Continence: why is such a serious issue so often overlooked?
A team of nurses is working to break the taboo around potentially life-threatening conditions
A team of nurses is working to break the taboo around potentially life-threatening conditions
- Potential consequences of bladder and bowel problems include sepsis, infection, respiratory and cardiac issues and social isolation
- Patients are often unaware that services or resources exist, outside of continence pads
- Specialist team says all nurses can help dispel embarrassment and assess patients based on the individual's 'normal'
When Sharon Holroyd wants to get across the importance of good continence care, she tells the story of one particular patient, a woman in her thirties with a young family and a degenerative spinal condition.
‘She was unable to walk her children to school because she was afraid of leaking,’ explains Ms Holroyd. ‘She began to put on weight, which made things worse – it was like she was on a hamster wheel and couldn’t get off.
‘Working with her, we encouraged her to consider various options – she still has to use products, but she does feel able to walk her children to school.’
Mission to boost awareness
Ms Holroyd is lead clinical bladder and bowel specialist nurse for adults and children at Calderdale and Huddersfield Foundation Trust. The service she leads is unusual because it covers the age spectrum, from children aged four upwards, to adolescents, adults and older adults.
Although much of its work is community-based, the team offers specialist support to the trust’s two acute hospitals.
Under the leadership of Ms Holroyd, it is on a mission to improve awareness of continence and the important role it plays in our overall health and well-being.
‘I’ve always liked the underdog, and continence is a Cinderella service. People take it for granted – you learn control as a child, and then you think that’s it’
‘We all think about the brain and the lungs and the heart as being important, and of course they are,' she says. 'But when my 33 feet of bowel starts to slow down I will get constipated.
‘In a worst-case scenario this could put pressure on the respiratory system and I could have a cardiac arrest. It means I’m more prone to infection, lethargic, less efficient – the impact can be huge.’
Relevant to every patient
Ms Holroyd began her career in orthopaedic nursing before moving to a general surgery ward that specialised in patients requiring colorectal care. She has worked in urology, renal medicine, and with stoma patients. Continence has, however, been a constant interest.
‘Continence ties it all together,’ she says. I’ve dabbled in it my whole career. It’s relevant for every patient and every clinical area.'
‘These are really serious issues, but somehow they don’t carry any weight’
‘Plus,’ she adds, ‘I’ve always liked the underdog, and continence is a Cinderella service. People take it for granted – you learn control as a child, and then you think that’s it.
‘But people are embarrassed about it. If you ring work to say you are off sick, you don’t say you have chronic constipation, you might say you had sciatica or something like that. Yet constipation can kill.
‘And if you have a urinary tract infection (UTI), you just think that everyone gets them sometimes and so you don’t worry about it. But we see people in A&E with sepsis with a UTI, and elderly people fall in the night because they are getting up to try to go to the toilet. These are really, really serious issues, but somehow they don’t carry any weight.’
As she speaks, Ms Holroyd repeatedly tries to dispel embarrassment about bladder and bowel issues – although she accepts that this is quite a challenge, given we are taught from childhood that going to the toilet is something we do behind a closed – often locked – door.
‘We all need to eliminate waste [from our bodies],’ she says. ‘If you don’t get your dustbin emptied, as we all know from various strikes over the years, then there’s carnage, isn’t there? It’s the same when you’re talking about your body’s bin.’
Working across acute and community settings
The Calderdale and Huddersfield continence team is small, consisting of Ms Holroyd, a specialist children’s nurse, a specialist adult nurse and an administrator. This makes the workload quite a challenge, particularly when there are staff vacancies or absences.
Between them, the nurses run face-to-face clinics and outreach. ‘We’re essentially dealing with any bladder or bowel disorder whether it’s in the community or in hospital – anything that affects normal bowel or bladder [function], including leakage, infections, not emptying properly, the whole lot,’ says Ms Holroyd.
‘Our face-to-face clinics are a bit like a GP practice – we see people, assess them, and try to determine what the cause is. We also see people in their own home, wherever that is, including care homes, and on occasion we visit hospital wards when they are struggling to help a patient.’
‘We nurses are terrible for this – we work long hours and don’t take the time to eat properly or drink enough, but this can cause problems’
Referrals come from other healthcare professionals, social workers, care staff, families and the patients themselves. ‘We try to be as open as possible and raise awareness about our services. For example, sometimes we talk to GP practices then we see an increase in referrals.’
Even so, it’s a constant effort to ensure people are aware that help and advice exists. ‘We try to get the message out there, but if I had 50p for every time someone said they didn’t know the service exists, I’d be a rich woman.’
Dealing with embarrassment
Persuading people to talk about their bowel or bladder problems can also be a challenge, even in a specialist clinic. ‘A lot of people won’t make eye contact,’ she says. ‘But what we want to find out is what is “normal” for each person – once we know their normal parameters, and find out what’s different now, we can take it forward.’
Sometimes it can be as apparently simple as finding out that people aren’t eating and drinking the right things, or enough of them. ‘Nurses themselves are terrible for this,’ she admits. ‘We work long hours and don’t take the time to eat properly or drink enough, but this can cause problems.’
Of course the service doesn’t – couldn’t – deal with everyone with a bowel and bladder problem. Rather, they are the people to turn to when more expertise is needed. ‘We take the more complex referrals,’ says Ms Holroyd, pointing out that all health and social care professionals should be trained and equipped to make an initial assessment and develop a management plan before calling on the specialist service.
'Think continence' with all patients
She urges all health and social care workers to ‘think continence’ with all patients or service users, particularly older people.
National guidance for commissioners produced by NHS England suggests a case-finding approach, by asking patients, for example, if they ever have problems getting to the toilet on time. It suggests service agreements should include a commitment to establishing referral pathways and training staff in simple assessments.
Other useful guidance includes a 2015 report on minimum standards for continence care, which draws a picture of an ideal service.
Recommended minimum standards for continence services
The Minimum Standards for Continence Care report (2015) makes recommendations, including on how to structure continence services.
It says services should include several levels, from a basic assessment, which can take place in any health and care setting, through to specialist services and including surgical and other interventions, where appropriate. Recommendations for basic continence assessment include:
- Healthcare professionals receive multidisciplinary education to promote continence awareness
- Staff who undertake continence assessments are trained and accredited in basic assessment techniques, including identification of red-flag systems and reasons for early referral to specialist teams (see below)
- Assessment of continence is undertaken with the goal of diagnosis and offering treatment
- Patients should include all those with urinary and/or faecal incontinence, including care and nursing home residents; pregnant women; people with long-term mental health conditions including dementia; those with physical disabilities; frail older people; and those with restricted access to healthcare
- A continence care plan relevant to both the bladder/bowel symptoms and the underlying condition is formulated for each patient
- Simple assessment tools such as bladder and bowel questions for a holistic nursing assessment, screening questionnaires, frequency volume charts and bladder diaries are available for basic assessments
- Patients who fail to respond to treatment are referred directly from the community-based practitioner to the specialist team
- Patients referred to specialist services should include those for whom treatment for urinary incontinence has failed: men with lower urinary tract symptoms; patients with urinary or faecal incontinence co-existing with neurological disease; women with pelvic organ prolapse; and some patients with voiding disorders
Ms Holroyd says all staff should be able to conduct simple assessments such as asking patients about their bowel and bladder habits to assess what is ‘normal’ for them, then asking them to keep a diary of what they eat and drink each day, and how many times they go to the toilet.
Keeping a diary can be a wake-up call for people who actually think they are drinking the recommended eight to ten glasses or mugs of liquid in a day, but aren’t achieving anything like this. Similarly, if someone is drinking a lot of coffee, for example, caffeine could be sparking or exacerbating continence problems.
Polypharmacy can be an issue, particularly in older patients, who are more likely to be on multiple medications for co-morbidities. ‘I look at each person as a whole,’ Ms Holroyd says.
She points out that when an individual’s toilet habits change that can indicate a problem, even if they still fit within national averages.
She argues that all health and social care staff should be equipped to monitor and recommend ‘tweaking’ someone’s lifestyle or environment to ensure they have the best chance of maintaining continence. This involves looking at the person as a whole and looking for potential barriers to getting to the toilet easily.
Being aware that a patient’s ‘normal’ will change over time is essential: a man with an enlarged prostate will have different toilet patterns and needs from those he had ten years ago.
Factors preventing someone getting to the toilet on time
Things to consider:
- Is the patient’s bed close to the bathroom?
- Are uncut toenails making walking painful?
- Is their eyesight stopping them from going to the toilet in the dark?
Misconceptions about pads
Dispelling myths and misconceptions about continence care is also vital, she says – and one of the most prevalent is that incontinence inevitably means pads. It's not just patients who believe this – clinicians, including non-specialist nurses, do too, she notes.
‘Sometimes people see us as a “pads service", but that’s not what we are,’ she says, although she accepts that containment methods such as catheters and devices like anal plugs can be used to good effect where necessary.
She also stresses that incontinence should not be seen as an inevitable part of ageing, and that early specialist intervention can help transform people’s lives, whatever their age.
‘We really do want to encourage people to take continence more seriously rather than just accepting it’
Indeed, she believes the fact that her service covers all ages is beneficial for patients, particularly those who would otherwise be transitioning from children’s to adults’ teams, as it allows relationships and trust to be maintained.
Being in a specialist team gives great opportunities, she says. ‘We’ve been able to challenge practice, and we’re prepared to push the boundaries; there’s not a one-size-fits-all approach. We’re part of a multidisciplinary team and work with specialists in many areas such as urology and gynaecology, and we’re also lucky that our GPs have been great to us.
‘But we really do want to encourage people to take incontinence more seriously rather than just accepting it. It’s isolating, it causes children to miss school, while older people can become housebound. With proper care, this doesn’t need to happen.’
Jennifer Trueland is a health journalist