Resources and Links

Paediatric Continence Commissioning Guide

The PCF has developed a tool to support the commissioning of integrated, community-based, paediatric continence services, called the Paediatric Continence Commissioning Guide.

The Paediatric Continence Commissioning Guide has been accredited by the National Institute of Health and Care Excellence (NICE), and 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).

Initially published in September 2014, it has been updated following its interim review in 2015. The updated document can be found here.

Comments and questions relating to the Guide should be addressed to James Wand at paediatriccontinenceforum@whitehouseconsulting.co.uk.

An examination of paediatric continence services across the UK

The PCF conducts a Freedom of Information survey every three years of all CCGs and Health Boards in the UK, to understand the quality of the paediatric continence services provided.

The findings of the most recent survey were analysed in the PCF’s report An examination of paediatric continence services across the UK, published in August 2017. The results found that 41.3% of CCGs and Health Boards provided all four paediatric continence services and product provision, compared with 38% in 2014. Despite historically stronger provision in the devolved nations, Northern Ireland, Scotland and Wales all experienced deterioration in provision. England was the only nation to demonstrate an improvement to service provision, with 43.2% of CCGs providing services, but even these figures leave significant room for improvement.

Following the publication of this report, the PCF is pushing for three key recommendations to be implemented across the UK:

  • Every child and young person in the UK should have access to an integrated, community-based, well-resourced paediatric continence service.
  • Health services and local authorities should work collaboratively to ensure that these services are available in every community, recognising that it is their responsibility to work together to provide them, despite recognised clinical and financial pressures.
  • Information about the provision of local services should be readily available in health and educational settings – i.e. GP practices and schools. It should also be clear who can refer to these services and how families and young people can contact referrers, e.g. GPs, school nurses and health visitors.

To read the full report, please click here.

In 2017, the PCF also conducted a Freedom of Information survey on local authorities for the first time, asking 205 and receiving responses from 191. The findings show that only 15% of local authorities had a dedicated continence clinic, 54% said that they did not provide a clinic and 20% did not hold the information. These findings further evidence the significant disparities in provisions across the UK.

A summary of the findings can be found here.

Children’s continence care: sub-optimal pathway versus optimal pathway

In addition to the Commissioning Guide, the PCF has compiled a case study “Toby” consisting of  a sub-optimal care pathway without referral to a community-based paediatric continence service and an optimal care pathway when this service is available. This was a joint exercise between June Rogers MBE and Davina Richardson, Bladder and Bowel UK; Alison Wileman, Chair of the RCN’s Continence Forum; and Dr Penny Dobson MBE, Chair of the Paediatric Continence Forum.

“Toby” is a boy with persistent bedwetting and constipation. It highlights that following a sub-optimal pathway could incur costs of up to £2,118, while following an optimal pathway would only incur costs of £318 – demonstrating the value for money that can be achieved by properly resourcing an integrated, community paediatric continence service.

Bladder & Bowel UK have published a second case study  “James” who has bowel problems and delayed toilet training. This case study demonstrates savings of £17,000 by following an optimal care pathway.

Given the national initiatives being driven by NHS England – such as efficiencies stemming from the Carter Review of productivity in NHS hospitalsNHS RightCare and the Leading Change, Adding Value framework – it is vital that organisations such as the PCF are able to provide evidence of the cost-effectiveness of providing community-based services, to ensure these services are commissioned and run appropriately. The PCF is currently in touch with Professor Matthew Cripps, National Director, NHS RightCare to see if the above evidence can be used as a good example of contrasting pathways to promote their Sustainability and Transformation Plan.

For further information on these care pathways, please contact the PCF at paediatriccontinenceforum@whitehouseconsulting.co.uk.

Minimum Standards for Paediatric Continence Care in the UK

The PCF has created a set of Minimum Standards for Paediatric Continence Care in the UK, on behalf of the United Kingdom Continence Society (UKCS). The standards are intended to complement the Minimum Standards for Continence Care in the United Kingdom produced by the Continence Care Steering Group in 2014, for the UKCS.

Guidance for the provision of continence containment products to children and young people

Bladder and Bowel UK (formerly PromoCon) has led in the creation of a consensus document on the provision of continence containment products to children and young people, to ensure that all children and young people who have not been toilet trained, or have urinary or faecal incontinence, undergo a comprehensive assessment and have access to an equitable service. The creation of the document involved several PCF members, including Bladder and Bowel UK; ERIC: The Children’s Bowel & Bladder Chairty; the Royal College of Nursing; and the School and Public Health Nurses Association (SAPHNA).

The PCF is pleased to fully endorse this document, which can be found here.

Local Lobbying Toolkit

The PCF has created a local lobbying toolkit to take parents and carers of children and young people with continence problems through the process of lobbying for improvements to NHS paediatric continence services. The toolkit can be used to contact your local MP, CCG or Healthwatch organisation to pressure for changes to either local or national policy. The toolkit can be found here, and if you use it to contact one of your local organisations, please do get in touch by emailing paediatriccontinenceforum@whitehouseconsulting.co.uk.

NHS England Excellence in Continence Care Commissioning Framework for adult and child continence services

PCF members are working as part of the NHS England Excellence in Continence Care Programme Board to develop a framework for the commissioning of child and adult continence services. This document will be advisory and acts as recognition that NHS England understands that continence services must be improved across the country.

NHS England’s guidance was launched in July 2018 and can be found here.

Briefing on the need for better education and training for professionals involved in paediatric continence care

The PCF has produced this briefing on why training on paediatric continence needs to be improved for nurses, health visitors, GPs and other medical professionals. This can be accessed here.

Information leaflet on the PCF

The PCF has also produced on information leaflet outlining our aims, achievements and membership, which can be used to highlight our work. Please download it here.

Other resources