The case for integrated and community children’s continence services

Children’s continence services need to be integrated and community-based to provide effective care

Children’s continence services need to be integrated and community-based to provide effective care 

Illustration depicts a child discovering he has wet the bed. Davina Richardson, a children’s specialist nurse at the charity Bladder & Bowel UK, writes about the importance of commissioning integrated children’s continence services.
Picture: iStock

For bodily functions that are under voluntary control, there is an almost universal expectation that early in childhood we will attain the skills for independence and learn societal rules about managing in private.

Consequently, for those children and young people with bladder or bowel difficulties, problems are largely hidden, either as a result of assumptions that there is a simple delay in development, or due to the stigma and embarrassment associated with such personal issues.

The impact of bladder or bowel dysfunction on quality of life for the child and family are significant. They include stress, reduced self-esteem, social isolation, behavioural disorders, and emotional and psychological problems, as well as reduced school attendance and attainment.

The most common conditions exist without diagnosable abnormalities

There are associated financial costs that have a disproportionate effect on those who have a low income. Some families respond punitively, which may have safeguarding implications (Paediatric Continence Forum 2019).

It is estimated that more than 900,000 young people are affected by bladder and bowel issues (NHS England 2018). However, population statistics, alongside prevalence data and under-reporting, suggest that the true figure may be significantly higher.

The most common bladder and bowel conditions, including most constipation, daytime wetting and nocturnal enuresis, are functional: they exist where there are no diagnosable anatomical, physiological, radiological or histological abnormalities.

Paediatric continence is a relatively new specialism

Childhood continence difficulties have repercussions for NHS resources. Hospital Episode Statistics for admissions due to chronic constipation and urinary tract infection suggest that some NHS trusts are having to make significant financial investment in dealing with functional difficulties that are often simple to treat if caught early.

There is also the cost of attendances at emergency departments by worried families whose children have abdominal pain, referrals to paediatricians for children whose symptoms have not resolved with GP management and provision of products to children with additional needs and delayed toilet training.

Paediatric continence is a relatively new area of specialism and service provision in the UK remains patchy. The Paediatric Continence Forum (PCF) was established in 2003 to improve government awareness and NHS services in this area. In 2014, against a background of continued fragmentation of services and as evidenced by freedom of information requests between 2011 and 2014, the PCF produced a Children’s Continence Commissioning Guide to support local service development. 

Picture shows a mother remonstrating with a boy in pyjamas sitting on a bed he has wetted. The article argues that children’s continence services need to be integrated and community-based to provide effective care.
Picture: Alamy

Children’s continence service provision has deteriorated

Provision of children’s continence services has deteriorated since 2014.

In 2015 the commissioning for school nursing and health visiting was transferred from NHS England to Public Health England with the Healthy Child Programme 0 to 19 guidance documentation stating that commissioning clinical support for children with additional health needs or long-term conditions and disabilities, including clinical support for enuresis, ‘lies with NHS England and clinical commissioning groups, to ensure coordinated support across the life course’. 

Consequently, much support run by school nurses (level/tier one) was withdrawn, although in a small number of areas this work was specifically commissioned by clinical commissioning groups (CCGs) or health boards. Where this did not happen no service was offered. In many areas where tier two specialist services existed they suddenly found themselves overwhelmed.

Many affected children have more than one continence difficulty. For example, enuresis may be associated with daytime wetting and both are often associated with constipation (Arena and Patricolo 2017). Constipation and bladder issues are more common in children with additional needs (Von Gontard 2013). Although rare, congenital bladder or bowel conditions occur more frequently in those with moderate to severe learning disabilities, Down’s syndrome and cerebral palsy. If unrecognised they may result in chronic bowel changes or renal problems (Rogers and Patricolo 2014).

Advantages of integrated services providing holistic care

Splitting services into single condition clinics, such as having a stand-alone service for enuresis, or for constipation, means that finding appropriate treatment and support is more complex for the family and treatment pathways may be more protracted. Parents worried about wetting may be unaware that their child has constipation. Some people may assume that a child with additional needs is unable to stay clean and dry that they are not ready to toilet train, when in fact they have an underlying issue.

This means that integrated, community-based, children’s continence services are fundamental to providing holistic, high-quality, cost-effective care. These should be part of one service offering assessment and treatment for constipation, soiling, day and nighttime wetting and support for toilet training as well as provision of containment products for children assessed as unable to attain continence.

A PCF Freedom of Information request in 2017 found that only 31.5% of CCGs in England were commissioning integrated children’s continence services. Although this was a slight improvement from 2014 it suggests that two thirds of children and young people in England were not being offered a comprehensive continence service.

A cost-effective model of care responsive to children’s needs

In Scotland 23% of health boards had an integrated service, there were none in Wales and 60% of health and social care boards in Northern Ireland were commissioning these services. No information was gathered to indicate whether the services, where they do exist, were adequately resourced.

It is against this backdrop that the PCF launched its fully revised and rewritten Continence Commissioning Guide. It provides a comprehensive, evidence-based tool to support the commissioning of integrated community-based continence services to all children and young people up to the age of 19.

The guide is based on evidence from the National Institute for Health and Care Excellence, NHS England, International Children’s Continence Society standardisation reports and published research and meets the criteria of the NHS Long Term Plan. It offers a cost-effective model of care delivery, while being responsive to children’s needs.

Davina Richardson, a children’s specialist nurse at the charity Bladder & Bowel UK, writes about the importance of commissioning integrated children’s continence services.Davina Richardson is a children’s specialist nurse at the charity Bladder & Bowel UK




This article is for subscribers only