Aged care is one of the few areas where consumer action has been slow in coming. Research has shown us that hospitals are safer and better when the consumer voice is heard. That is why they employ patient advocates and support community advisory committees.

Those who have actually experienced a particular health service often have a fresh perspective to offer. They see things through a different glass.

Yet in aged care, the consumer/carer voice is rarely heard. I doubt it is heard at all those big conferences on aged care or on the various committees and boards where aged-care policy is discussed. The one exception I can think of is the recent review of the Aged Care Complaints Investigation Scheme review conducted by Associate Professor Merrilyn Walton where individuals and families were consulted as well as the usual peak bodies and provider groups.

In aged care the culture is too much about knowing what’s best for ageing people – without asking families their views. It is too much about ‘them and us’ ignoring the disagreeable fact that we all get old and most of us will eventually need some kind of care.  

Of course the response to this view is that it is impossible to include frail older people in all the talk fests on aged care. It is true that it is difficult as people at the end of life often experience high levels of disability yet there some residents within our aged-care homes who would have valuable insights to offer.

I think my mother, for example, might have mentioned something about the quality of food she was offered after the food production was out-sourced at her nursing home. Sadly, one of the factors preventing the aged voice being heard is the fear of retribution if people do, in fact, speak their mind.

In any case, the families with loved ones in care have much to say. Aged Care Crisis hears it every day. And it is time that policy makers listened as there is much to learn about how we care for older people and the difficulties that we must try to overcome.

We should also remember that, with the best will in the world, it is hard for the aged care professional not to become desensitised.to the difficult task they do. People at the end of life find that they can quite easily become merely... a ‘feed’, a ‘shower’ or a ‘toilet change’! The consumer voice can mitigate such institutionalisation.

Here are some questions for starters.

• Why aren’t consumer/carer advocates – individuals who have had recent experience of the aged-care system themselves - present on all those accreditation panels that go around checking on nursing homes and hostels? People who have been travelling beside their family member in aged care homes might have some quite different things to say about the standards of care, about the food being served and about the staff/resident ratios.
• Why aren’t there resident and family committees in every residential care facility – ones that are supported, not patronised and have their concerns taken seriously?
• Why aren’t there places provided for those who are currently experiencing the aged care system for their family members at all those big conferences that occur so that their voice is heard in those discussions?
• Why isn’t far more cognisance given to complaints made by families about the care provided in homes – here is a rich source of data which seems to be generally ignored.

For too long the consumer voice has been absent from aged care. That is why families must walk beside their frail aged relative and speak about what they see and hear and why those who are responsible for providing the care for people at the end of life should listen to them.

A new funding arrangement for hospitals looks like happening. Included in the deal are new initiatives affecting the delivery of aged care across the country. The Commonwealth is to be responsible for all aged-care programs and more aged-care beds are to be provided.

One of the announcements that has not received much publicity is that $96 million dollars, over four years, is to be provided to improve access to GP and primary health services in aged care.

The CEO of the peak industry body, Aged and Community Care Victoria, Gerard Mansour, must live on a different planet from most of us.

Just this last week he stated that mandated staff/resident ratios were 'outdated and inappropriate'. He claims that this is because 'staff skills were matched to residents' needs which can vary substantially from one location to the next'.

Tell that to the overstretched and undervalued carers and nurses who feel that they can never get the job done or to the residents who must wait for long periods to receive the care they urgently need.

There are mandated staffing levels in child care centres, kindergartens, schools and hospitals. They, too, cater for people with different levels of  need in different locations.

Why should vulnerable frail, older people miss out on this protection?

The much publicised My School web site goes online today. 

Deputy Prime Minister, Julia Gillard, states that, for the first time, parents across Australia will be able to get accurate information about how their child’s school is performing. The results of each school’s performance in the National Assessment Program tests are published online for all to see. Colour coding shows at a glance whether the school is performing above or below similar schools and how it compares to the national average...

How do they get away with it? Year after year we hear politicians and aged-care bureaucrats waffling on about "appropriate levels of care" – words that mean nothing at all and allow shonky aged-care providers to staff their homes with dangerously low levels of nurses and carers...

A friend of mine, aged 96, died this week. Death is always sad but my friend remained living in her own home until the very day she died and so her friends and family are able to take great comfort in that.  I have heard it said that there are more deaths in nursing homes at Christmas than at other times of the year. It would be interesting to know if this is, in fact, true.

Tuning in to local ABC radio the other night I heard some aged-care guru telling the world how ageing baby boomers would expect chai soy lattes along with their residential aged care. Sure! Along with their blackberries, lap tops and iPhones! At times, you wonder whether some of these experts on aged care have set foot in the door of an aged-care home lately.

Forget the latte and worry about whether you can get someone to help you get to the toilet in time.

The National Health and Hospital Reform Report purports to provide the basis for a series of promised reforms to Australia's system of health care.

It is 'the culmination of 16 months of discussion, debate, consultation, research and deliberation by a team dedicated to the cause of strengthening and improving our health system for this and future generations of Australians'...

Sometimes you see, or read, something that makes your brain just snap. This did it for me today. It is a son's account of the lack of services provided for his mother who is in now in residential care.

'My mother left hospital unable to walk independently. She was placed in transitional care with the promise of intensive physiotherapy.'
Of course, his mother never walked again.

The management at the nursing home I visit has decided that having a registered nurse on duty is a luxury it can no longer afford. 

They now think it is enough to have an RN on call. This one person, who does not need to be on the premises, is responsible for the health and well-being of 30 high care residents and approximately 150 low-care residents.

The much-awaited report from the National Health and Hospitals Reform Commission has just been released.   The Prime Minister and the Minister for Health and Ageing are now engaged in a 6 months consultation process with various health bodies and stakeholders.

There are 123 recommendations.  Some of them pertain to how we care for people at the end of life. One that has received much publicity relates to the possible introduction of bonds for high care – 'that consideration be given to permitting accommodation bonds or alternative approaches as options for payment for accommodation for people entering high care'. This did, of course, immediately send everyone to their entrenched positions. Providers see bonds as the answer to all their problems. Others are worried about people having to sell their homes at a time of crisis and great trauma...

The most disturbing aspect of the recent Four Corners Program featuring four families dissatisfied with aged care was that the complainants’ voices were not heard – by anyone! They were not heard at the home providing care and the Commonwealth complaints investigators did not listen...

The Australian Medical Association (AMA) has called for more nurses to be employed in aged care homes.  They say that this needs to be done to prevent dangerously sub-standard medical care from occurring.

Of course, many of us have known this for years. We have seen our family members sent back and forth in ambulances to emergency departments for minor complaints because there have been no trained health professionals on the premises.

We have sat with our mothers and fathers as they have waited for stressed and harried staff members to attend to them. We have seen the reliance of homes on agency staff who don’t know, or understand, our family member’s care needs and we have noted the increasing dependence on immigrant carers who are unable to communicate adequately with the residents in their care...

Sanctions have just been imposed on another Victorian nursing home. It is reported that lack of food, drinks and inadequate health care were just some of the problems found by the accreditors.  There are now four facilities in Victorian experiencing sanctions. Nationally, there are 11 under sanction.

The news reports on these latest sanctions are just coming in as this Column is being written. They contain several interesting features.

During the January holiday period, it was reported in one of the broadsheets that, due to the global financial crisis, more families would be seeking residential care for aged relatives. This, explained the journalist, was because families under pressure would not be able to run around looking after Mum. Too costly in both time and money! Thus, he opined, aged care would be one of the few areas which would actually be expanding its workforce and therefore a sector for the unemployed to keep in mind.

ABC’s Lateline Program last night featured the appalling lack of dentistry within many of Australia’s aged-care facilities.

Who looks after the mouths and teeth of those who live in facilities for the frail and old? Hardly anyone, it seems? I can’t remember ever seeing a dentist, dental therapist or dental hygienist, in any of the homes that I regularly visit. 

The dentist on Lateline, Dr Clive Rogers, said that it was not uncommon to find several abscesses in the mouths of the residents he sees. Ouch!! Ever had an abscess on a tooth?? He goes on to tell, and show, us the massive build up of food and plaque in the mouths of the frail older people he is checking. It is not a pretty sight.

While the media covers the horrendous world news of terrorist attacks and airport closures, it is easy to see that most people will not have noticed the further lowering of aged-care standards here at home.

Victorian Uniting Aged Care has just retrenched ten division one nurses from two of their aged care facilities – joining the ranks of the private-for-profit facilities that place cost-cutting and budgets over people and quality care. 

How many of us know who actually owns the aged-care homes where our frail, older friends and relatives live? 

Often there is a web of complex structures behind the day-to-day management of the facility. It is hard to know just who is responsible.

This week ABC Lateline viewers were treated to the spectacle of the Minister for Ageing, ex-policewoman, Justine Elliot, totally not up to the task of explaining to Tony Jones, and to the rest of us, how it is has come to pass that commonwealth-funded aged-care facilities catering for remote Indigenous communities are not even expected to meet the 44 standards required by all other facilities within Australia. 

Furthermore, she was unable to explain how it is that people experiencing dementia and those who are bedridden can be left overnight unattended and unprotected - with no staff on duty at all. Of course, the inevitable occurred, with the tragic death of a resident.  

A Victorian nursing home fails 30 standards out of 44. How did it get to this? 

There are issues with hygiene, nutrition medication delivery and much more. The latest audit by the Aged Care Standards and Accreditation Agency has revealed these problems – thankfully, at last. That is what the Accreditation Agency is there to do because these are people who cannot speak for themselves. They just have to take what they get – in terms of care and respect. And clearly these residents were taking buckets and buckets of poor care and neglect – and for some considerable time.
But the thing that is so worrying about this is that it is reported that action was only taken after complaints were forwarded to the Department of Health and Ageing. Relatives of residents claim that the complaints go back to 2005 when this place opened. It is also reported that the facility has had eight directors of nursing in three years. Now you would think that that, in itself, might tell somebody something.
No wonder people are frightened of being placed by their family in a nursing home when they hear of such things.

This columnist is not surprised by what has been found, given the huge, unresolved staffing issues around aged care.

I also think that the public need to know what is going on behind some of these closed doors. But it should never be allowed to get to this stage.

It seems from the reports that some family members knew that the care provided at this facility was way below standard.

The question is … why was their voice not heard?

A common theme of much of the media comment made by our current Minister for Ageing, Justine Elliot, is that she makes no apology for the fact that her priority is ensuring that frail aged and vulnerable seniors are protected.   

If only she did - ensure that frail people receive proper protection - that is. Because, in spite of her repetitive, ‘no apology’ statement, current protection measures for vulnerable people in residential care are just not good enough...

We are currently witnessing another aged care disaster, but does anyone care? It is astounding that there has been so little public outcry about the failure of a Victorian aged care facility to provide for its vulnerable, frail residents. What an enormous breach of trust...

Can you believe it? It has come to light that the officials investigating the deaths of five residents in a Melbourne nursing home NEVER LEFT THE FACILITY’S OFFICE!

They checked the paperwork but didn’t talk to the recipients of the care. Even worse, it seems that one resident (who subsequently died) was CALLING OUT FOR HELP during the visit but his cries were not heard because all the action was in the office!

Surveys about ageing usually reveal that what people fear most is not death itself, but rather the loss of personal control that often comes with the ageing process. Such fears are increased when stories of abuse, neglect and gruesome body part games come to light.

The year ends on a ghastly note for aged care. Today, the Herald Sun reports on how some staff at a Victorian aged care facility thought it was fun to take pictures of the bodies of frail residents and play a ‘guess who?' game at a party at the local golf club...

The election is almost upon us and it would hard to know that there was such a thing as aged care. Frail Australians have barely had a look in – in spite of the billions of dollars being thrown about. Residents of nursing homes have missed out yet again.

The recent report on the often-neglectful treatment of frail, aged people in hospital comes as no surprise to many of us.

Who has not experienced seeing ill, aged relatives struggle to manage in acute-care hospital wards? For example, assistance with meals often just does not occur and so, in many instances, family members have to time their visits in order to ensure that their relative is adequately nourished...

Evidently Australia is awash with money – 34 billion dollars worth of tax cuts coming our way soon.  Then there is all the money spent on tax-payer-funded political advertising – more billions....

It has become a common phenomenon for politicians to respond to problems with the defensive 'best in the world' response.

This year's election battle is well underway. Our political leaders are campaigning non-stop. The pork barreling has started. And ageism is rampant. The classic example is when almost everyone considers that rehabilitation and aged care isn’t worth a crumpet...

Very few of us wish to dwell on how the last years of our life might play out. If we did, we would surely pay more attention to the increasing privatisation of aged-care services.  Do we really want our end-of-life experience to be defined by market forces?  Should the desire for profit underpin the care of those who can no longer care for themselves?...

The Melbourne Age is reporting regularly on the court case currently running between the management of Primelife and former CEO, multi-millionaire Ted Sent. There have been days of reports of alleged incidents of phone taps, video surveillance, payments to ‘underworld’ figures and secret taping of board meetings...

Just this last week, the Vice-Chancellor of Monash University, Richard Larkins, told a conference of the Royal Australasian College of Physicians that health care was being wasted on prolonging the lives of old Australians at the expense of people who sometimes died on hospital waiting lists. Now there's one for the ethicists. When exactly does an individual reach the age that good health care can be considered to be a waste of time and space?...

Senator Santoro has stated that he is very keen to encourage community participation within the Australian aged-care system. Indeed, the 1997 Aged Care Act makes provision for some level of community involvement through the creation of Aged Care Planning Advisory Committees (ACPACs) in each state. As well, the Minister receives advice from the Commonwealth Aged Care Advisory Committee (ACAC), which came to prominence during the recent publicity concerning elder abuse/neglect and the ensuing debate on mandatory reporting.

Money can buy anything these days. It can even buy a visitor for your mother in a nursing home. Yep, the aged-care consultants, agents and brokers will not only find you an aged-care place but they will also organise on-going visits to your family member or friend - for a fee! One wonders how it has come this.

One can barely imagine the trauma, pain and suffering experienced by a frail older person who sustains a fracture from falling. Yet it isn’t an uncommon experience. A recent Melbourne study indicates that falls account for 38 percent of all hospital injuries.
Osteoporosis Australia suggests that a fifth of those who break a hip will die within six months and, of those who live, one half will be unable to live independently.

Every time a new aged-care scandal breaks, trust and confidence in the entire system of care is diminished. How can anyone have peace of mind when they hear of the neglect or abuse of frail people in residential care? After all, any one of us might need full-time care at some future date?...

Victorian Public Advocate, Julian Gardner, has recently been on the air waves, and in the print media, espousing the view that the current demand for mandatory reporting is simply a 'knee jerk' reaction to the recent shocking allegations of sexual assault of frail older people in care. "It might look like action," he states and then proceeds to tell us why it’s really not.

Another study, another report. Yet again, we hear that many of our frail older citizens are undernourished.  This time, it’s a study by Western Health Services in Victoria - reported in The Age newspaper earlier this month.