I rise to speak on the National Health Amendment (Decisions under the Continence Aids Payment Scheme) Bill 2021. This provides a mechanism for internal review of decisions of the secretary of the Department of Health under the CAPS instrument, and for independent merits review by the AAT. I want to acknowledge the contributions that have been made in the House this evening on this bill.
The member for Boothby just then made the very real connection between mental health and incontinence. We know that a fear of incontinence raises anxiety and great uncertainty for people, which is directly connected to their mental wellbeing. I want to thank the member for Macarthur, who so beautifully humanised this bill.
It’s not a glamorous bill. It won’t make a headline. Probably no-one outside this chamber but the people who really rely on these kinds of aids will even know about this. For all the work that we do in this place, it’s actually bills like this that make me feel better about being an MP, to be honest.
One in four Australians experience incontinence. It’s much, much more common than people think. More than 4.8 million Australians have a bladder or a bowel problem. Incontinence can impact just about anybody: women, men, children. It impacts people from all walks of life and at all stages, as we’ve heard this evening: young and old, expectant and new mothers, and the elderly.
Sadly, though, over 70 per cent of people with urinary leakage never seek advice or treatment for their problem. They’re embarrassed and they put up with it as best they can. In my long career in health care prior to coming here, I stumbled upon this with people I met coming into hospital or into health care for other reasons—their embarrassment when they had to undress and it was revealed that they had homemade continence products because they’d never sought any help.
Incontinence impacts people’s social and emotional wellbeing and their ability to engage with their community. Some people with the condition haven’t gone out for years. They can’t go grocery shopping. They’ve relied on family members to support them with their essentials. There are plenty of people who never play sport or who won’t go to a concert for fear that they can’t sit through the length of the concert. There are people who don’t go out because they know that there’s no public toilet anywhere near where they live.
Again, I was pleased to hear the member for Boothby talk about the app that helps people find a public toilet. It’s such a basic thing, but so important if you need it. There is so much stigma still associated with incontinence and, sadly, it prevents people from seeking help for what we know is a really commonplace problem that actually can, in many cases, be managed and, in some cases, be completely fixed.
Under the CAPS, an annual or six-monthly payment is available to people over the age of five who suffer from permanent and severe incontinence caused by particular kinds of conditions specified in the CAPS instrument, and who meet other eligibility criteria. These payments help offset the costs of purchasing incontinence products from a supplier of choice. Again, anyone listening to the member for Macarthur might have been very surprised at how expensive these continence pads are. Introducing a review mechanism is a really sensible change, and highly commendable and wholly commendable, and I’m grateful to the government for doing this.
There should always be accountability when a government bureaucrat makes a decision about a matter which affects a person’s rights and entitlements, and, in this case, such a basic right and entitlement. There should be the right to challenge it on the grounds that perhaps it’s wrong.
This government, by its own admission, said that CAPS participants are unlikely to utilise the review pathway of Services Australia, who administers the program and often works with CAPS applicants to resolve issues. Further, the Continence Foundation of Australia points out that participants are really unlikely to bother going through a bureaucratic process when the annual maximum payment for these products is only $635.10. Many of these people say it’s just not worth the time and the fuss.
While one in four Australians experience incontinence, only about 135,000 people are actually eligible for this CAP Scheme. Some are deemed ineligible for CAPS because their health professional hasn’t described the condition in the precise way required by the scheme. I really support calls for the decision-making around eligibility for the scheme to be more transparent. Perhaps there needs to be some education of our GP workforce around the precise definition so that they can describe it in the way that is required.
We need transparency, with an annual publication of statistics around the use of the scheme, including waiting time for a decision and the number of new applicants. We need to know this because if we know this we get a better understanding about what’s happening in our public health system and perhaps where there’s greater prevalence than we ever thought. We need transparency around the total number of ineligible new applicants or participants and the grounds upon which they’re denied access. That’s really important.
As I’ve said, continence care is expensive. The Continence Foundation of Australia says it receives over 6,000 calls to the National Continence Helpline every year from callers seeking financial assistance and trying to get help with the cost of continence products. Callers regularly report financial stress, particularly in that period leading up to the annual payment in July, because the CAPS provides for less than a quarter to a third of their annual expenditure on continence aids. It’s estimated that $1,698 is the expense for someone who uses around 18 incontinence pads per week, and we know that there are some people who require many more than that. Incontinence is not only a huge personal cost but also a huge cost to the economy. A 2010 Deloitte report estimated the cost of incontinence to the nation at around $67 billion, and that includes money spent on health systems, productivity loss in the workplace and in employment, aged care and carer costs.
I really support the calls from the Continence Foundation of Australia to review the CAP Scheme as a matter of urgency to address the following things:
(1) the adequacy of the payment in meeting the hygiene and dignity requirements of Australians living with permanent and severe incontinence;
(2) the adequacy of the payment in ensuring Australians living with permanent and severe incontinence do not experience financial stress or hardship due to expenditure on continence aids;
(3) establishing a mechanism for regular review of the schedule of eligible conditions causing permanent and severe incontinence;
(4) review of the policy rationale for the difference in eligibility for CAPS between neurological conditions and other health conditions causing permanent and severe incontinence; and
(5) review of the pension card requirements for CAPS applicants with non-neurological conditions, including comparison to other schemes, such as the Stoma Appliance Scheme, which provides free stoma appliances and products to nearly 50,000 Australians—quite a big difference.
I’d also like to turn the House’s attention to the Royal Commission into Aged Care Quality and Safety findings. The aged-care royal commission looked into the prevalence and treatment of incontinence in residential aged-care homes. It heard that 75 to 81 per cent of all the people in residential aged-care facilities live with incontinence—that’s a very big number. The royal commission also reported that it heard that staff members don’t have the time needed to assist residents to go to the toilet in a timely manner, and too often there’s actually routine use of incontinence pads to manage workload—again, when we think about people’s dignity, a fundamental dignity is to be able to go to the toilet.
I’ve worked in aged care and I’ve been the director of an aged-care facility, so something I’m very aware of is managing workload. Many of our elderly people, of course, are frail. It’s difficult for them to walk. They need assistance to go to the toilet, so those findings from the royal commission are really, really worrying. Again, it speaks to the urgency that we have as a nation to get cracking on the findings of the royal commission and make sure that we’ve got the workforce in our residential aged care to provide the most fundamental element of human dignity: going to the toilet.
We need our aged-care workforce not only to have the numbers to provide that kind of care but also to be adequately trained so that they can respond to the needs of people with incontinence, so that they can provide that dignity and respect and so that our elderly have the best possible quality of life that they can. The 2021-22 budget included an investment to support an additional 33,800 training places for personal care workers to attain a certificate III in individual support in ageing, and it’s crucial that continence care is part of any training and education.
The Continence Foundation of Australia has recommended that incontinence is recognised as requiring both basic and specialised care and support, and is incorporated into the foundational courses for aged-care workers. This needs to be back on the curriculum, but it’s fallen off. This is so fundamental. It’s fundamental so that both the current and the next generation of care workers are suitably qualified and trained in safe and effective continence care and incontinence management. Continence care includes things like nutrition and hydration. It’s about recognising signs and symptoms of bladder infection. It’s about recognising signs and symptoms of muscular dysfunction. There are many elements to this; it’s not straightforward.
Until recently, Australian registered nurses seeking to specialise as nurse continence specialists had the option of undertaking one of two post-graduate courses. Sadly, these graduate courses are no longer available, and there’s little scope for registered nurses to gain the necessary specialised knowledge required to become a competent nurse continence specialist. The Continence Foundation of Australia is calling on the government to ensure that these courses are placed back on the national curriculum, and I join the foundation in that call. It is projected that, by 2030, 6.2 million Australians will be living with incontinence. Despite the growing prevalence, there’s currently no funding commitment or action plan from the federal government beyond June 2021.
I said tonight—and I mean it—that the government are doing good work in this space, but they need to fix that. They need to make sure that there’s ongoing funding.
I’d like to recognise some of the champions out there who are working to provide fantastic support for people who suffer from incontinence. Continence nurses are key to this, as are physiotherapists. They enter people’s lives with compassion and without judgement. They’re people like the member for Macarthur, who shows such humanity. They talk about an issue that, for many people, they will be discussing with them for the very first time. They listen carefully, they provide advice and they go on that journey with these people to make sure that these people are getting continence care that fits with their lifestyle. It takes a pretty special person to do this. I know a few of them: Nicci Malcolm, at Northeast Health in Wangaratta; Kath Thomas, who’s a physio and has been working in this area for a long time; Deborah Gregory is also a nurse who’s been working in this area for decades; and Associate Professor Helena Frawley, a specialist academic who’s looked at this area for many years. She has been a leader in research and the training of many physiotherapists.
I also want to recognise that there are some fantastic programs in my electorate that are doing really good work on incontinence awareness. Gateway Health ran a bladder health education program in Wangaratta and Benalla earlier this year. They educated participants, who learnt about how bladders and bowels actually work and how to keep your bladder and bowel healthy with the skills to manage urinary incontinence.
Northeast Health in Wangaratta announced during World Continence Week in June that it’s supporting the BINS4Blokes initiatives, which promotes the installation of incontinence bins in male public toilet facilities. At Northeast Health in Wangaratta, they will provide bins for blokes in male toilets right throughout the health service—good on them.
Gateway Health’s Below The Belt program for local men is also a terrific program. It looks after men’s incontinence and chronic prostate health. Many people don’t realise that men who’ve undergone a radical prostatectomy very often suffer from incontinence for some time after that surgery.
The Below The Belt bladder health program provides men in the community with an opportunity to explore a variety of treatment options to suit their individual needs and helps them to develop a plan that’s really going to make a difference to their lifestyle.
At Albury Wodonga Health, they’re absolutely in this space as well, with their continence nurse advisory service, which has outreach to many small rural towns as well. In conclusion, as I said at the beginning, this is an important bill. It’s not a glamorous bill, but it’s an important bill, and it brings to this chamber the voices of many people who are never heard. I thank the government for this work and I commend the members who’ve had something to say on this bill. I commend the bill to the House.