22 March 2024

It’s estimated that over half a million adults suffer from faecal incontinence in the UK[1], dealing with symptoms that can have a huge impact on their day-to-day lives. Despite this, there is relatively little research into how to manage or cure it.

Faecal incontinence is the inability to control bowel movements, resulting in the involuntary leakage of stool. It can be caused by muscular injury and ageing, amongst many other factors. Symptoms can range from occasional leakage when passing gas to a complete loss of bowel control. This can impact every aspect of someone’s life.

That’s why we were pleased to support the launch of a Priority Setting Partnership for faecal incontinence led by The Pelvic Floor Society and The James Lind Alliance (JLA). A Priority Setting Partnership, or PSP, is a project that aims to discover the top ten research priorities for a health condition by bringing together patients, carers, researchers, and health professionals. 

Baroness Finlay of Llandaff hosted the launch event at the Houses of Parliament and gave a welcome address explaining how important this topic is. We had over an hour of discussion, including moving stories from two patients explaining the impact of faecal incontinence on their lives. One patient, Karen, experiences faecal incontinence due to a traumatic injury during childbirth. She detailed how she had to give up a job she loved and work part-time, and how her life, including work and socialising, needs to be arranged around the availability of toilets. She also explained the difficulty of being met with a lack of understanding, disgust, and sensationalising when trying to talk to friends about it.

Although faecal incontinence mainly affects women, it does also affect men, who discuss intimate health issues even less due to stigma. A male patient, Chris, who developed faecal incontinence after bowel surgery, showed the attendees the equipment he used for irrigation, explained how he packs a change of clothes when he goes out, and highlighted that there are limited bag options available to men besides laptop bags for this purpose. Patients also discussed difficulty in travelling and how faecal incontinence limits travel options, and the problem that there may be a lack of public toilets or those that are available may be in a poor state.

During the conversation, other issues that were discussed included the impact on spouses and intimate relationships, as well as the difficulty for clinicians to truly understand the impact of the condition without experiencing it themselves. Faecal incontinence also gets very little attention compared to urinary incontinence, with a lack of understanding and available solutions. By the end of the session, it was clear that there is an economic and social cost related to faecal incontinence and the issue can impact every aspect of a patient’s life. However, one positive was that there are groups available to support patients – Karen explained how the charity MASIC helped her, and it was also raised that a male support group is in the process of being set up. 

We also heard from GP Aziza Sesay and colorectal consultant Julie Cornish who explained the issues from a clinician’s perspective. She highlighted that faecal incontinence has been removed from the curriculum for clinicians so new doctors will not be trained to treat this debilitating condition. Due to the varying causes of faecal incontinence and different medical and surgical specialities involved, there are also many different clinical referral pathways for patients as a result. Added to this is the issue of care being a “postcode lottery” depending on the location of the patient, and no standardised care pathway in place for faecal incontinence. 

The group identified several ways to promote the PSP, spread further awareness of faecal incontinence and share the patient survey developed by the Steering Committee to gain as many opinions as possible on the future of this research. 

This event marked the beginning of the PSP. If you are affected by faecal incontinence, we would love to hear your views on what should be prioritised in research. You can do this by completing the survey on The Pelvic Floor Society’s website.  


[1] https://www.england.nhs.uk/wp-content/uploads/2018/07/excellence-in-continence-care.pdf