Bladder and bowel issues are often overlooked, but for 1.5 million children across the UK they are life altering.
From missed school days to plummeting self-esteem, the ripple effects of unaddressed continence problems impact every part of a young person’s life.
“We can be really creative about how we create our services, but there does need to be some recognition that a service is required”
Sunni Liston
The scale of the problem cannot be understated, with record numbers of children presenting at the emergency department with constipation and an increasing number starting school not toilet trained.
Despite this, paediatric bladder and bowel care remains patchy, leaving many children and their families without adequate support.
Amid these challenges, specialist bladder and bowel nurses are working tirelessly to address gaps in care.
They have spoken to Nursing Times about the current state of children’s continence provision, and the investment and recognition needed to tackle the problem at its root.
The Paediatric Continence Forum (PCF) estimates that bladder and bowel problems affect more than 1.5 million children and young people in the UK, having a negative impact on their physical and mental health, as well as their social, educational and psychological development.
In a commissioning guide published last year, the forum stressed the importance of early identification and treatment to improve children’s health, development and wellbeing, and set out what ‘good’ looks like for paediatric continence provision (see diagram).
The guide stated that all children from birth to 18 years with bladder and/or bowel issues and/or delayed toilet training “should have access to a fully integrated children’s community bladder and bowel service”.
This service, led by a children’s bladder and bowel nurse specialist, should have clear and effective care pathways from level one services to level three.
Sunni Liston, a paediatric bladder and bowel nurse specialist and nurse at ERIC, a children’s bladder and bowel charity, told Nursing Times that only a third of areas in the UK were providing a fully integrated pathway.
Due to gaps in provision, she noted that “lots of children are going straight up to level three” resulting in “massive waiting lists on paediatrician caseloads”.
These delays could be causing chronic and sometimes lifelong continence issues for children, she explained.
Ms Liston called for greater recognition of the need for paediatric bladder and bowel services, arguing that there “could be huge cost savings” for the NHS if conditions were spotted earlier.
“Funding [these services] would be really advantageous overall cost-wise and, obviously, [would have a] huge impact on outcomes for children as well,” she explained.
While Ms Liston acknowledged that it might be “unrealistic” to have the fully integrated pathway embedded across the UK, she argued that services could still be commissioned based on “the resources you’ve got”.
Sunni Liston
She added: “We can be really creative about how we create our services, but there does need to be some recognition that a service is required.”
Ms Liston, who has a background in health visiting, cited the increasing pressure on public health nurses and dwindling workforce numbers as central challenges to delivering the PCF framework.
She warned that these nurses were often dealing with complex caseloads, which were taking priority over health promotion and prevention work.
For this reason, addressing bladder and bowel issues with families “doesn’t get the time and attention it deserves”.
“There’s competing priorities and demands, so it slips down the list,” she said.
This was echoed by Alison Morton, chief executive of the Institute of Health Visiting.
She noted that the organisation’s annual state of health visiting survey showed that 72% of health visitors in England were concerned about the erosion of the health aspects of health visiting, as child protection and child safeguarding were prioritised.
She told Nursing Times: “In the past, health visiting services would have been parents’ first port of call if they needed support with potty training.
“However, the way health visiting services are now designed and resourced has been left to local decision making.
“In some areas, families get a good level of support whereas, in other areas, no early support is available and community clinics have been closed or scaled back.”
Ms Morton’s comments allude to another concerning trend that has emerged in recent years: the increasing number of children starting school who are not toilet trained.
A school readiness survey by early years charity Kindred², published earlier this year, found that one in four children starting school in England and Wales in 2024 were not toilet trained.
Just under half of parents surveyed (48%) believed it was wholly their responsibility to ensure their children were toilet trained.
Meanwhile, three-quarters (76%) said toilet training was something a child should be able to do before starting reception.
“We should be promoting children’s bladder and bowel health from birth”
Brenda Cheer
The report warned that school staff were diverting 2.4 hours a day, on average, away from teaching to support children who are not school ready.
Of the 1,000 teachers surveyed, 70% said that pupils who were not toilet trained had a major or moderate impact on class progress.
Sallyann Sutton, professional officer at the School and Public Health Nurses Association, told Nursing Times that school nurses had reported that “more and more children are reaching reception age and are not ready for school”, including not being toilet trained.
She said the main challenge was “fragmented commissioning of services”.
Ms Sutton added: “If all areas were commissioned adequately and able to fully deliver the Healthy Child Programme 5-19, school nursing teams would be able to focus on provision of public health interventions to support continence.”
Last month, ERIC launched a campaign to combat the trend of later toilet training. It comes as the charity has seen a rise in calls to its helpline from families experiencing bladder and bowel issues, particularly from parents whose children are due to start school but are not ready.
Brenda Cheer, an ERIC nurse and paediatric specialist continence nurse, told Nursing Times the All Aboard the Toilet Train campaign provided advice and support to families during their toilet-training journey.
The key message for parents is “don’t worry, not all is lost”, she said.
Brenda Cheer
Ms Cheer argued that it was imperative to get toilet training right, as delays could lead to “potentially late diagnosis of bladder and bowel issues” that, in turn, could put pressure on NHS services.
She said: “If the child is in nappies all the time, we don’t know if their bladder is emptying too frequently, for instance. We’re not noticing because they’re not in pants [or] using the toilet.”
She urged parents and health professionals not to wait until children were referred to paediatric continence services to act.
“We should be promoting their bladder and bowel health from birth,” she said.
A similar trend observed over the last few years is the number of school-aged children experiencing constipation, Ms Cheer noted.
Data from NHS England, published in February this year, showed that there were more than 44,000 child admissions to hospital with constipation in 2023-24 – up from around 29,000 in 2014-15.
Ms Cheer said that proper evidence-based guidance on toilet training at a young age could help curb this trend.
She added: “If these children are not sitting on the potty or not sitting on the toilet at all, that’s going to be a contributor towards constipation.
“Children can start sitting on the potty from 6-9 months old. The age when a child can sit up, that’s when they should start sitting on a potty.
“I don’t mean taking their nappies off at that stage, I mean practise.”
Despite all the challenges, there is much to be hopeful about in the paediatric bladder and bowel space.
Davina Richardson, a children’s specialist nurse at Bladder and Bowel UK, noted how the “government agenda is changing again” with a greater focus on shifting care from sickness to prevention.
She told Nursing Times: “I think this is a real opportunity for us to actually say ‘we can do some of that prevention work’, as paediatric bladder and bowel services and as charities working within this space.”
Positively, Ms Richardson felt provision was “massively better” than when she first started in the specialty.
Davina Richardson
In services being properly commissioned, she said that staff were “doing brilliantly” and “seeing more children”.
She also highlighted an increasing interest in research on paediatric bladder and bowel issues.
She hoped to see a “snowball effect” from this good work.
“When I started out, there was me and about half a dozen other [nurses] scattered around the country,” noted Ms Richardson.
“Now, we’ve got services in lots of different areas, and in some areas, we’ve got really well-resourced services.
“We are so much farther down the road, and it does seem like – with so many of these things – that the pace of change is increasing.”
