Despite the cultural and social changes of the 20th and early parts of the 21st century, most people are embarrassed about normal bodily functions – many of which continue to be cloaked in mystery and stigma to much of society.
Certain subjects remain taboo in conversation, including within intimate relationships, such as a parent with their child, or between married couples.
The urinary and digestive systems, with their production and elimination of waste, remain a topic not easily discussed. As a result, those who need our services may feel uncomfortable about receiving letters or phone messages from the ‘Continence Service’. Some community-based services are rebranding to something more sanitised and are changing their names to variations on the theme of ‘Specialist Bladder and Bowel Service’ or ‘BaBs Service’.
One service, for example, was asked if letter headings could be changed to ‘Physiotherapy Department’ instead of ‘Continence Service’, as a patient’s manager needed to see the letter before permitting time off work to attend an appointment. The patient told the service that “they will treat it as a proper medical problem if I am seeing a physiotherapist, but not if I am just wetting myself”.
It is not just about avoiding the term ‘incontinence’. Another service that had rebranded found that, while the general public preferred the name, care home staff did not. The staff became confused about the purpose of the service, asking ‘why do we need a Bladder and a Bowel team when [the residents] just need pads?’.
“Is the term ‘incontinence’ one that creates distance, rather than engaging the individual of their carers to seek healthcare?”
Care home staff seemed happy to refer to the ‘Continence Service,’ and when the team member arrived would announce: ‘the incontinence nurse is here’, or even at times ‘the incontinent nurse is here”!
While there is no malice in these phrases, they raise the vital question for care delivery: is the term ‘incontinence’ one that creates distance, rather than engaging the individual or their carers to seek healthcare?
Illustrating this further, was the smart new waiting room in a clinic building labelled ‘Incontinence Clinic’. Which of us would be happy to sit under such a sign?
Additionally, reception staff may use insensitive language announcing, ‘if you are here for the incontinence clinic, take a seat’. The words ‘continence’ and ‘incontinence’ roll easily off the tongue when used for a third party. It may feel different and unkind to those living with the bladder or bowel problems.
Unfortunately, too many terms are available, which perpetuate the problem, for example ‘bladder weakness’, ‘sensitive bladder’, ‘accidents’ and so on. While the latter may refer to either urine or faeces, respectful phrases for bowel incontinence remain scarce.
Many of us experience friends or acquaintances who will ask for medical advice when they see us going about our everyday business. Playgrounds, social functions, supermarkets, car parks – anywhere where discreet conversations may take place will do – being approached may even result in us undertaking as much health promotion and signposting when away from work as we do when we are there.
NHS provision of continence containment products (pads) has done little to foster respect for promoting bladder and bowel health, with many people still considering us ‘pad nurses’, who are simply there to recommend products. Nothing is further from the truth, yet our assessment, diagnosis, support and treatment of often complex conditions alongside significant comorbidities is usually unrecognised, as is our ability to positively impact the quality of life for those affected and their families.
Continence services are rarely consultant-led, nor do they feature in government health targets. In comparison to other specialist areas, such as diabetes, heart disease, respiratory care, infection prevention and tissue viability, our services are often considered inferior.
Comments such as ‘people do not die of incontinence’ are unhelpful and untrue. Mortality associated with falling as a result of urinary urgency and incidences of young people with learning disability dying as a result of complications from unrecognised constipation are a reality.
“We need to talk about appropriate language if we are ever going to debunk the myths and move forward”
Sensitivity, education and clarity about what we do, and the use of consistent terminologies remain thorny issues for us to resolve. We need to talk about appropriate language if we are ever going to debunk the myths and move services forward. This is not simply about semantics but is essential to express our purpose and values. There is much to resolve, both when considering the most fitting terms to use to label or brand our services and when promoting continence as an essential part of the health and rehabilitation agenda.
Bladder and bowel health need to be considered as fundamental in the same way that mobility might be for those with long-term conditions.
Perhaps the prevention and improved self-management themes of the NHS Long Term Plan will influence continence service models and language at service and at policy levels. It is widely acknowledged that poor care in this area results in wastage of restricted NHS resources: pad provision where treatment may have been effective; preventable hospital admissions for constipation and urinary tract infections. Hopefully this will occur before most of the specialist clinicians in the community have retired.
The history of poor investment in succession planning for specialist clinicians, or of bladder and bowel education for those starting their careers in health care, will rapidly result in recruitment issues.
When we no longer have any specialist bladder or bowel services left, things may well turn in a full circle with the suggestion that it would be a good idea to have a specialist bladder and bowel service. However, while we are still here, we must try to do more to highlight and challenge these issues. Furthermore, we need to agree on the most appropriate language for our services and ensure these terms are used.
Davina Richardson is specialist nurse, Bladder and Bowel UK; Jo Booth is professor of rehabilitation nursing, Glasgow Caledonian University; Sharon Eustice is consultant nurse, Cornwall Foundation Trust; Liz Howard-Thornton is clinical team lead specialist, Bladder and Bowel Service (North Lancs), University Hospitals of Morecambe Bay Foundation Trust; and Melanie Reid is patron, Association for Continence Advice.