PCF: Campaigning for Better Services

What is the Paediatric Continence Forum?

The Paediatric Continence Forum (PCF) is an independent national campaign group which was set up in 2003. Its membership comprises key paediatricians and specialist nurses in this field, with formal representation from the charity Bladder & Bowel UK, Community Practitioners and Health Visitors Association (CPHVA), ERIC, The Children’s Bowel and Bladder Charity, the Royal College of Nursing (RCN), the Royal College of Paediatrics and Child Health (RCPCH) and the School and Public Health Nurses Association (SAPHNA).

The PCF has six commercial members who support its work. These are: Clos-o-MatColoplast UK Ltd, Essity (formerly SCA Hygiene Products Ltd), Ferring Pharmaceuticals LtdKimberly-Clark Europe Ltd, and Norgine Pharmaceuticals Ltd. You can find more about our commercial partners here.

What is the problem?

There are about 900,000 aged 5-19 years old in the UK who have a continence issue. This figure is likely to be an underestimate due to under-reporting and the stigma associated with these conditions. The most frequently occurring issues are bedwetting, daytime urinary incontinence, constipation and faecal incontinence or a combination of these.

Continence difficulties often occur at a sensitive time in a child’s emotional and physical development and impact negatively on health and wellbeing. They contribute to family stress and there are associated costs that have a disproportional impact on low income families.

Bladder and bowel conditions are treatable, yet availability of community-based NHS treatment services varies across the UK. Where there is no single integrated service treating all conditions, families have to travel to different clinics and see different healthcare professionals. This compromises treatment outcomes and increases costs to the NHS.

The PCF undertakes a Freedom of Information Survey every three years into the availability of community children’s continence services in the UK.

The Purpose of the PCF

The PCF advocates prevention, early detection and effective intervention. The PCF’s vision is that every child with a bladder or bowel issue is able to access an appropriately resourced integrated community-based service.

The Paediatric Continence Forum  aims to achieve its vision by increasing the awareness and understanding of Clinical Commissioning Groups and Health Boards, the Government, and health providing organisations that:

  • Every child and young person in the UK should have access to an well resourced, community-based, integrated,  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 all health and educational settings. It should also be clear who can refer to these services and how families and young people can contact referrers.

The work of the PCF

The full aims of the PCF’s are set out in our Strategic Plan for 2017-2021. How we work to achieve these aims is outlined in our Activity Plan for 2020,

To deliver the aims and objectives the PCF engages with parliamentarians, NHS England, Public Health England and national healthcare organisations to raise awareness of the needs of children and young people with bladder and/or bowel issues, and the need to improve the availability and quality of paediatric continence services nationally.

The PCF also responds to consultations, liaises with the Royal Colleges and contributes to the All-Party Parliamentary Group on Continence Care as a means to actively contribute to policies, clinical guidance and Government reports.