By Ian Holland, Information Officer, Continence Foundation,

A woman is visiting her GP. Although she has been there many times before, she is ill at ease on this occasion. After exchanging a few pleasantries, she steels herself for a moment, then tells him that she is leaking whenever she coughs or lifts her shopping or picks up her grandchildren. She has had the problem for years, she tells him, but it has become much worse during the last few months. The doctor leans back in his chair. “Well,” he says, “You’re 50, you’ve had three children – what do you expect?”

Happily, most GPs are far more enlightened. But if the above scenario is extreme, it is by no means unique. My charity’s Helpline receives calls from distraught or depressed women telling similar tales at least once a month. And how many other people give up hope entirely after equally dismissive reactions from other health care professionals – people we never hear from?

Incontinence is not a subject foremost in the mind of many non-specialists. But there are three reasons why all nurses owe it to their patients to become more knowledgeable and proactive about incontinence: the number of people affected [see box copy]; the effect the condition has on their quality of life; and the reticence they display in presenting with their symptoms.

“A miserable and lonely condition”

That was how one woman described her condition to me. The trouble with today’s society, still, is that incontinence is a taboo subject. People with a bladder or bowel problem often feel stigmatised, ashamed and unable to talk openly about their symptoms. For a combination of these reasons, an estimated 42% of women wait up to 15 years from the onset of their condition before seeking professional help.1 Many women keep it a secret from their husbands. One caller to our Helpline said that whereas some husbands and wives might have a cuddle if they meet up in the kitchen or pass by on the stairs, she just wanted to reject the contact because she felt “dirty in myself.”

Research shows that incontinence can have a dramatic impact on the mental, emotional and physical well?being of those people affected. A recent study2 found that 8% of women and 6.2% of men with clinically significant symptoms said they were ‘a lot of bother’, and 3.2% of women and 2.2% of men with clinically significant symptoms said their incontinence was ‘socially disabling’ and had ‘a lot of impact on social life, relationships, feelings and quality of life’.

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‘A Dragons’

Many non-specialist nurses may never be faced with any but the most overt cases of incontinence and infer – reasonably enough – that the vast majority of their day-to-day patients do not have a problem. But that is an ‘A Dragon’. A friend introduced this bit of market-speak to me a few years ago. The ‘A’ is for ‘assumptions’, and the trouble with them is that, like dragons, they can be dangerous if left to roam free.

Just because patients are reticent about the subject, this does not mean that they do not have a continence problem. Aside from the inhibiting factors of shame and embarrassment already touched upon, many people have ‘A Dragons’ of their own. Some assume that nothing can be done, and never investigate the possibilities open to them. A considerable number of women (and some GPs) think it is an inevitable consequence of childbirth or ageing. There is also a widespread misapprehension that any treatment will involve drastic surgery.

This is a great pity, because the symptoms can always be alleviated – and often cured – with appropriate treatment. A 70-80% cure or improvement rate of suitable cases in primary care has been reported.1 And many treatments exist to deal with bladder and bowel problems. These usually involve conservative measures in the first instance. Examples include pelvic floor exercises, lifestyle changes such as reducing caffeine intake, and techniques to retrain the bladder. However, a variety of medicines and minor surgical procedures are available if other alternatives are not successful.

Why Nobody is Incontinent

Given all the ‘A Dragons’ stopping people from presenting with incontinence, the onus is on all nurses to take the lead in identifying patients with bladder or bowel problems. An excellent way to achieve this is by instigating pro?active questioning about symptoms of atrisk groups, such as school age children, pregnant women, recent mothers, menopausal women, older people and their carers, and people with disabilities. This should entail not only positive ‘screening’, but interventions to raise the subject during unrelated consultations.

Sensitivity is required in these instances and it is best to use words and phrases the patient is comfortable with, while avoiding emotive terms such as incontinence. Many people associate that word with a total loss of control. One caller to our Helpline was indignant that the word had been applied to her. “I’m not incontinent,” she said. “I just leak a little.” People often respond more positively to questions couched in terms of ‘leaking’, ‘damp pants’, or ‘occasional wetness’.

Creating a welcoming environment in a surgery or ward can encourage people to broach the subject. Displaying informational materials, such as posters, or having a small supply of patient leaflets placed where copies can be discreetly picked up, can coax many people into seeking a nurse’s advice. These materials show that the nurse is aware of the condition, and create an ambience in which patients feel more able to raise the issue of their condition.
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In terms of the actions you take after identifying a person with a continence problem, you should have an agreed care pathway for onward referrals. Patients presenting with incontinence should be offered an initial assessment by a suitably trained individual, without which even the simplest treatments should not be started. This assessment is in addition to the usual general patient assessment in respect of mental health, mobility and underlying conditions and might not be conducted at a single consultation. One option is to refer patients with continence problems to a specialist continence service for initial assessment and treatment.

Continence Awareness Week: 11-17 September

Every September the Continence Foundation organises a publicity campaign. The campaign has two goals. First, to raise awareness of the professional help available to anyone who has a continence problem. Second, to combat the prejudice and misunderstanding that surrounds the subject of incontinence by promoting positive media coverage of the condition.

This year, Continence Awareness Week will tackle a wider topic than usual. Instead of focusing on a particular aspect of the condition, such as stress incontinence or overactive bladder syndrome, its theme will be bladder and bowel problems as a whole. The secondary purpose of this campaign will be to encourage people who last investigated treatment and management options a number of years ago - perhaps unsuccessfully - to try again in light of recent advances in these areas.

As usual, we are launching a colourful and informative leaflet for the public during Awareness Week. Called ‘Bladder or Bowel Problems?’, the leaflet explains - in general terms - the most common types of continence problem, and outlines the latest treatments, medicines, surgical options and products available. It tells how to request more detailed information from the Foundation free of charge, and gives the contact details of our Helpline, which is run by continence nurse specialists. Finally, it describes how to get professional help from UK NHS Continence Advisory Services (the Foundation can provide details of all Services via its national database).

Our 1,300+ Campaign Supporters receive a free supply of leaflets in our Campaign Pack. The Pack also contains A4-sized posters giving our Helpline number. In addition, the posters have a label-sized space where appropriate local contact details can be added. Other items in the Pack include self-adhesive ‘toilet stickers’ and some multi-coloured balloons featuring our ‘megaphone bladder’ campaign logo.

Our supporters distribute and display these materials within their own communities (GP surgeries, wards, pharmacies, libraries, shopping centres, etc), so that they come to the attention of members of the public. The Campaign Pack also contains press releases and useful information for supporters who wish to organise local events during Awareness Week, such as information stands or special ‘drop in’ clinics. This is, of course, entirely optional.

More…Please get in touch if you would like to become a Supporter and receive a free Campaign Pack. Write to the Continence Foundation, 307 Hatton Square, 16 Baldwins Gardens, London EC1N 7RJ, or call 0207 404 6875 during office hours, or e-mail aware@continence-foundation.org.uk (including a postal address!).

For more information about Continence Awareness Week, and images of the campaign leaflet and other materials, visit: www.continence-foundation.org.uk/awareness

Note for readers from the Republic: Continence Awareness Week and the campaign materials are geared for the UK in terms of content (e.g. the references to NHS Continence Clinics). Readers interested in promoting continence awareness generally might consider contacting the Continence Promotion Unit, Dr Steevens’ Hospital, Dublin D8, for information and assistance. Tel 00 353 1 635 2775. Fax 00 353 1 635 2779.

References:

1. Stanton S (1996) British Journal of Nursing. Vol. 5, No 7, pp 448-449

2. Perry S et al (2000) An epidemiological study to establish the prevalence of urinary symptoms and felt need in the community: the Leicester MRC Incontinence Study. Journal of Public Health Medicine Vol. 22, No. 3, pp. 427-434.

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[Box Copy]

Prevalence – how big is the problem in Scotland and Ireland?

Urinary Incontinence

A recent study conducted in France, Germany, the UK and Spain1 revealed remarkably consistent prevalence figures for female urinary incontinence in women aged 18 or older: 44%, 41% and 42% respectively for the first three named (Spain had a lower prevalence of 23%, but this was possibly due to cultural factors).

By reference to the 2001 census, which reported the female population of Scotland aged 20 or older to be 2,031,270, a prevalence of 42% equates to 853,133 women. Applying the same percentage to the Northern Ireland census return in 2001 yields a figure of 260,247 women aged 20 or older, while comparison with population data from the Republic of Ireland’s Central Statistics Office for women aged 20 or older in 2002 reveals a figure of 594,249 – giving an all-Ireland total of 854,496.

Male prevalence is less well researched, but in 2000 a study conducted in the UK2 found that 28.5% of men aged 40 or older have clinically significant symptoms of one or more bladder problems. Applying this percentage to the relevant population sources used above, this means that 318,078 men are affected in Scotland, 93,485 in Northern Ireland, and 173,310 in the Republic of Ireland – an all-Ireland total of 266,795.

Faecal Incontinence

Few studies have been made compared to urinary incontinence. However, a report from the Royal College of Physicians3 found that 0.4% of men and women aged from 15-64 were affected by faecal incontinence, rising to 4% in the 65-84 age range and increasing to 15% in men and women aged 85 or older. Again referring to the population sources used above, this is equivalent to 55,313 people in Scotland, 15,858 in Northern Ireland, and at least 32,425 people in the Republic of Ireland (separate population figures for people aged 85 or older not available) – an all-Ireland total of 48,283. It should be noted for all these figures that faecal incontinence is grossly under-reported.

Box Copy References:

1. Hunskaar S et al (2004) Prevalence of Urinary Incontinence in Women in Four European Countries. BJU International. 93, 324-330

2. Perry S et al (2000) An epidemiological study to establish the prevalence of urinary symptoms and felt need in the community: the Leicester MRC Incontinence Study. Journal of Public Health Medicine Vol. 22, No. 3, pp. 427-434.

3. Royal College of Physicians (1995): Incontinence: Causes, Management and Provision of Services. ISBN 1 873240 97X

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