Breaking the stigma around incontinence will lead to safer care

Summary

Incontinence is often described as the last medical taboo. Everyone from medics and patient representative groups, researchers and charities, to social scientists, marketeers and psychologists agree that it is a condition cloaked in shame, silence and stigma.[1]  

But how does that impact on patient safety? And are there any measures that could prevent potential harm?

In this blog, best-selling author Luce Brett explains why it’s so important to shatter the stigma surrounding incontinence, a condition affecting 34% of women in the UK.[2] Drawing on research from her recent book, and her own insight as a patient, Luce highlights how we can improve health outcomes for patients by simply talking about it more. 

Content

A dangerous silence

Historically, the combination of being a common symptom but also a massive taboo has meant that incontinence has sometimes slipped through the cracks, so to speak.

A group of UK charities, working for conditions where the disease or treatment can cause incontinence issues, found that stigma had a negative effect on research funding and investment.[3] There is also a lack of appropriate recognition in policy forums and political public health discussion. Some things are changing, and the NHS recognises continence and pelvic health in its five-year plan, but the stigma is still creating barriers to safe, quality care. 

We’ve known for some time that incontinence can negatively impact physical and mental health and overall quality of life. A significant percentage of patients with urinary incontinence suffer from depression.[4,5] The situation gets more worrying the deeper the dive into the murky worlds of faecal incontinence, which is perhaps the most smothered in embarrassment, discomfort and taboo. 

We know faecal incontinence is often under-reported, even amongst communities such as older women where it is relatively common.[6] The condition causes psychological distress in patients and can sometimes have a potentially devastating impact on sexual function. Some studies have suggested healthcare professionals can be reluctant to start investigations and enquiries about faecal incontinence as it can be a complex area to assess and they may not necessarily know a lot about current management.[7] That, combined with patients’ understandable sense of shame and reluctance, means silence wins, again. And when it does, it provides the perfect breeding ground for insidious inequalities and poor quality of life for the incontinent patient. Active screening could surely prevent actual lived misery.

Also, ‘urge’ urinary incontinence (when urine leaks as you feel a sudden, intense urge to pee, or soon afterwards) is significantly associated with falls in older patients,[8] depression, urinary tract infections, increased BMI, diabetes and death. So, the safety implications for patients are clear. 

The most common forms of urinary incontinence can often be cured – sometimes with surgery, but far more often with short, cheap interventions like pelvic floor physiotherapy.

However, a society-wide unwillingness to talk about it badly hampers patient-doctor conversations. In the UK, patients take an average of seven years to seek medical help for post-birth incontinence.[9] A long time to suffer the effects in silence. 

If patients don’t feel able to seek help, their continence issues could potentially worsen or they could develop related conditions and comorbidities. We know that comorbidity is associated with worse health outcomes, more complex clinical management and increased health care costs.  

When incontinence is a side effect of something more ‘serious’ – part of a neurological disorder, a cancer treatment, the reason for a fall or infection – it never seems to be at the ‘top of the list’ of things to talk about, despite the huge impact it has on a person’s daily life.[10] We have to ensure that incontinence is spoken about in settings beyond those dedicated to maternity, postnatal and pelvic healthcare. If patients with conditions linked to a higher prevalence of incontinence (e.g. COPD in women) are not asked about it, the silence and stigma will continue.[11]

I’m a writer, a patient and a lay contributor to healthcare initiatives. I’m not a researcher or a clinician. But I do have insight into incontinence after writing and speaking widely about it.

This year I launched my book, an intimate memoir and wider take on being an incontinent woman, PMSL: Or How I Literally Pissed Myself Laughing & Survived The Last Taboo to Tell The Tale. Anecdata from this work has revealed that many women who experienced urine leaking post-birth were brushed off by practitioners or labelled as ‘normal’. Some were told that they were making a fuss or complaining. Sadly, these experiences are not uncommon. The recent Cumberlege Review highlighted similar attitudes towards women who underwent surgical mesh implants. 

Adopting a safer approach

We really have to change the way we approach incontinence.  

We have to avoid dismissing, ignoring or trivialising it. If incontinent men and women are told their leaking is ‘just’ anything, ‘just’ an oops moment, ‘just’ a brief side effect, ‘just’ an inevitability after a vaginal delivery, ‘just’ a problem for their male partner in sex, ‘just’ a part of aging, then they are less likely to speak up or feel able to get help. They are already conditioned to put up and shut up. And that can make them more susceptible to further harm, both physically and mentally. 

By speaking about incontinence widely, clinicians will help it to become recognised as a legitimate and non-taboo healthcare conversation. This will mean more patients will be referred for help if incontinence is part of the full burden of their other conditions. It will also set a tone for stepping away from the harmful silence of the past.

Good practitioners are also mindful of the safety issue posed by not ensuring that the incontinent patient’s mental health is taken care of. They are prepared to create space for some of the most embarrassing or uncomfortable issues incontinent patient might face – such as sexual dysfunction or leaking during sex.

Ignoring incontinence may be less awkward or allow people to avoid difficult conversations. However, like all taboos in medicine, this comes at a cost to patients – leaving them prone to worse health outcomes. 

We can all do better than that.

Get 20% off Luce Brett's book 

Members of the hub can receive a 20% discount on Luce’s best-selling book, PMSL Or How I Literally Pissed Myself Laughing & Survived The Last Taboo to Tell The Tale.

To access the discount, please sign up to the hub and request the code by emailing us at content@pslhub.org. 

References

1. European Guidelines on Urinary Incontinence. World Federation of Incontinence and Pelvic Problems. 

2. Excellence in Continence Care. NHS England. 2018.

3. “My bladder and bowel own my life.” A collaborative workshop addressing the need for continence research. 2018.

4. Steers WD, Lee K-S. Depression and incontinence. World J Urol 2001; 9: 351–357.

5. Incontinence, anxiety and depression. Beyond Blue and the Continence Foundation of Australia. 

6. Meyer I, Richter HE. Impact of Fecal Incontinence and Its Treatment on Quality of Life in Women. Womens Health (Lond) 2005; 11(2): 225–238

7. Meyer I, Richter HE. Impact of Fecal Incontinence and Its Treatment on Quality of Life in Women. Womens Health (Lond) 2005; 11(2): 225–238

8. Brown JS, Vittinghoff E, Wyman JF. Urge urinary incontinence was associated with increased risk of falls and non-spinal, non-traumatic fractures in older women. Evidence-Based Nursing 2001; 4 (1): 26.

9. Breaking the taboo of incontinence after childbirth. National Childcare Trust. 2016.  

10. “My bladder and bowel own my life.” A collaborative workshop addressing the need for continence research. 2018.

11. Button BM, Holland AE, Sherburn MS et al. Prevalence, impact and specialised treatment of urinary incontinence in women with chronic lung disease. Physiotherapy J 2019 105 (1): 114-119.