BILLS (Second Reading): National Health Amendment (Decisions Under the Continence Aids Payment Scheme) Bill 2021

01 October 2021

I rise to speak on the National Health Amendment (Decisions under the Continence Aids Payment Scheme) Bill 2021. Labor supports this bill. It makes important changes to the Continent Aids Payment Scheme, otherwise known as CAPS.

CAPS is an annual or six-monthly payment available to people who suffer from permanent and severe incontinence. The changes made by this bill will allow people to apply for an internal review or go to the AAT for a decision made by the department secretary with respect to their representatives or payments made under the scheme, because continence aids are not cheap. They are expensive, yet they are a vitally important product to those who need it. For many, the CAPS goes a great way to making people's lives vastly better, so we support this bill.

For the vast majority of Australians, incontinence is not a subject they discuss on a regular basis. It often doesn't make headlines or feature at the barbecue banter or the water cooler chats, and rarely does it make its way to the chamber. But, if you look at the statistics, chances are at least one person around the barbecue or the water cooler might just be experiencing incontinence of some sort—as might several people right here in this chamber now. You see, incontinence affects one in four adult Australians.

Men do suffer with it, but mostly it affects women. Urinary incontinence affects up to 10 per cent of Australian men and 38 per cent of Australian women. Eighty per cent of those with urinary incontinence in the community are women. And it's not only the aged that have this issue: over half of women living in the community with urinary incontinence are aged under 50 years. Women who have had two or more vaginal deliveries are at higher risk of developing urinary incontinence. In fact, injury during childbirth is the most common cause of the damage leading to stress incontinence.

Although women are more predisposed to this condition, men are also commonly affected. Generally, males who have had their prostate removed or resectioned are more likely to suffer from incontinence, and another population that has that higher incidence is male and female athletes. This includes both endurance athletes and powerlifters. However, this condition can be tricky, because it can result from many different stresses and causes, and of course it's important to note that incontinence can be both urinary and/or faecal. Damage to the nerves, muscle and connective tissue of the pelvic floor can be a cause of stress incontinence, which happens when physical movement or activity, such as simply coughing, sneezing, running or lifting heavy objects, happens. These things put stress on your bladder.

Other causes can include weakness or tightness in the pelvic floor muscles, lower back problems, pain, excessive weight, nerve injuries and more serious pathology. Additionally, surgery in the abdominal area can lead to incontinence. Other risk factors commonly linked with it include pregnancy, younger women who have had children, menopause, urinary tract infections, constipation, reduced mobility, neurological and musculoskeletal conditions, and health conditions such as diabetes, stroke, heart conditions, respiratory conditions and prostate problems, and some medications. Of course, many Australians with neurological, genetic and other disabilities require aids. Sadly, a risk factor for faecal incontinence is urinary incontinence, so one follows the other.

I mention all of this, uncomfortable as it may be to hear, because, as you can see, incontinence is not some vague mystery illness or rare disease. It is as common as all get-out and it's all around and amongst us, so it's important to talk about it in places like this, outing it as an everyday experience that deserves attention. It's important to show that we are informed, that we understand and that we care. It is an issue that is too often hidden, and people are often reluctant to come forward and get treatment. We know that 65 per cent of women and 30 per cent of men sitting in a GP waiting room report some type of incontinence, yet only 31 of these people will seek help. We also know that 70 per cent of people with urinary leakage do not seek advice or treatment, and this is especially true for men. For example, urge incontinence, a strong and sudden need to urinate, occurs commonly with prostate disease. It has a low incidence in young men and increases as men age. As it's a sign of potential cancer, it's extremely worrying that people don't feel they can report it or seek treatment.

Research tells us that many people with incontinence don't seek help. Depending on the individual's personal beliefs and feelings about the condition, they might not be bothered by it or try to hide it or deny it or not want to talk about it. It can cause anxiety, frustration, anger and even grief. There are feelings of embarrassment and shame, and often an overwhelming sense of loss and grief because of the inability to control this bodily function. Understandably, it comes with low self-esteem or confidence. People feel lonely and isolated. There can be a loss of desire for intimacy and an impact on sexual activity. The impact on mental health is immeasurable. As I said, this is far from a condition limited to the elderly, as people imagine. So many young people are affected. For example, 44 per cent of women living in the community with faecal incontinence are under 50 years of age—astonishing.

But, with respect to older Australians, the outcomes are stark. It's a major risk factor for admission into residential aged care. In fact, faecal incontinence is one of the three major reasons, along with deceased mobility and dementia, for admittance to residential aged care. Another study found that 81 per cent of women and 75 per cent of men in permanent residential aged care had some degree of incontinence that was not self-managed. We were shocked by some evidence given to the royal commission into aged care on the prevalence and lack of management of incontinence in aged-care facilities. So often the smell of urine permeates from the nursing homes where the problem is not well managed. The commission heard that some management practices actually lead to residents becoming incontinent. I know that such practices can be related to understaffing, where carers and nurses simply don't have the time to toilet residents frequently. As a nurse, I remember good nursing practice is toileting a resident every two hours, and what we know now about current staffing issues in aged care is that that would be impossible, so incontinence pads are used instead. Some poor residents sit in wet pads and beds for long periods of time. Consequently, they lose bladder tone and they become prone to urinary tract infections, which again contribute to incontinence. It is a vicious circle.

Carers and nurses in residential aged care have reported to me that incontinence pads can be rationed. They are locked away. They're not changed as often as they should be, and this is shameful and avoidable. Any review of funding for aged care should of course ensure enough staffing to properly attend to hygiene needs, including toileting. But also residential aged-care facilities should be held to account for poor continence practices. I believe the Continence Foundation of Australia has commissioned the National Ageing Research Institute to develop and test a best practice model for continence care in residential aged care. That's great; I welcome that. But will there be enough staff to implement their recommendations? The royal commission recommended an increase in care minutes and a registered nurse on shift in every nursing home. Yet the Morrison government has only accepted part of that recommendation; it's only gone halfway. Those extra minutes of care, those extra staff, could mean residents sitting in soiled incontinence pads and soiled beds for less time. It might even mean more staff to properly toilet their residents so that incontinence pads are not soiled or needed at all.

Worryingly, recent data has shown we are facing a critical aged-care workforce shortfall of more than 110,000 workers in the next decade. CEDA chief economist Jarrod Ball said:

We will need at least 17,000 more direct aged-care workers each year in the next decade just to meet basic standards of care.

The National Centre for Vocational Education Research has revealed that since the government came to office there are over 4,000 fewer health and welfare support workers and over 3,000 fewer aged- and disability carers. This is a cut of more than 7,000 workers to those coming through the skilled workforce.

The workers in aged care and disability are exhausted, overstretched and under-resourced to the limit, and they lack the resources they need to take care of older Australians and people with disability. I wonder if the minister for aged care understands this. I wonder if he gets the real-life implications of an acute shortage of workers and of aged-care workers not having enough time to properly care for their charges. Imagine how you would feel as a carer, knowing an elderly man has soiled his incontinence pad and you can't get to him to change it because you're tending to dozens of other residents at the same time. I ask the minister to imagine if that elderly man was himself. He isn't exactly a young man—not that there's anything wrong with that; I'm not being ageist here at all! But he isn't all that young and his elderly years are indeed ahead of him, as they are for all of us, me included. I wonder how he would feel knowing he may find himself in a nursing home in need of incontinence pads. I hope that is a sobering thought. Maybe incontinence and this subject isn't something he turns to but something he turns his nose up at. Better management of incontinence and indeed maintenance of continence where possible means prioritising.

It takes specialist care and knowledge to care for an incontinent person. As a nurse, I saw close-up the role of specialist continence nurses and the important work they do in helping people deal with a life-changing development. Their role is so intimate, so personal and vitally important. They deal with so many questions, about coping at home, managing while at work, dealing with embarrassment and dealing with intimate relationships, that impact on personal lives. Continence care nurses are specially trained nurses with advanced practice skills in continence care. They are experts in its management. They are skilled to help people from different cultural backgrounds at different stages of their life across a multitude of communities in a range of settings. A nurse continence specialist provides services as an integral part of the healthcare team along with other allied health professionals such as physiotherapists and pharmacists. Their roles need to be fully recognised and resourced to help people with incontinence have the best lives they can.

Our experts spend a lot of time working with and helping carers of people with incontinence. Carers, I must add, can feel overwhelmed with the stress arising from life and relationship changes. There's the huge financial burden of continence care. There's increased time and costs spent on cleaning clothes and bedding. They may find their behaviours in their loved ones difficult to understand and accept, making it harder for them to help the person achieve the best outcomes for each of them. For carers, it's especially important to recognise their own changing emotions and feelings—especially carers for people with disability, who may be a child, a sibling, a partner or another relative. It can be exhausting and straining.

That brings me to mental health care needs for someone with incontinence and their carers. As I've mentioned, the impacts of incontinence on people's lives can lead to depression, poor self-image and even suicide. People with incontinence must be able to access affordable mental health care. So, while we support this bill, and it is an important bill for all of the reasons I've mentioned, it's imperative that the government understand the broader impacts of incontinence on the community and their failings, especially when it comes to aged care, disability care and mental health care. I'd just like to finish by adding that, if anyone by chance is listening to this speech and thinks they need assistance, you can find out where your local nurse continence specialist is by calling the National Continence Helpline—it's a free call—on 1800330066.