Time to break the continence taboo

Millions of people in the UK experience continence problems that can have a devastating effect on quality of life. Nurse experts welcome new care guidance from NHS England but say that healthcare staff need to do more to raise patient awareness of available treatment options.

Many people are ashamed of bladder problems and don’t realise that effective treatments exist. Well-informed nurses can change their lives

More than 14 million people in the UK have bladder problems, according to NHS England, yet many are too embarrassed to seek help and suffer in silence.

‘It’s shocking just how many people are affected,’ says RCN professional lead for long-term conditions and end of life care Amanda Cheesley. ‘The effects on people’s lives can be devastating. Some just won’t go out because they worry that they won’t be able to find a loo in time, that they smell or may leak. They are concerned that others will notice.’

While there is a public perception that incontinence is largely related to older age, that’s just not true, says Ms Cheesley. ‘There is a wide spectrum of people who are affected. For example, there are lots of women [with continence issues] who have had children – and a surprising number of elite athletes too.’

The chief medical officer’s annual report, published in December, emphasised the need to break the taboo around incontinence as part of its overall focus on improving women’s health. Urinary and faecal incontinence affects more than five million women in the UK, says the report, with half of those aged between 18 and 65 saying they are moderately or greatly bothered by it.

Last November, NHS England published new guidance on continence care targeted at commissioners, health and social care providers and staff, alongside information for the public (tinyurl.com/p5oldkp).Aimed at improving the care of children and adults with continence issues, it brings together the most up-to-date evidence-based resources and research to support best practice. The comprehensive framework includes assessment, diagnosis and treatment to recovery, where possible.

‘This is definitely to be welcomed. It’s time we had some robust guidance,’ Ms Cheesley says.

Specialist continence nurse Lee O’Hara agrees. ‘Any document that raises awareness of continence, bladder and bowel issues is very welcome,’ says Ms O’Hara, who is clinical lead at the adult bladder and bowel care service, Hertfordshire Community NHS Trust. ‘Its main focus of doing something about the problems patients experience, rather than providing continence products, such as pads, is to be applauded.’

Among the important points the guidance highlights is developing and educating healthcare professionals to understand more about continence issues. To improve the knowledge of nursing staff, the RCN will be developing new resources that are likely to be available later this year.


‘It’s every nurse’s responsibility to understand continence enough to be able to talk about it and carry out an initial assessment,’ says Ms Cheesley. This should look at excluding anything that may be affecting continence, such as infections, constipation, prostate problems, pelvic organ prolapse and the effects of the menopause and obesity. ‘It may even be someone’s mobility affecting their ability to get to the toilet in time,’ she adds.

Nurses should also be able to recommend dietary advice, bladder retraining and pelvic floor exercises, potentially alleviating the need for referral to specialist services. ‘For many patients, it’s about raising awareness that something can be done and the issue may be easy to resolve,’ says Ms Cheesley. For example, teaching women to do pelvic floor exercises may have a dramatic effect. ‘Just a six-week programme can be revelatory in how much difference it can make.’

Start a conversation

Nurses need to encourage their patients to disclose any problems they are experiencing. ‘There is huge reticence, with many patients feeling that somehow it’s their fault,’ says Ms Cheesley. ‘We need to get over the embarrassment about asking and use plain language that people understand.’

She suggests opening the conversation by asking whether the person ever worries about making it to the toilet in time. ‘If they do, then you can begin to tease out why it’s happening, how it affects their life and what they’re doing about it at the moment,’ says Ms Cheesley.

‘It is every nurse’s responsibility to understand continence’

– Amanda Cheesley

‘A lot of us shy away from asking,’ says Ms O’Hara. ‘It’s not our priority, or we don’t know what to do if they say yes.’

For those patients who need specialist help, services may be overstretched, says Ms Cheesley. ‘Specialist services are not seen as important. Lots of trusts have got rid of their specialist nurses or they are now covering a much larger geographical area, making it harder to see patients in a timely way.’

Ms O’Hara adds: ‘Often there is a huge emphasis on providing products rather than anything else. That’s the knee-jerk response.’ In some cases, resources are being diverted towards funding products at the detriment of offering treatment, which she sees as a short-sighted approach. ‘Specialist services are cost-effective in the longer term. With knowledge and time to treat someone through exercises, lifestyle changes and sometimes medication, you can reduce their reliance on expensive products and sometimes remove the need for them completely.’

For Ms O’Hara, the success of the new guidelines depends on gaining the support of trusts and commissioners. ‘Unfortunately it’s not a commissioning priority and I don’t know whether these guidelines and the chief medical officer’s report will have enough impact to raise the profile,’ adds Ms Cheesley.

Top tips for continence care

‘The crucial thing is to ask your patient whether they have any problems,’ says specialist continence nurse Lee O’Hara.

Avoid using words such as ‘continence’ and instead use plain English. ‘Say it as it is’, advises RCN professional lead for long-term conditions and end of life care Amanda Cheesley.

Find out what services are available locally. ‘Some trusts don’t publicise their specialist services enough,’ says Ms O’Hara.

Ensure that you ‘understand continence enough to be able to talk about it and carry out an initial assessment,’ says Ms Cheesley.

Raise patients’ awareness that something can be done. Dietary advice, bladder retraining and pelvic floor exercises may be effective. A programme of pelvic floor exercises ‘can be revelatory’ says Ms Cheesley.

Continence care usually begins in GP practices, but often the issue has a low priority, particularly as there are no Quality and Outcomes Framework (QOF) incentive points attached to it. Part of the General Medical Services contract, these points give financial rewards for achieving good practice. ‘Without QOF points, there is likely to be less excitement and action about the guidelines,’ says Ms O’Hara.

She also thinks more positive patient stories would help raise awareness. ‘How often do you read about it in the press? The area is not sexy and there is little in the way of publicising problems or services,’ she says. ‘We need to let the wider public know that something can be done in the majority of cases and people need not just resort to using continence products’.

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