Commissioning guidance accredited by the National Institute for Health and Care Excellence (NICE) has been launched to address a lack of improvements in paediatric continence care.

The guidance recommends that the four main continence services (covering bedwetting, daytime wetting, toilet training and constipation/soiling) should be "joined-up” and run by dedicated paediatric continence professionals.

Freedom of Information

A Freedom of Information (FOI) survey performed by the Paediatric Continence Forum (PCF) in August 2014 revealed that clinical commissioning groups (CCGs) in England are failing to provide proper integrated paediatric continence services for the 1 in 12 children and young people with continence problems. Only 32% of responding CCGs commission all the four main continence services (covering bedwetting, daytime wetting, toilet training and constipation/soiling) – with just over 22% of responding CCGs commissioning services that are fully "joined-up”.

This picture shows little improvement since CCGs took over responsibility from primary care trusts (PCTs) in April 2013. A similar study undertaken by the PCF in 2011 showed that 25% of PCTs commissioned the four main services and about 12% of these described their services as "joined-up”. This is only a 10% improvement.

Little over a third (39%) of CCGs who responded to the 2014 FOI request said that they had plans to commission new paediatric continence services, or to even review their existing provision. This suggests that a large number of CCGs are relying on universal services, such as school nurses and health visitors to handle childhood continence problems, rather than ensuring that children have access to properly trained continence professionals.

Paediatric Continence Commissioning Guide

To address this deficit, the PCF has published a comprehensive guide, called the Paediatric Continence Commissioning Guide, which provides clear advice to commissioners and healthcare professionals on how to commission integrated, community- based paediatric continence services.

This guide has been accredited by NICE and is being formally launched alongside the NICE Nocturnal Enuresis Quality Standard, which highlights key quality improvement areas for the management of bedwetting in children.

Professional endorsement

Dr Penny Dobson MBE, Chair of the PCF and one of the report’s authors, commented: "Continence difficulties contribute to serious bullying at school and worry and upset at home. Yet they are treatable conditions, which, if addressed early, save children from unnecessary emotional distress and save NHS resources by reducing expenditure on complications that may require expensive hospitalisation, such as kidney infections and chronic constipation/impaction. Too many NHS community treatment services in this area remain unfit for purpose. Much more work needs to be done to improve this situation and the new NICE accredited Paediatric Continence Commissioning Guide provides an important resource to address this deficiency.”

Dr Hilary Cass, President of the Royal College of Paediatrics and Child Health, said: "There is too much variation in the quality of services available to children with continence difficulties and it is worrying that so many childrenare not getting the level of service they deserve. This guide is much needed and I hope will mean more children get treated quickly and effectively.”

Fiona Smith, the Royal College of Nursing’s Adviser in Children and Young People’s Nursing, said: "Children, young people, and their families tell us that having access to a children’s continence nurse specialist is vitally important. Specialist nursing care can make a real difference to a child’s life, enabling them to take part in everyday activities such as attending school and playing sports. Providing such normality is crucial for minimising the long-term emotional and psychological impact of poor continence.

"Paediatricians value children’s continence nurse specialists as key members of the team who help improve management of continence issues and reduce the need for repeated hospital appointments and attendance at emergency departments.

"This guidance must lead to better commissioning of children’s continence services, including the children’s continence nurse specialists who provide vital care and support”

Rosalind Godson, Professional Officer, Health Sector, Unite the Union (CPHVA), said: "This guide has been written by those with expert knowledge and experience about children who have not yet managed to become clean and dry at the same time as their peers. This blights their start to school, and interrupts normal childhood experiences and friendships and can lead to more serious problems such as depression. All the evidence shows that these children can be helped and supported to become continent and thereby save resources from the NHS and social care services’ budgets. Commissioners for children’s services must make sure that they have this service in place.”

The guide has also been endorsed by the Royal College of Nursing (RCN), the Royal College of Paediatrics and Child Health (RCPCH) and the Community Practitioners’ and Health Visitors’ Association (CPHVA). It is freely available to all healthcare professionals on the Paediatric Continence Forum website.

Click here to find out more about the work of the Paediatric Continence Forum.