The empowered patient: signposting the pathway to find help

The patient pathway, the sequence of assessments and therapies undergone by a patient to address their condition, needs to be more clearly communicated and more strongly mandated for pelvic floor disorders and incontinence. Pelvic floor health should be included as standard in the opening discussions of GPs, district nurses, health visitors, and other health professionals with new patients, particularly pregnant women and those most likely to be susceptible (for example, those who have undergone surgery). While continence pads are important, they should not be the end of the discussion for any patient with pelvic floor problems. That said, a postcode lottery in the UK leads to many patients buying their own: some GPs are not allowed to prescribe even pads without a formal diagnosis, which can be hindered by the delays in secondary care.

Patients must be made aware that treatment is available and that a number of conservative and minimally invasive interventions are an option before the last resort of surgery. Early intervention can reduce the chance of long-term conditions requiring invasive treatment, and improve patient outcomes.

If a patient cannot find support in primary care, self-referral is an option. Bladder and bowel community continence services should be made as accessible as possible – or as a minimum, specialist nurses or appropriately trained AHPs should be engaged to serve the local population.

Patients may, however, not be aware of local services and how to reach them: regional listings of services should be made available to ensure they are empowered to take this step. Partnerships with industry could be highly beneficial here: the packaging of incontinence products is an ideal location for information and guidance on how to find support. Manufacturers have made strides in recent years to provide more health information and advice on websites and consumer and healthcare professional materials. A number also run helplines with medical or product advisors.

Once on the treatment pathway, patients can find the journey confusing and frustrating. Reports from multidisciplinary team (MDT) meetings (see Chapter C) are not often shared with the patients whose cases were discussed, but this can help them to understand what was suggested, what was agreed and the ultimate outcome – potentially increasing trust as well as understanding.

The educated healthcare professional: provide education and training for GPs and nurses

GPs have a broad educational curriculum, which must include adequate training on pelvic floor disorders and their treatment. GPs should be aware of the appropriate referrals for their patients, as well as the community-based, minimally invasive treatment options available. A listing of regional services, as well as being helpful for patients, would be invaluable to GPs in this regard.

Nurses and carers (particularly those who work in care homes) are a major source of information and support for patients and thus their education should also include the range of treatment options available for incontinence. In addition, ways to support and maintain bladder and bowel health – such as an appropriate diet – should be included in nurses’ training in order that they can pass this knowledge on to their patients.

Updated national guidelines are an important tool to improve HCP awareness, as well as supporting joined-up care, and would be welcomed.

An engaged public: a national awareness and education campaign

One of the biggest problems with addressing the issue of incontinence is the associated taboo and embarrassment. A broad, friendly, national campaign, with accessible and memorable branding, can help to start a conversation around pelvic floor disorders and the help available. Such a campaign could perhaps be timed to coincide with World Continence Week (17–23 June in 2021), or a UK-specific Continence Awareness Month could be launched to bring together all the different specialties.

Appropriate use of language, such as describing incontinence as a ‘life-limiting’ or ‘life-changing’ condition, can also help to adjust perspectives and attitudes. Industry, as well as government bodies, could be a source of funding for such a campaign, and could also support the campaign through product packaging and advertising to ensure a wide reach.

Incontinence should not be seen as a normal part of life, to be endured rather than addressed. Early and universal education, targeting both children and adults, including those with physical and learning disabilities (particularly those undergoing relevant life events such as pregnancy or surgery), can help to ensure people are aware of the steps to take to maintain their bladder and bowel health, key signs to be aware of and the steps to take if they suspect a problem (Arbuckle et al., 2019). Leaflets are not universally permitted in GPs’ surgeries: allowing these to be displayed in surgeries throughout the country would be a major step forward.

Schools, along with school and community nurses, have an important part to play to ensure that children, along with their parents, understand how to maintain bladder and bowel health, and whom to turn to if they have a problem. Incontinence is seen in adolescents and young people (Arbuckle et al., 2019; Gram & Bø, 2020), but many are unaware of the existence of the pelvic floor or of how to train and protect it (Gram & Bø, 2020; Parden et al., 2016). The children’s bowel and bladder charity, Eric (https://www.eric.org.uk/), and Bladder & Bowel UK, are heavily involved in raising awareness: this work should be encouraged and continued. The Association for Continence Advice has been heavily involved in producing videos and information sheets, for example on how to perform pelvic floor exercises, which can help to support young people to maintain their pelvic floor health. This is particularly key for children, as paediatric incontinence is a trigger for domestic violence towards children (Bennett, 2014). Care must be taken, however, to ensure that ‘healthy living’ is distinguished from serious disorders such as inflammatory bowel disease.

The work of raising awareness and enhancing education is critical to minimise the number of people enduring incontinence as a ‘normal’ part of life. As well as government and patient support groups, industry has a role to play here: product packaging and advertising can encourage patients to present to their doctors and to receive the help available, which can greatly improve the issue; in fact, the majority of bladder symptoms can be either entirely remedied or substantially improved via pelvic floor training and lifestyle interventions delivered by specialist pelvic health practitioners (Johns Hopkins, 2020). Action taken now can have an enormous impact on patient wellbeing in the future and ensure that pelvic floor conditions can be treated in a timely and effective way.