Mum has asked me to write to you this Christmas. As you know from her past letters, she is still as bright as a button and proud of her house and garden. She had a nasty fall and ended up in hospital so is now in a wheelchair. We were told by the hospital to find a nursing home as quickly as we can because they need her bed - they even threatened her with an eviction notice.
Initially, we thought we might cope keeping mum at home close to family and friends with some home care, but the unacceptable queues of over 100,000 waiting for home care - some up to 12 months, soon put mum's first choice to an end.
We all looked to see if we could find a good nursing home for mum. Mum was worried because she remembered seeing all those newspaper articles about neglect in aged care, so asked our Aunt Helen. Helen gave up nursing recently because her nursing home made her redundant. Helen gave us a list of things to look for before making what she said was a very important decision.
We were told to go to the government's MyAgedCare website because all the information we needed was there. Mum is pretty good on the computer, but she really struggled with that website and so did we. We eventually found some nursing homes nearby. None of the things on Helen's list were published - only charges, contact information and license to operate details.
We visited heaps of commercial websites and downloaded their glossy brochures to try and get a picture of what life is like. They all looked beautiful with wonderful pictures of healthy looking people who didn't look as if they needed any nursing care at all.
Helen's list says to try and find out the number of very sick patients (she calls them 'high care' and people with dementia) compared with the number of nurses and carers, ask about their qualifications and the staff rosters - especially at night and on weekends. She has written 'important' against food/dietary information. This is followed by fire-safety information, home layout, who the managers are, who owns the nursing homes, how many failed quality measures like pressure sores, weight loss and falls. We haven’t been able to find any of that information on Helen's list.
She says try and find out how many complaints were made and how many were substantiated, but none of that information is available either, and besides, even the justice system aren't happy with the system, but nothing seems to change. We even checked the Aged Care Quality Agency consumer experience and accreditation reports, but there is nothing in them from Helen's list and besides, nearly 98% of them got full marks last year including that recent place described as a house of horrors (Oakden and a bunch of others).
Aunt Helen says to ignore them because all the homes spend months preparing for the accreditors to visit every 3-5 years and it all goes back to normal afterwards. Even all of those yearly spot checks failed to reveal anything at all, but the results of these types of visits are never made public anyway.
Helen warned us that big companies don't have money to spare, so often don’t staff as well and the care is usually not as good. Helen says this information is not on the MyAgedCare website because the government doesn't collect or publish it and we need to ask the nursing homes. The homes we spoke to all said their care is so good they don’t need to collect anything like that.
Mum says that she saw a TV program with the minister and a man who was introduced as a seniors representative. They claimed that our 'aged care system is a global benchmark for best practice' - so good in fact, that the Chinese (and elsewhere) want to buy our system. She's a wily old bird and asked how do we know it's the best in the world if Australian's can't even find out how good our nursing homes are? Do the Chinese know something we don't?
Mum asked how politicians make aged care policy and create ‘the best system in the world’ if they don’t have any data or information? She says you can't make policy in the dark. George Bush did that and look what a mess he made of the world. Mums younger sister Grace who retired from university years ago says that she saw an article by one of her students claiming that evidence showed ‘aged care policy was heading in the wrong direction’ and that ‘care in private for-profit nursing homes is so bad that they are sanctioned by the government more than twice as often as church and community run nursing homes.’ She can’t understand why the department is still claiming they are the same. After all, it's their data the researchers were reporting on.
Our family assumed mum would be cared for by nurses in a 'nursing home'. Helen says that 'nursing homes' aren't actually required to have a 'nurse' on duty all the time, and in some cases, they have none at all. When they are there they manage, but don't nurse. The government says this is not a kindergarden and you don't need regulations for adults who have choices.
Aunt Helen says that because they don't want to mislead the public into thinking that nurses actually do nursing in nursing homes and because they don’t want people to think this is their home, they have changed the name to Residential Aged Care Facilities (RACFs). People know then, what to expect.
Helen says that her nursing union has been trying to get the government to pass laws to make nursing homes employ enough nurses - but politicians won't listen to staff or residents. That is why she lost her job. Unlike Australia, the US Government openly recognise and acknowledge the significance of staffing skills and levels, employee turnover and tenure as a 'vital component of quality care for nursing home residents'. They set out recommended minimum staffing skills and levels that are required for safe care if residents are not to be harmed. These are based on careful research and expert opinion. The US collects and publishes this information for each nursing home online and has been doing so for nearly 20 years.
Helen says that US nursing homes have a third more total staff and double the number of registered nurses compared with Australia. Particularly significant is the low ratio of registered and enrolled nurses. Both the total and the number of support nursing staff are well below the recommended levels in the USA. She says most of the staff now employed to look after the residents have been trained on computers by the new more efficient contracted training companies like 'Vocation' and 'Evoca' that have replaced the old TAFEs. She says most of them have never seen a resident and 'can’t tell the difference between a TicTac and the antipsychotic medication' they give the dementia patients to keep them in bed and stop them being a nuisance.
Helen says that government has redefined old age to change outdated perceptions of sick and old people nearing death with a more optimistic view of active healthy smiling seniors enjoying themselves. They've replaced terms like 'patient' or 'resident' with 'consumer' and heavily promoting 'choice'. Mum asked Helen what happens to people who lose their memory or who are dying? She has friends who got dementia and had others who took many months to die. Mum says that some of her friends with dementia couldn’t choose, and those who died didn’t have a choice and what has she got to choose from anyway, if there is no information?
Patients are vulnerable and can’t make choices like consumers can. Mum can’t understand why if they want her to choose, they don’t give people like her the information they need to make choices - especially when they are as intelligent as she is. Aunt Helen reckons that a bunch of these reviews, inquiries, consultations, summits and stakeholder forums addressing ill thought out reforms, often ignore family and staff contributions. She reckons that government have managed to anaesthetise the general public with all of these complex reforms and fancy labels, just without the use of antipsychotics like those over-prescribed in aged care.
Helen says that her old nursing home has won a business award for its rostering system and is employing a company to advertise this as a great advance in providing care, but she is not sure whom the advance is for. She says with the new market system in place, her company is using the money they saved from sacking nurses, to employing public relations consultants, reputation management, marketing and branding experts as well as business consultants. Its become much more important to attract more consumers to keep the beds full and to pick richer residents. They are employing people to develop impressive looking websites, trained telephonists and salespeople to conduct tours of their facilities. Mum says if more people are sicker in nursing homes and they die so quickly, why are they calling it ‘Living Longer Living Better’?
Some of Helen's friends reckon that being in an Australian nursing home these days is a bit like that psychological horror flick 'House of 9' where a bunch of strangers are kidnapped, drugged, and placed in a home together with no way out.
We are very worried about Mum. She has been on her computer all night searching the internet. She has read about people in nursing homes being raped, robbed, bathed in kerosene, attacked by rodents, poisoned, burnt, cooked and choked to death. She says some staff have amused themselves by mocking and playing demeaning games on them ('spot the body part' or rolled in tomato sauce). There are examples of deaths due to neglect, pressure sores, inadequate medical care and injuries and deaths covered up, families kept in the dark or banned from visiting loved ones. Nurses who have told the police or newspapers about these things have been sacked.
She says she has been reading about pressure sores because residents are lying in faeces and urine for hours on end because incontinence pads are rationed and that there are no nurses to clean them up or turn them regularly. She has seen stories of overgrown nails, untreated infections, medication stuff ups, malnourishment because of poor food and dehydration. She says it goes on and on. She has decided this talk about the best aged care in the world is a furphy. She wants nurses to look after her.
We are getting very worried now because the hospital has started sending Mum threatening letters saying that if she doesn’t choose a nursing home they are going to send her back to the family. We live in a house with two flights of stairs, we both work and have six children at school. We don’t know how we will manage when Mum comes to stay with us.
Please Santa. The family says please don't worry about any presents for us. But PLEASE when you go into the nursing homes this Christmas, would you have a look and see what they had for dinner, if any of them have nurses there to look after the patients, are they clean or does it smell. Can you find us just one nursing home that looks as if the patients are happy and well looked after there? I know Mum would really appreciate it. She says that if she can’t find a nursing home that can care for her and if it is too much of a nuisance to us, she knows how to end it all and we know what that means.
Thank you Santa so much for your help, Annabel and family.
PS. Aunt Helen is very worried. She says please don’t show this letter to anyone. She says that when nurses or even families have told people what happens in nursing homes they have received letters from a lawyer threatening to take them to court. Neither Helen nor Mum would like this to happen to them.