Stories & News Blog Campaigning for change for children with continence problems Established in 2003 by its current chair, Dr Penny Dobson MBE (the Founder and former director of ERIC), the Paediatric Continence Forum campaigns to improve services for children and teenagers with bowel and bladder problems. It is likely that if you are the parent or carer of a child with a bladder or bowel problem, or lived with one of these problems while growing up, you may have become frustrated with the care that you or a family member has received. Whether discovering that a local service only takes referrals from a certain age, or dispenses an inappropriate number of containment products for a child’s needs, there are likely to have been bumps in the road at some point or another. ERIC does an outstanding job at helping families who are facing challenges in accessing sufficient care, but ultimately paediatric continence services are something that the NHS and local authorities should be providing for every child who needs them. This is where the Paediatric Continence Forum (PCF) comes in. Ultimately paediatric continence services are something that the NHS and local authorities should be providing for every child who needs them. What is the Paediatric Continence Forum? The PCF raises awareness amongst politicians and other policymakers of the needs of this group of children and young people and campaigns to improve UK community-based NHS services. The PCF works with policymakers at a local and national level to promote its central aims: To increase awareness and understanding among commissioners, policymakers and practitioners of the need for an integrated, well-resourced, community-based paediatric continence service to be available to all children and parents nationally and on an equal basis; To improve existing services and encourage the establishment of new services where necessary; and To ensure paediatric continence is higher on the agenda of national policymaking as both a clinical and public health need. The PCF consists of 19 experienced and dedicated clinical and company members. Clinical members include paediatricians and specialist nurses who inform us on what is happening on the ground, while our commercial members contribute invaluable private sector experience, ensure that we are kept updated on their own activities in the sector and, importantly, sponsor the PCF’s work. In addition to ERIC and Bladder and Bowel UK, the PCF also has formal representation from the Royal College of Paediatrics and Child Health, the Royal College of Nursing, the School and Public Health Nurses Association, the Community Practitioners’ and Health Visitors’ Association and the research department of the University of Bristol. We are also fortunate to have over 120 clinical supporters and a new and fledgeling parent supporters group – both are important as our external radar and means of support. Why do we need to campaign for service improvements? In an era of continued financial restraint in the public sector, we are increasingly aware of children’s bladder and bowel services coming under increased pressure or services being cut altogether. This has become more difficult since when responsibility for commissioning (buying) school nursing services transferred from Public Health England to local authorities. This has meant that one of the first points of contact for families with concerns about their child’s continence, school nurses, are often being told they no longer need to give advice on continence – thus making it even more crucial for local health services to provide a dedicated paediatric continence services. In an era of continued financial restraint in the public sector, we are increasingly aware of children’s bladder and bowel services coming under increased pressure or services being cut altogether. The PCF’s own research has also highlighted that children’s bladder and bowel services are not universally provided across the UK. Our 2017 survey of paediatric continence services found that only 41.13% of areas commission these services, broken down into: 43.2% in England; 23.08% in Scotland; 14.29% in Wales; and 40% in Northern Ireland. This is a situation that clearly needs to change, especially as there has only been minimal/g> improvement to this UK figure since our previous survey in 2014. Dr Penny Dobson MBE and Nicholas Madden, Chair and Vice Chair of the PCF at a parliamentary drop-in session. How do we press for change? The PCF engages with a wide variety of policymakers who can influence service provision, including (but not limited to) MPs; MSPs; local authorities; government departments; Sustainability and Transformation Partnership (STP) leaders; NHS England; Public Health England; NHS RightCare; and NHS vanguards. While our discussions might be focused on a specific issue, there are three key things we always keep in mind when pressing for change: Make it clear – MPs or policy officials often have little knowledge of what a child may be going through, so we always make sure to explain what bladder and bowel problems are, how many children they’re thought to affect, and the impact this can have on their quality of life. We also consistently call for the same thing – integrated, well-resourced, community-based paediatric continence services – so there can be no doubt about what we want. Make it relevant – Particularly when meeting with MPs, we need to demonstrate exactly how what we want to talk to them about is relevant to them and their constituents. We often need to provide examples of what services are available in their area, or numbers of children and young people affected by bladder and bowel problems in their constituency. This is one of the reasons we put so much work into mapping service provision across the UK. Statistics, statistics, statistics – The PCF does a great deal of work to provide statistics to policymakers to support our arguments for integrated community-based services. Analysis by some of our clinical members has found that the cost of care for a child following an adequate pathway is £318, versus up to £2,118 for an inadequate pathway – demonstrating that significant savings can be found by providing the right services and giving children the right care. Dr Penny Dobson Get involved Ultimately, we’re not able to campaign for service improvements if we don’t know what the problems are or where they’re prevalent, so engagement with children and young people, families and healthcare professionals involved with paediatric continence is crucial. Please do join us in campaigning for these much-needed changes. There are several ways you can get involved: Join our parent or clinical supporters group by emailing [email protected] Look at our NICE-accredited Paediatric Continence Commissioning Guide to understand what good services should look like. Write to your MP or healthcare commissioners using the PCF’s local lobbying toolkit to highlight any shortcomings in your local services, and let us know if you manage to secure a meeting. For further information, please visit our website or email [email protected].