Medical conditions impact on children’s experience of and participation in education. This was recognised by the legislators when Section 100 of the Children and Families Act 2014 placed a duty on ‘… governing bodies of maintained schools, proprietors of academies and management committees of PRUs (pupil referral units) to make arrangements for supporting pupils at their school with medical conditions’ (Department for Education [DfE], 2015). Qualitative research with young people has highlighted that teenagers will rarely disclose bladder and bowel health issues in school due to fear of stigma, bullying and isolation (Whale et al, 2017), while the author’s clinical experience is that younger children and families of children of all ages also worry about the reactions of other pupils and school staff if they discover that their child has a continence difficulty.

There are over 14 million children under the age of 18 living in the UK (Office for National Statistics [ONS], 2020). Heron et al (2017) found that 13.8% of children had some delay in attainment of, or difficulty in the maintenance of daytime bladder control. Constipation is the commonest cause of bowel issues in children and young people and has a pooled prevalence of 9.5% (Koppen et al, 2018). Additionally, some children are affected by rarer conditions, such as neuropathic bladder and/or bowel, anorectal malformations, Hirschsprung’s disease, bladder exstrophy, etc, which make continence attainment difficult, or impossible, or that require specialist interventions, such as catheterisation, bowel washouts or stomas. This equates to large numbers of children and young people with a wide range of functional or structural bladder and bowel difficulties attending schools throughout the United Kingdom.

Although prevalence is high, continence issues in childhood are often neglected or given cursory attention in undergraduate and postgraduate training for medical, nursing and allied healthcare professionals, and so they remain poorly understood. 

Furthermore, in the author’s clinical experience, children’s specialist bladder and bowel service provision is not universally available across the UK and, where there are services, these are not always adequately resourced, resulting in significant waiting times, distress and potential escalation of difficulties.

Bladder and bowel issues remain a source of embarrassment, are taboo subjects for discussion throughout society, and so myths remain in circulation. Potentially, the most damaging of these are that:

• The problems are self-limiting
• They will inevitably improve with time
• They do not affect teenagers
• Incontinence in young children is due to parental failure to toilet train.

The consequence of these erroneous beliefs is that some professionals consider that continence difficulties are not medical, but behavioural or emotional in origin. Consequently, support offered to affected children and young people in educational establishments varies.

Despite the DfE guidance on supporting pupils at school with medical issues (2015) stating that: ‘… it is not generally acceptable practice to… … prevent pupils from drinking, eating or taking toilet or other breaks whenever they need to in order to manage their medical condition effectively’, and that it is unacceptable to ‘… require parents, or otherwise make them feel obliged, to attend school to administer medication or provide medical support to their child, including with toileting issues…’, increasingly those contacting helplines run by both Bladder & Bowel UK and ERIC, The Children’s Bowel and Bladder Charity, were raising concerns about the understanding of education professionals and the care offered to children in nurseries, schools and colleges. Specialist healthcare professionals at a regional meeting, several of whom were having problems finding support at school for children who were on their caseloads, all agreed that national guidance would be helpful.
 

Bladder & Bowel UK and ERIC collaborated to try and address the issues in as simple and accessible a way as possible. Although there was much good work being done at a local level between children’s services and schools, it was felt that one national guidance document with all the relevant and updated information in one place, easily available online, would be beneficial to children, families, health and education professionals.

The project took a year to complete and involved scoping and reading information that was available and confirming what legislation and guidance already existed in all four nations of the United Kingdom. A draft document was written by representatives from the two charities, and this was circulated to health and education professionals, school governors, nursery, school and college staff, parents, and relevant departments of the devolved governments, before being reviewed and a final version agreed.

Managing Bladder and Bowel Issues in Nurseries, Schools and Colleges (Bladder & Bowel UK and ERIC, 2019) was published online in October 2019 and is freely available to download. In addition, Word versions of a school toilet charter, a sample care plan and a sample intimate care policy were also devised and made available online. These were produced in this format to make it straightforward for educational establishments to adjust them to suit their individual needs and those of their learners.

The guidance provides comprehensive information, including:

• The causes of bladder and bowel difficulties in children and young people
• How to promote bladder and bowel health in educational establishments, including by encouraging adequate hydration throughout the day and open access to clean and well-stocked toilets
• Information on safeguarding with respect to intimate care and how to support children who need help with changing
• Health and safety information
• How to promote good communication with home on this sensitive aspect of care.

The appendices to the document include information on the different functional and structural bladder and bowel conditions, how these may be managed medically, as well as providing sources of support to professionals and families.
 

Within six months of initial publication of the guidance, we were faced with the unprecedented situation of the Covid-19 pandemic and educational establishments closing to most children. Anecdotal evidence suggests that many with continence conditions did well in the early lockdowns, which may be due to spending more time with families, who were able to focus on good drinking and toileting routines, alongside prescribed medical interventions. However, return to school and easing of lockdown appeared to increase anxiety for many and there is widespread awareness of the impact of the restrictions on mental health (Mahase, 2021) and safeguarding (Leivne et al, 2020) for children and young people, which may have had a negative impact on continence for at least some.

The number of calls to the Bladder & Bowel UK and ERIC helplines about concerns with managing continence issues at school seemed to increase in September 2020. ‘Bubbling’ at school was the focus for many, who were concerned that the resulting allocation of fixed times for many children to access the toilet in the school day, presented obvious difficulties for those children with urinary or faecal urgency and/or incontinence, heightening anxiety for families, as well as for education staff who were worried about the implications of providing intimate care.
 

In response, Bladder & Bowel UK and ERIC produced a supplementary document and recommendations, based on government guidance to reduce the risks of transmitting Covid-19, while still delivering the curriculum and providing the support that individual learners required.

Bladder & Bowel UK and ERIC are delighted that the guidance has been supported, endorsed or awarded by a variety of respected organisations. However, promoting continence in children and young people of all ages remains a significant concern for both charities. It is hoped that through the use of the guidance and associated documents, fewer children will experience the negative impacts so often associated with continence difficulties, that have previously been subject to poor understanding.