Commissioning for children with bladder and bowel problems

9 February 2017

Commissioners play a key role in the lives of the 1 in 10 children and young people in this country with bladder and bowel (continence) problems (1). This is because difficulties such as bedwetting, daytime wetting and constipation/soiling can be prevented – or solved at an early stage - through properly set up and funded nurse-led community paediatric continence services.

Good community-based services also prevent expensive and inappropriate referrals to secondary care – or parents travelling to A&E departments with an unwell child with severe constipation or a urinary tract infection.

The national campaign group, the Paediatric Continence Forum (PCF) has published and led a range of practical resources and tools to support commissioners set up new or strengthen their existing paediatric continence services.

It is often thought that continence difficulties affect only the very young or the very old – but we know that it is a problem for children and young people of all ages. The associated stigma and embarrassment cause children to suffer feelings of isolation and of being “different”.  There is also a significant link with bullying and parental punishment, even abuse (2).

These are good reasons for making sure that paediatric continence services are locally based and accessible for families, enabling early assessment and treatment. This makes sense financially as well as clinically.  Services that are integrated have better clinical outcomes than single symptom clinics, particularly as these children are often multi-symptomatic (3).  Young people also tell us about the importance of a trusting relationship with their clinician and how a disjointed service negatively affects them (4).

An integrated paediatric continence service defined

  • One service for children and young people with all four wetting and soiling problems – bedwetting, daytime incontinence, constipation/soiling, plus toilet training concerns
  • Treats all children and young people from birth to 19 years, including those with learning difficulties and physical disabilities 
  • Run by a multi-disciplinary team and is led by a paediatric continence nurse specialist 
  • Has clear and effective referral and care pathways to secondary care and to education, CAMHS and to social services.  

Despite the arguments for integrated services the national picture is fragmented and increasingly under pressure, particularly as a result of the 2015 transfer of school nurses, and then health visitors, from public health to local authority control.  Research carried out by the PCF in 2014 showed that only 40% of clinical commissioning groups and health boards across the UK commission all four continence problems – and only 27% were “joined up”. A repeat survey will be carried out this year.

Resources for commissioners

Paediatric Continence Commissioning Guide (NICE  accredited), Paediatric Continence Forum (2014, updated 2015). Includes what a good, integrated, community-based service looks like and what needs to be done to put this into practice

Needs Assessment Report on Continence The National Child and Maternal Health Intelligence Network (ChiMat), with prevalence data by CCG and LA, service reports and rates of unplanned hospital admissions for constipation and urinary tract infections. 

Paediatric Continence Forum: Provides advice and guidance. Contact: rhiannon.sanders@whitehouseconsulting.co.uk  Tel: 020 7463 0697 website: www.paediatriccontinenceforum.org

(1)   The prevalence of 1 in 10 is based upon a NICE accredited figure of 900,000 children in the UK with continence problems. PCF Commissioning Guide 2015

(2)   NICE (2010a). Clinical Guideline CC99: Constipation in Children and Young People. www.nice.org.uk/guidance/cg99

NICE (2010b). Clinical CCG 111: Bedwetting in under 19s /www.nice.org.uk/guidance/cg111

(3)    Royal College of Physicians (2010). National Audit of Continence Care www.rcplondon.ac.uk/resources/national-audit-continence-care

(4)    Whale K, Joinson C, Cramer, H, Wright A. (2016) Young people’s experiences of continence clinics. Royal College of Paediatrics and Child Health Abstracts of the Annual Conference. Archives of Disease in Childhood. 101 (1): A197

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