To help spotlight the problem of incontinence, 1,400 medical personnel and other specialists came together in Tampere, Finland, for the 30th conference of the International Continence Society (ICS).

For 20 years, nurse Chris Norton from St. Mark’s Hospital in Harrow, Great Britain, has devoted her time and energy to spreading knowledge about a widespread and handicapping –but largely invisible – health problem. Now it appears that persistence and commitment are paying off. National continence organisations are being formed, international networks are being set up, and suddenly it’s easy to find information about incontinence through the Internet.

"We’ve come a long way. When I started working with this issue there were no journalists or newspapers interested in it," Norton says. "We’ve worked very hard, however, and in some countries we’ve managed to spread our message."

She’s now the Co-Chair of the International Continence Society’s continence promotion committee, which at the ICS conference in Tampere, Finland, in August pulled together representatives from continence organisations all over the world for a network-building workshop. The committee’s global task is to promote education, services and public awareness of incontinence, and to simplify communication and contacts.

Norton sees the job of making incontinence information available as a constant campaign. In some countries incontinence is still either a taboo subject or completely ignored.

"The chief problem in the Third World is injuries sustained during childbirth. Young women – often no more than 13 or 14 years of age – receive terrible injuries when they give birth. That sort of thing hardly ever happens in the industrialised world," says Norton.

Yet, as Norton is aware, incontinence can hardly be called a major health issue in countries where children die from lack of nourishment. For those where health care of any kind is still a luxury, incontinence is a quality of life issue, far down on the medical agenda.

"People in poor countries can’t often afford the medical aids and programmes we’re discussing here in Tampere," says Norton. "They’re a luxury item. It’s only in richer countries with a stable infrastructure where incontinence has the status of a health issue. Even then, it varies."

Australia is one country that takes incontinence seriously. The Australian Government two years ago has committed A$15m to investigate and develop strategies to improve continence identification, awareness, education and management.

"But there are other industrialised nations that don’t do a thing, or even admit that the problem exists," Norton declares.

One of the aims of the international workshop in Tampere was to discuss strategies that can be used locally to generate funds for the organisation’s activities. Representatives of continence organisations from Australia, Holland, Korea, Britain, Hong Kong, New Zealand, Belgium, Denmark and Austria were on hand to present their latest ideas.

"There’s never enough money, and generating funds is always a dilemma, " Norton says. The major source of income for ICS and national organisations at the moment comes from business interests, and that means Norton has to parry questions about the relationship between organisations and sponsors.

"Our interests coincide in many ways," she acknowledges. "If my patients get help, then that creates a potential market for the manufacturer of a diaper or medicine or some other kind of aid. So we both want to create more public awareness regarding this problem. We both want more people to seek help."

She believes it’s important to persuade people living with incontinence to seek professional help and to talk about what sort of help they need. It’s no longer enough for doctors or nurses to offer the medical aids or treatment available, she says. Doctor and patient have to communicate to arrive at the best possible solution.

Training doctors and patients to communicate must be done at the local level, Norton says. Smaller organisations are more successful in analysing needs and devising ways to meet them, she says, and it’s easier in small groups to find people to help spread information.

"Incontinence isn’t a sexy subject. People are reluctant to go to meetings because they think the whole thing sounds difficult and dull," she says. "Our common challenge is to reach the uninterested and those who don’t care."

The organisation’s biggest problem, she says, is still doctors – especially GPs.

"It’s the same everywhere. Apart from the odd exception, general practitioners are totally uninterested. They just don’t want to come to grips with incontinence," she says. "They tell their patients ‘Well, you’re 70, you’ve had six children, what did you expect?’"

But changes may be on the way. Spurred by the public and the media, government aid is becoming more common, both in practical and in financial terms. It’s getting easier to start local organisations.

Norton believes that the number of people with incontinence is likely to increase, at least in the Western world, as populations age. Incontinence is more prevalent among the elderly. So the number of people seeking medical care for the condition will also rise.

"That’s the next challenge," she says. "Market-conscious health care consumers can formulate their own needs and are used to making their own choices. But before they can do that they have to know what options exist, and it’s our job to give them that information."

She says the continence organisations of the future will have to work with patients, whether that means planning new services, medical aids or education, or even helping patient organisations or advising them on their Web sites.

"We have to activate the patients and encourage them to talk about their needs, instead of passively accepting help from us," Norton says.

TEXT GABOR HONT PHOTO MARTTI KAINULAINEN/LEHTIKUVA