managers cutting corners and using loopholes to save money
258: What I have found is that no matter where you work in aged care the staffing per client ratio is really bad.
---- The food in these places is really really bad. - - Most of these clients have dentures and are unable to eat the rubbery toast and that goes for a lot of the meat in roast etc as well
---- Some staff in these facilities should not be there. There is no care what so ever and I include management in that statement. In fact management is the worst.
259: The workforce in aged care is ill prepared to deal with the issues around dementia, and aged care facilities are not appropriately designed to meet the specific needs of people with dementia.
260: Aged care is a dangerous field to begin your nursing career. You are provided with little supplies, bare minimum knowledge of the elderly and completely unrealistic expectations. - - - I feel stressed at work. I feel unappreciated by my managers - - - .Our elderly are being neglected.
261: I have also worked with people that should have left the industry years ago. The one constant in the time I have been in the industry is staff shortages and the constant cutting of corners due to time and financial constraints.
271: Speaking from experience working in aged care facilities I am disappointed with the quality of care provided to this sector. - - - residents left in wet/dirty continence aids for far too long, - - - left sitting in day rooms or bedrooms with little or no stimulation.- - - - - - malnourished because they are unable to feed themselves and there is insufficient staffing to assist all residents who require help with meals.- - - going from resident to resident with little or no hand hygiene
273: The system is in disrepute. I do not blame the nurses. They are overworked and underpaid.- - - - Some staff simply “do not know what they don’t know”.
279: I am a retired Professor of Aged Care Nursing. - - - - it must be blindingly obvious from all reports that Aged Care is in crisis. - - - - What concerns me is that people die after years of criminal neglect, without adequate nursing care.
280: Aged care is like a monster that devours vast resources & finances, but with our population ageing, it must be addressed.
286: WAS EXCITED TO BE AT THE FORE FRONT OF PIONEERING ‘A BETTER WAY’!! Now, 30+ years later, I am very disappointed with how I see aged care going in our society. I always thought that integral to care provision, was to demonstrate to our frail elderly, that they were VALUABLE individuals, worthy of quality care and respect. Sadly, we are failing miserably in achieving this!
---- we have a system which DEVALUES residents, tricks their families and loved one’s by selling them poor staffing ratios and access to professionals in caring for their loved ones.
---- It is horrendous the deceit that prevails and anyone who is prepared to speak up to uncover it, is quickly ‘short shrifted’ out of the home, something that has happened to me personally a couple of times during my journey. IT DOESN’T PAY TO ROCK THE BOAT – - - - most are constantly looking for ways of reducing their costs.
---- most organisations, be they for profit or not, have hugely ‘top heavy’ hierarchies which consist of many very well paid executives who are ‘once removed’ from the realities occurring at the coal face.
---- I am - - - just someone who sees gross injustices occurring every day.
287: I am baffled by ‘aged care palaces’ that I worked in; facilities with magnificent interior design and no staff! - - - -Please can we focus on humanity for residents, rather than ‘glamour’
288: Over the years I have watched the industry move from a care industry where christian agencies were trying to care for their community to a business whereby private operators are concerned about share profits rather than provision of care.
---- Everyone talks about a person centred approach to care but these are words only as our research demonstrates that the work is task focused
The system is broken and needs a complete overhaul
Source: Future of Australia’s aged care sector workforce. Inquiry by Senate Community Affairs References Committee 2016
Registered nurses in New South Wales nursing homes
General Purpose Standing Committee No. 3 Legislative Council NSW
As indicated ealier the section specifying required staffing was quietly and completely removed from the Quality of Care Principles (1st October 1997) in August 1998.
Only NSW maintained regulations which specified conditions where there should be at least one registered nurse on duty at all times. But in 2015 there was strong pressure from the industry and sympathetic government politicians to remove this requirement. There was a public backlash with many articles in the press. The Legislative Assembly mounted an inquiry to which there were 165 submissions many from nurses and families. There was plenty of criticism of aged care services and strong opposition to the changes. Those with experience described what was happening. The committee advised against changing the requirement.
Many of the submissions had large sections removed before publication but there was enough to reveal the sentiments. The following short extracts were taken from some of the first 50 submissions. The submission number precedes the quote.
1: The lack of staff shocked me and often I would see people wandering looking for a drink of water or to be shown the toilet.
The lack of respect from the nurses also shocked me as they treated the patients like small stupid children - - -
6: - - - in contrast to most of the places I had visited while searching for a nursing home, where there was a strong smell of urine when you walked in the front door and often a bleak atmosphere.
8: I can't even begin to fathom how the Government could even propose this RIDICULOUS, STUPID, UNBELIEVABLE THING!!! Wake up Government and all the do gooders in it!
TO BE HONEST - YOU ARE MAKING ME SO ANGRY WITH THIS STUPID IDEA - Aged Care Facilities don't have enough staff as it is and you want to take away the TRAINED STAFF - SHAME ON YOU.
10: You are sending the message that the elderly don’t matter and don’t deserve to be looked after properly.
11: I have witnessed confusion amongst the staff from different countries, not being able to fully understand each other.
12: I am extremely concerned and somewhat dumbfounded that there is any consideration necessary of whether there is a need for registered nurses in aged care facilities.
15: The thought that Registered Nurse not be on site and available 24/7 in Nursing Homes and Aged Care facilities is unthinkable and appalling.
18: I don't want to live in an understaffed under funded facility.
21a: I was amazed at the dozens of stories of abuse, cover ups, lies, neglect and straight out rudeness at some facilities, which line up with media exposes at some facilities and specific instances, and it would appear that very little has been learned from these instances even when coroners were critical. Instances of proven cover ups lies, false death certificate but it is ok as they retained their 100% accreditation making current accreditation a meaningless joke.- - — - We appear to have developed a culture of denial.
25: I am writing this submission as I feel that the suggestion that there is not a need for RNs in Aged care is appalling.
27: You may find yourselves in one of these dreadful facilities. I urge you not to reduce RNs in aged care facilities
28: RN's have the education to treat and manage the health client. I know I want an RN 24/7 when I am in an aged care facility for my safety.
29: The proposed changes that could see Registered Nurses removed from residential aged care facilities would have a very detrimental effect on the quality of residents’ care
30: The registered nurses had to spend far too much time on paperwork and were not around the patients for most of their shift.
32: I write to express my first hand knowledge of the absolute necessity of having registered nurses in nursing homes at all times
40: Rns play a vital role in keeping residents safety and comfort. Without them, resident's lives will be in danger.
51: Over the years in working in aged care I have seen a change in the quality of care that has been provided to residents.
Source: Registered nurses in New South Wales nursing homes General Purpose Standing Committee No. 3 Legislative Council NSW
The final report recommending that nurses be retained is here.
The government simply rejected the committees report and did what the aged care provider lobby wanted. They are removing the requirement for registered nurses in nursing homes. It seems they can dictate policy. The Sydney Morning Herald listed the list of consumer groups and medical groups that had pressed for nurses to be retained.
- NSW Government abandons 24/7 nursing in aged care homes Sydney Morning Herald 30 Apr 2016
The full government response is here
ACSA, the body representing not-for-profit providers wrote officially to the members of parliament who supported the removal of the requirement for registered nurses saying "The aged care sector welcomes this great decision. It allows us to keep aged care services in places where there are no other services, and to meet the needs of the local community". Doctors, nurses, and community had all called for the nurses to be retained.
- Letter of Thanks to MPs -9 May 2016.docx ACSA web site
Violence, abuse and neglect in institutional and residential settings
Senate Community Affairs References Committee Nov 2015
This inquiry was into the abuse of the disabled in institutional situations. Although the inquiry had been precipitated by horrendous accounts of sexual and physical abuse in disability services, the inquiry was very clear that many elderly people in aged care facilities were physically and mentally disabled. They were equally concerned about the elderly in aged care facilities and several of their examples were from aged care facilities. Many young and also older long term disabled ended up in nursing homes.
The social pressures as well as the market and management dynamics of the two sectors are the same. While there are some differences the problems are very similar. There are 161 submissions. The report contained only a small selection of the large number of instances of abuse. The report referred to the extensive evidence given in private sessions with those who had been abused. Below are a few quotes from their 315 page report. Aged care is addressed more specifically and with examples on pages 52 to 57, 88 and 191.
As one submitter wrote, these issues make people feel uncomfortable and most would prefer to take the easy option and pretend that nothing is wrong. But the reality is far different - the situation for people with disability is unacceptable.
Throughout this inquiry, the evidence presented from people with disability, their families and advocates, showed that a root cause of violence, abuse and neglect of people with disability begins with the de-valuing of people with disability. This de- valuing permeates the attitudes of individual disability workers, service delivery organisations and most disturbingly, government systems designed to protect the rights of individuals.
This inquiry heard highly distressing personal accounts from many people with disability. The inquiry also heard from dedicated family members and advocates speaking on behalf of loved ones, some of whom died as a result of violence or neglect.
The committee is very disturbed by the significant body of evidence it has received which details the cruel, inappropriate and, in many cases, unlawful treatment of Australians with disability. The committee is equally disturbed by the largely inadequate responses that these cases have received when reported to authorities and people in positions of responsibility. The committee is also concerned by the fact that many more cases remain unreported, partly as a result of inadequate responses to reporting. This is clearly unacceptable.
This chapter will focus on evidence relating to lived experiences in the general community and institutions—such as residential care, and aged care.
- - - - these accounts barely scratch the surface when compared to the huge body of lived experience evidence provided to the committee both in submissions and at hearings.
Taken as a whole, the evidence shows a systemic failure to protect people with disability, and has influenced the recommendations made in the final chapter of this inquiry report.
The committee has been humbled and shocked by the many examples of lived experience. Each person's personal experience is important and valued, but it is only by taking a consolidated view of this evidence that the enormity of the mistreatment of people with disability in Australia is demonstrated.
People with a disability are most likely to be abused in segregated service environments, where abusive practices go unrecognised and unreported and where client and family participation in services is devalued.
An issue that was repeatedly raised by different submitters to this inquiry is that the abuse reporting mechanisms, discussed in greater detail in chapter five, do not adequately protect people from abuse. In some cases, reporting mechanisms can actually cause abuse: (NB The example given of this was from aged care)
The inquiry received evidence from submitters in various states and territories, detailing the abuse of people with disability, often age-related disability, in aged care facilities.
Similar to other forms of residential care, aged care residents are particularly vulnerable to violence, abuse and neglect due to their age, frailty and specific disabilities such as dementia.
Those who live in aged care facilities face much the same risks as those living in other cared accommodation.
Concluding committee view
3.68 The committee also notes the high rates of abuse of people with disability that occur in aged care and the general community, with limited adequate response from mainstream reporting and investigating mechanisms. Clearly, protecting vulnerable Australians in aged care and the general community should be given greater focus from all levels of government.
Source: Violence, abuse and neglect against people with disability in institutional and residential settings, including the gender and age related dimensions, and the particular situation of Aboriginal and Torres Strait Islander people with disability, and culturally and linguistically diverse people with disability. Community Affairs References Committee November 2015
Elder abuse in New South Wales (Inquiry) 2015-16
General Purpose Standing Committee No. 2. Legislative Council inquiry
This inquiry was far more broadly focused and dealt with elder abuse issues more generally and in the community. Three of the 122 submissions dealt more specifically with abusive care in nursing homes. They either had direct experience as staff, academics doing research or dealt with families whose members had been abused in nursing homes. The final report is awaited. The submission number precedes the quote:
5: I am very concerned about elder abuse that is happening within the current system of Residential Aged care Facilities.
---- Even when residents are dying, there can be neglect and lack of quality care. When RNs are too busy to support the family, and to anticipate and manage the symptoms of the person dying, there is abuse
67: QACAG is concerned at the gap between what ‘should’ happen and what actually does. Similar accounts to these below are raised every time QACAG consults it own members or speaks to community groups, and frequently forms the basis for people initiating contact with our group.
The most common concerns that members raise are: dehydration, poor nutrition, poor pain management, hurried care, aggression from other residents, poor continence care, and poor level of social activity or human interaction. These are frequently connected to poor staff number and skill mix of staff, and the focus on task-orientated care, rather holistic care.
One practice that warrants a particular mention is rationing of continence pads
72 (Multiple examples of abuse seen by Aged Care academic): I heard about abuse, I witnessed abuse and neglect and I have experienced the consequences of reporting abuse.
---- Abuse ranges in severity from grossly unacceptable acts to acts of unkindness, absence of care, carelessness, negligence and ignorance of appropriate clinical care.
---- There is a broad disparity in the quality of care delivered to frail, older people in residential aged care facilities with no surety of quality care offered by the accreditation and standards monitoring system.
Source: Elder abuse in New South Wales (Inquiry) 2015-16 General Purpose Standing Committee No. 2. Legislative Council inquiry
Much more information
If you are not persuaded yet, then many of the articles published that invite comments, as in The Age or Australian Ageing Agenda, elicit strong agreement or disagreement setting out experiences at the coalface to confirm or else contest the articles. Here is an example responding to an article in the Sydney Morning Herald and more comment in The Age. A radio interview from an industry spokesperson claiming we have a world class system has drawn an angry response from those who listened to the programme. Some very critical comment followed an article promoting the governments Aged Care Roadmap. They express the cynicism aroused by this thinly disguised plan to make families pay more in order to fuel the profitability and growth of corporate interests and drive their policy agenda.
- Aged care Saturday Extra 11 June 2016
- Aged Care Roadmap: what will aged care look like in a decade? Australian Ageing Agenda 13 July 2016
Sometimes nurses are stimulated to write letters to the press explaining what is happening in the nursing homes. How many others can no longer tolerate it, finally despair and walk away?
- Nurse's letter: aged care more about business than care CQ News Feb 19 2015
- Society: Working in aged care is a thankless task Letters The Age 23 April 2016
- Aged care woes build Letter to the Age 5 Jul 2016
- Miserly cutbacks Letters to the editor The Age 6 July 2016
Others talk to organisations that are trying to address the problems
- Overworked and underpaid: who will care for our nurses? CPSA 14 Oct 2016
A nurse who has worked in multiple nursing homes in South Australia spoke out about what she had seen across the sector on Channel 10 TV. The link to the interview is below.
- Whistleblowers worried Ten News 16 June 2016
Family members publicise their difficulties on consumer web sites including Inside Aged Care.
- Why can't I get the records regarding my father's care? Patient Opinion June 2016 (A close relative who was unhappy about care found out just how difficult it was to find out what happened.)
- Personal experience of care Contribution to Inside Aged Care August 2016 (a daughter describes problems in a facility)
Dr Bernoth is a nurse academic whose research revealed failures in care. After describing how she was persecuted and threatened when she tried to write about her findings, she discusses how multiple reports of failures in care are simply ignored. She describes the training programs she uses to humanise and inspire students. Although she herself does most of her work in the community not-for-profit sector she also refers to the problems in the for profit sector.
- DR MAREE BERNOTH: PREVENTING ELDER ABUSE IN AGED CARE Radio Adelaide Digital 21Jun 2016
Change.org petitions: Failures in aged care touch many families. When there are strong feeling in the community then many sign petitions explaining their reasons and personal experiences. These elicit large numbers of comments . You can page through hundreds at the foot of these pages.
- INTFPCompanyB Aged Care: Encourage Encourage INTFPCompanyB worldwide to focus on residents not 154% profit (12000 signatures in 2 weeks Aug 2016)
- Stop Elderly Abuse In Aged Care ... Support Video Surveillance Cameras In Residents Rooms (42,000 signatures in 7 months Aug 2016)
Finally, if you think that this is something new and has not been going on for years then if you did not follow this link on the previous page do so now.
- Ten Years - what’s changed - a collection of comments submitted to a federal government inquiry in 2005.
On the web page Response to early failures in this section i wrote about and provided a link to web pages that examined the multiple inquiries into aged care over the years. I have also referred to attempts made to patch the system. These have only provided very temporary relief - it simply gets steadily worse the longer we refuse to look at the real problems.
The comment below from a daughter illustrates the way most of us disengage until it is too late to do something about it. The article tells the story.
"I've always heard about the deficits in the aged care sector, but until you've got someone in one of those facilities and you see it first hand, you don't really realise how big those gaps are and how much they're damaging an individual's life, which then has a domino effect on the rest of the family."
"I think it's perhaps - as John Howard was fond of saying - aged care isn't a barbecue stopper," she said. "The aged care resident is largely invisible and doesn't have a voice."
Source: Hunter nursing home sued over resident's death Newcastle Herald 30 Oct 2016
If you are still not persuaded by so much information then I hope you will realise that large numbers of people are very unhappy and have concluded that the system is broken. As we both know, there is no objectively collected data to resolve the differences of opinion. It is not possible for you to argue against the need to collect and evaluate data. The proposed Community Aged Care Hub is the best way to independently collect accurate aged care data. If you have a better way please speak out.
Getting support from your critics.
In the US large industry groups have sometimes used the strategy of enlisting their critics to support them. By funding and staffing a sham community organisation with a web site they induce large numbers of unsuspecting members of the public, many of whom are critical of the industry to register and sign up. Their participation is then used to lobby or pressure government. Few of those signing know who is behind the web site even if it is in small print somewhere on the site. Their participation is then used to drive the industry’s agenda.
It is very interesting to look at the AgeWell campaign in South Australia. It is the public relations arm of NACA (National Aged Care Alliance) the industry dominated group that worked with and designed the present free market aged care system. It has promoted it to the public. It is running a campaign against the steps taken by government to stop the recent gaming of the funding system that has made the big companies so profitable. It is asking visitors to its site to sign its petition and to leave comments.
The comments are exactly those that have been made repeatedly about the system in the past and have nothing to do with the possible impact of the government’s measures to stop rorting. They are using criticisms of the system they have designed to support an attack on the government that is stopping the way they rort the system.
How many of those signing this petition and commenting know who NACA is and what the AgeWell program is about. Do they realise that they are actually supporting and petitioning on behalf of those who are responsible for designing the system that was responsible for the failures they are criticising and think they are campaigning about - failures that occurred while these companies were very profitable.
- Your Stories Agewell Campaign accessed 26 June 2016
I am not suggesting that the changes will not result in further deterioration in staffing and care because they will. Providers will be under pressure to protect they profits by cost cutting.
But we should not be naive and expect any more money we give them to go to care. The system may need better funding but only when it is adjusted to make the providers accountable for how they spend our money.
Our citizens have been deafened by the endless mumbo jumbo.
Can you still hear?
No one is listening to the cries for help. Will you?