Voldemort Disease

The condition, affecting millions, that no-one likes talking about.

By Samantha Pillay

I will reveal the condition I am referring to, in time. For now, ‘it shall not be named’, as such is the stigma, you will be unlikely to read on.

I will discuss why doctors, media, and patients avoid this topic. Firstly, let’s look the prevalence; so high, its absence from mainstream media is astounding.

Ubiquitous

The Australian Government Institute of Health and Welfare noticeably omits this condition from their list of the 10 major chronic conditions affecting Australians.

If included, it would be No 1!

The UK and USA have recorded similar data.

Let’s take a look at what’s on the government’s 10 major chronic conditions list for Australians:

1. Common Mental Disorder in the previous 12 months; estimated 1 in 5, 20% population

2. Back Problems; 1 in 6 (4 million) in 2017–18

3. Arthritis; 1 in 7, 15% population

4. Asthma; 1 in 9 (2.7 million), 11% population

5. Chronic Kidney Disease; 1.7 million, 10% adults

6. Heart or Vascular Disease; 1.2 million adults, 5.6%

7. Diabetes; 1.2 million, 4.9%

8. Chronic Respiratory Conditions; 1 in 20 aged 45 years and over

9. New Cancers; 145,000 estimated new diagnosis in 2020

10. Osteoporosis; 29% women over 75 years (2017–18)

A comprehensive evaluation, by Deloitte Access Economics, found in 2010 the condition, ‘that will not yet be named’, affected:

4.2 million Australians, including 55% of woman aged 50–59 years.
Predicted to increase to 24% population over 15 years (5.6 million), by 2030.

Further studies have found prevalence rates of:

38% of Australians in 2017 had experienced symptoms.

1 in 3 women who have had a child.

81% women in residential aged care.

The Big Reveal: Voldemort Disease is Urinary Incontinence

Supposing you don’t already experience incontinence; based on the information I am about to share with you, there is a good chance you will want to stop reading now; to avoid facing a condition already affecting people you know, and likely to affect you one day.

Firstly, I would like to address why, as a taxpayer, using healthcare, you should be concerned about incontinence, even if you are not affected?

The Deloitte Access Economics report, calculated in 2010, the total annual direct and indirect costs associated with incontinence was $42.9 billion, approximately $9,014 per person, per year. The Australian Institute of Health and Welfare estimated the total health care expenditure in 2008–09 on incontinence in Australia, was $1.6 billion.

The economic impact of incontinence includes:

Health and aged care costs.
The burden on the health care workforce and resources.
Productivity costs due to reduced employment resulting in loss of earnings and taxes.

Incontinence can cause;

Reduced capacity for work,
Lowered self-esteem,
Depression,
Social isolation,
Loss of dignity,
Loss of independence,
Reduced exercise and obesity,
Reduced ability to travel,
Admission to aged care,
Increased risk of falls,
Reduced social activities,
Restricted fluid intake,
Impact on relationships and sexual health.

What are the two main barriers to seeking help?

1. The Stigma:

Over the years, we have seen celebrities and people of influence tell their stories of mental illness, breast cancers, suicide, and other previously sensitive areas. There is a notable void of celebrity personal stories and ambassadors, considering the prevalence of urinary incontinence. A national survey found 62% of Australians who have experienced incontinence have not contacted a health professional.

As a urologist specializing in urinary incontinence surgery for almost 20 years, I have treated over ten thousand patients and listened to their stories. Although I am unable to share their individual stories, they should not suffer in silence. Patients do not want to speak up, but society must change their perceptions. I feel an enormous responsibility to be their collective voice.

Many patients hide their condition. For example, they;

Do not tell their immediate family or partners.
Buy incontinence pads in secret and hide them in their home.
Do not tell anyone they are seeking treatment.
Deny experiencing incontinence when asked directly by their doctor or health provider.
Do not tell family or partners the truth about their operation or what condition they are seeking treatment for.

Incontinence is a highly emotional condition. People may even talk openly or joke about it in general terms but then refrain from talking about how it impacts them emotionally and their lives.

2. Access to health care:

There are great leaders and health care workers specializing in urinary incontinence, making advances in research, treatments and education. Yet, much of this only reaches those health workers specializing in this field.

Progress is slow because there is a missing piece to the puzzle. The information is not reaching; the community at large, the population who don’t yet experience incontinence, those unaware of its impact, mainstream media, policymakers and general health professionals not working specifically in this area.

So overarching is our aversion to this topic; when recently publishing a cookbook, I was advised to remove from the front cover ‘urologist’ after my name. It was thought it might be too confronting and put off the target audience.

What do we do?

End the stigma.
Engage the community.
Raise concern and education through mainstream media.
Educate primary health and allied health care providers.
Provide the attention urinary incontinence deserves to influence governments and allocate appropriate resources.

When the individual voices are silent, everyone can choose to ignore the problem;

Common themes I have been told over and over again include;

My children, family or friends, tease me about how often I go to the toilet.
I am embarrassed at work or on a plane about how often I visit the bathroom, or how long I take.
The toilet facilities at work are too few, too far away, or too dirty for me to manage my problem.
My dog now goes and sits by the toilet when it hears me coming home, instead of waiting by the door.
I won’t travel or visit friends because I have to pack so many incontinence pads or because I have to get up too often at night.
My partner doesn’t notice I leak urine during intercourse; he doesn’t realize the dampness is urine.
I’ve quit my job, university, school because of my incontinence.
My friends have commented I smell of urine.
I am worried my friends have noticed I smell of urine but don’t say anything.
I can’t exercise anymore; I can’t even go for a walk.
My clothes smell even when I wash them.
I don’t go out anymore.
I avoid drinking anything if I am leaving the house.
I can’t afford the incontinence pads.

If you applied the incontinence statistics to another condition, consider the following scenario;

If primary health care providers were not trained to manage hypertension, requiring specialist care by cardiologists and other specialized health care providers, there would not be enough skilled workers. It would be unnecessarily expensive to rely on these specialists and inefficient utilization of resources when the generalist could deliver much of the care.

The number of specialist nurses, physical therapists (physiotherapists), urologists and other health care providers are inadequate to address the problem.

In medical school, little attention is given to incontinence, with a far greater focus on less common conditions. The low priority given to incontinence follows through general practice training and even specialist surgical training in urology.

When I decided to sub-specialize in incontinence surgery in 2001, it was ten years before the Deloitte Access Economics report. There was so little teaching in our training on incontinence that further training after completing my surgical training was required to practice in this area. I had no idea that what I had seen was the tip of the iceberg. I identified a need for sub-specialists in urinary incontinence. It was such a small component of the curriculum I falsely believed that maybe I could work part-time and not be as overworked as my colleagues! Little did I know of the tsunami that would ensue.

Although many primary health care providers are well trained in treating incontinence, many have not had adequate training opportunities. Common themes I hear from my patients regarding their interaction with health care providers are;

My doctor ignored me when I mentioned my incontinence.
My doctor didn’t examine me.

They were told:

It was normal.
It was expected for someone of my age.
There wasn’t any treatment.
You need to learn to live with it.
The treatments aren’t effective and should be avoided.

I have devoted years to educating primary health care providers and colleagues, delivering over 120 lectures, workshops and presentations. To turn the tides, I have realized that your help is required.

Society’s perceptions need to change for appropriate research, education, funding, access to care, and proper resource allocation.

I thank all my past and future patients for the privilege bestowed upon me in the opportunity to help them. I hope their suffering in silence is not in vain if I can represent their collective voice. As individuals, they may feel weak but united; they are strong.

Your challenge is to talk about incontinence, how it impacts you, the people you know, and the world you live in.