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Global Forum on Incontinence: breaking the silence

The UK prides itself on being a "liberal" society. We remain unfazed by open confessions on Facebook, grim details of celebrity lives and the antics of Big Brother. Why then, do nurses and patients alike feel uncomfortable discussing the isolating condition that is incontinence?

Nadine Woogara
BSc(Hons) PgDip
Nursing in Practice

It's just not something that enters conversation. If it does, incontinence is usually spoken of in the same sentence as old age, vagrancy or infirmity. Our "emancipated" press is twice as likely to write an article discussing sexually transmitted infections than a debate on incontinence.
"I think we have come some way in the past 10-20 years in reducing the social taboo of incontinence," said Professor Ian Milsom, professor of obstetrics and gynaecology at the University of Gothenburg, Sweden.
"Products are advertised on television and the internet and this obviously helps to normalise this condition. However, I am afraid we are still some way off treating an issue that will, after all, affect many of us in some way or another in our lifetime, as normal a healthcare problem as asthma, raised cholesterol or depression."
Hoping to illustrate how the stigma of incontinence prevents patients finding support and resolution, 250 delegates gathered at the second Global Forum on Incontinence in Nice this year to discuss the condition's future.

Is incontinence a big deal?
Incontinence is a global problem. It affects men and women, young and old. More than just an embarrassing secret, incontinence can damage emotional wellbeing. Someone with incontinence may find even the simplest tasks outside the safety of their own home a challenge. Linked with depression, incontinence may also cause unease and stress in social situations with strangers.
Incontinence can also impinge on career choices. An employee with incontinence may not want to reveal their condition and instead may have to privately consider, is there quick access to toilet facilities? Will this job allow me regular toilet breaks? Will people notice and could this affect my career progression? Not every job is as accommodating as someone with incontinence needs it to be.

Speak easy
What makes incontinence worse for the individual is society's unwillingness to talk about it. As discussion of incontinence is limited, so is society's awareness of its impact, and greater the taboo grows.
An SCA internet-based Incontinence Taboo Study, approved by TENA, of 100 GPs and more than 1,000 members of the general public across France, The Netherlands and the UK found that speaking about incontinence was thought to be as uncomfortable as talking about haemorrhoids or erectile dysfunction.1 Women with incontinence felt more uncomfortable speaking about the condition than men, and younger women were more embarrassed than older. Professor Milsom believes women may feel greater unease as female incontinence often occurs at a younger age.

Avoiding treatment
The taboo nature of incontinence can pose a serious barrier to seeking care. Nearly two-thirds of patients are symptomatic for two years before seeking treatment for incontinence. Patients will go to extreme lengths to avoid contact with a health professional, many self-managing by voiding their bladders frequently, reducing their fluid intake and wearing absorbent products.
A lack of knowledge of the condition is also to blame with patients believing incontinence "not to be serious enough to need a medical solution." Others see urinary incontinence as a normal part of aging or childbirth.
But should it be the nurses' role to broach the sensitive issue of incontinence and tackle these misconceptions head on? Knowing that patients are often shy of the condition, the nursing profession cannot rely on patients to independently seek help. Worryingly, the SCA Incontinence Taboo Study also found that patients were more likely than nurses to bring up the issue of incontinence.(1) Every couple of months, some 52% of patients in the UK raise the issue for the first time compared with only 37% of nurses. Looking at interactions week by week, the figures were more comparable with 35% of patients speaking about incontinence compared with 29% of nurses.
Although happy to discuss incontinence among colleagues, it seems most health staff anticipate discomfort when debating the issue with patients. "GPs often overestimate a patient's discomfort in talking about the issue," says Professor Milsom. "When what the patient actually wants is an open discussion and good advice."

Back to school
Is the nursing profession failing patients with incontinence? Does the medical curriculum need to be revamped? Only 6% of UK primary care professionals said they had received any formal education or training on urinary incontinence in the past six months. Some 23% of health staff said they had last received incontinence training between two and five years ago.(1) But a worrying 16% said they had only ever received incontinence training as an undergraduate.
Professor Milsom adds that incontinence must first be accepted as a genuine problem by the nursing profession before it can gain a serious position in medical training or even register as a health condition in need of consideration. Perhaps, Milsom added, nurses should be given incentives such as quality outcome framework (QOF) points or individual incontinence targets to add on top of incontinence training.

Managing incontinence
Once a patient does present with incontinence, either after personal struggle or professional suggestion, nurses can choose between various care pathways. But even these are hard to talk about. The survey found that nurses were most comfortable talking about drugs and medication, followed closely by pelvic floor exercise. But found it difficult to broach toilet training and surgery.(1)
It seems that taboo stands in the way of effective discussion and practical intervention. The conference concluded that what patients really want is an open frank diagnosis, education, clear therapy choices and a realistic expectation of treatment outcome.

Preventing incontinence
Diane Newman, codirector of the Penn Centre for Continence and Pelvic Health in the USA, believes it is possible to not only manage but prevent incontinence. Prevention is the way forward, she says, and health professionals should not wait until a patient is elderly or has become pregnant, before action is taken.
In primary prevention, healthcare staff work to remove the causes of incontinence. In secondary prevention they detect signs at an early stage when there are few or no symptoms and treat the illness to prevent it from progressing. Finally, in tertiary prevention, staff step in and intervene.
But to exact any sort of prevention - staff must first identify the population at risk and the factors that come hand-in-hand with the condition. However, many patients are so ashamed of the taboo associated with incontinence that they shy away from reporting their symptoms. With little knowledge of the symptoms that pre-empt incontinence, healthcare staff can struggle to identify those at risk.
Public awareness of the condition must increase, says Diane, with education reaching even into primary schools - perhaps through the work of an "incontinence nurse educator" so that it does not become a significant taboo in adulthood.
In the future, it was suggested that hospitals could carry out genetic tests in women to identify defective connective tissue. If the gene for defective tissue was found, then these women could be put forward for caesarean sections in order to avoid incontinence and prolapse. Why not even use genetic engineering to alter connective tissue?

If action is not taken to tackle the incontinence taboo now, it will only get worse. By 2025 it is estimated that up to 29 million people will have urinary incontinence in Europe, and one in five elderly people will have it by 2050. "Incontinence not only affects the individual but it also affects healthcare services," said Professor Milsom. "How will the healthcare system accommodate the rise in incontinence patients?"



Global Forum on Incontinence

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"It's true. I take oxybutinin and was seen for a while at a  continence clinic at the local hospital. However, only the other day my husband was on the phone recently renewing travel insurance, and was asked what does she take the medication for? He started to say  "incon.." and I rushed in with "detrusser instability" and tore strips off him for using THAT word! We forget just how common it is and that maybe is something we should be communicating to our patients. You are not alone!" - Elisabeth Berleigh, Leicester