Add us as a preferred source
Davina Richardson, specialist children’s nurse at Bladder & Bowel UK, writes that children’s continence is often considered an awkward inconvenience rather than a serious health issue.
There are childhood health problems that rightly command attention. Rising mental health referrals, delays in autism assessments, increasing obesity and deteriorating dental health access have become national debates. Bladder and bowel conditions rarely receive the same response.
That might be understandable if they were rare, harmless, or difficult to treat. They are none of those things.
Recent Freedom of Information responses from more than 160 NHS trusts show children in some parts of England waiting up to two years for specialist bladder and bowel assessment and treatment, with waiting lists stretching into the hundreds. The picture is clear: access depends on local resourcing, with too many families left to cope alone for too long.
A silent and secret struggle
The statistics are alarming but reveal little about the realities of life during the wait. For many, managing incontinence is a silent and secret struggle. Parents try everything to get their child clean and dry before reception. Children dreading school trips because they do not know whether they will reach a toilet in time. Teenagers avoiding sleepovers rather than worrying about how they will explain an accident. Parents carrying spare clothes, planning outings around toilet access, if they feel able to leave home at all, while trying to bolster a child whose confidence and self-esteem are being eroded.
None of this is captured by waiting-list spreadsheets. Instead, it is measured in missed education, cancelled plans, family stress, and children avoiding normal social opportunities and extra-curricular activities.
Recent clinical guidance from the Royal College of Nursing highlights the profound and lasting effects. Children report embarrassment and shame, while older children and teenagers may withdraw socially because they fear bullying or being treated differently. Continence problems in adolescence have also been linked to depressive symptoms, peer victimisation, reduced self-image, and negative experiences of school. One young person described their condition as “not life-threatening, but life-ruining”.
The unpredictability of symptoms places considerable pressure on daily life for the whole family, particularly as children reach school age. Parents describe anxiety, guilt, and a sense of failure when their efforts do not result in improved continence. Many are managing a health condition without the specialist knowledge and support their child needs.
This is especially frustrating because most childhood bladder and bowel issues are treatable. With early assessment and intervention, symptoms can often be managed before they become more complex or enduring. Yet too many children are waiting months or years for that help.
Access depends not only on awareness that these problems are not developmental or time-limited but also relies heavily on where a family lives. Only 45% of Trusts said they provide a dedicated children’s bladder and bowel service, while 40% said they do not. In some areas, services have been reduced or access restricted through tighter referral criteria. Some require additional steps before offering an appointment, others will not accept a child with bowel symptoms unless bladder problems are also present.
This is not a coherent national service. It is a postcode lottery built around a health problem that many families are already too embarrassed or ashamed to discuss.
When children’s services cannot provide support, the need does not disappear. It is pushed elsewhere. Adult continence teams are providing products and care to hundreds of children. These teams are working to fill gaps in paediatric provision while facing demands of their own.
The NHS then pays twice: first through the absence of timely community support, and again when untreated problems require more GP appointments, specialist referrals, hospital care, or emergency treatment, as well as product provision. What appears to be a low priority becomes more complicated and expensive, precisely because it was not addressed promptly. Wider society also pays when children and teenagers do not meet their potential.
Struggling for attention
The issue struggles to attract attention. Part of the explanation is cultural. Bladder and bowel problems make adults uncomfortable, and stigma makes the affected children want to remain unnoticed. Their difficulties are dealt with privately – in bedrooms, bathrooms, school toilets, and in anxious conversations between parents and teachers. There is rarely a dramatic moment that forces the rest of us to pay attention.
However, the absence of drama should not be mistaken for the absence of harm.
There are often conversations about early intervention, children’s and teenagers’ mental health and the barriers that keep pupils out of education. Continence care sits at the intersection of all three. The family unable to toilet train their child who has an undiagnosed bladder or bowel issue. The pupil fearful of wetting, soiling or needing the toilet during lesson time who avoids school. The teenager withdrawing from friends because of shame. All are dealing with far more than a physical symptom.
A family waiting two years for help are not simply sitting on an NHS list. They are restricting and reorganising daily life around a condition that can and should be treated.
For too long, children’s continence has been considered an awkward inconvenience rather than a serious health issue. An overstretched system is waiting for problems to deteriorate, become more complex and difficult to treat before acting. Children, teenagers and their families should not be left to reach crisis point before the system decides their condition matters.
