The Paediatric Continence Forum (PCF) has launched a lobbying toolkit for parents and carers to improve children's continence services.

The idea for the toolkit emerged following research showing less than half of the Clinical Commissioning Groups (CCGs) and Health Boards in the UK commission the four main children's continence services (toilet training, bedwetting, daytime wetting and constipation and soiling) and only 27% commission 'joined up' services.

The PCF, a UK-wide campaigning group made up of healthcare professionals and patient representatives, has designed the toolkit to help parents and carers of children and young people with bowel and bladder problems to campaign for improvements to NHS paediatric continence services at a local or national level.

At a time when public health budgets are undergoing significant cuts, leading to stripped back school nursing and health visiting services and increased pressure on secondary care, it is crucial that health bodies follow guidance to provide the best possible service to children and teenagers with toileting problems.   

The lobbying toolkit will help parents and carers contact MPs, Clinical Commissioning Groups (CCGs) and Health Boards to draw their attention to this issue and encourage the use of guidance to improve services.  

The toolkit provides information on:

  • how to request a meeting with your MP

  • a brief outline of what you can expect to achieve from a meeting

  • a briefing note that you can give to your MP containing more information.

The toolkit also outlines ways of approaching the following key organisations to ask for improvements to paediatric continence services in your area:

  • local commissioners of paediatric continence services (i.e. the people who decide what services are provided)

  • your local Healthwatch organisation (the consumer healthcare champion).

If you are the parent or carer of a child or teenager with a toileting problem and you have experienced poor care, we strongly advise you to use the toolkit to make your voice heard by those who have the power to make change happen. Click here to download the toolkit.