Author: Wilby, Norma
Date published: February 1, 2012
Services for children with continence problems are variable across the UK and often not comprehensive or properly integrated. With significant changes in commissioning underway and plans to introduce greater private provision of continence services it is especially important that policymakers are mindful of the need to maintain and improve standards in this area.
The Paediatric Continence Forum (PCF) is an independent group of healthcare professionals that engages with the government and healthcare organisations to improve paediatric continence services. Formed in 2003 the PCF has close links to the charities ERIC (Education and Resources for Improving Childhood Continence) and PromoCon. The group counts among its members 1 1 clinicians including paediatricians and specialist nurses from the Royal Colleges and CPHVA. The PCF receives financial support from seven sponsors and uses political consultants Portcullis Public Affairs.
It is estimated that one child in 12 suffers from continence difficulties, such as bedwetting, daytime wetting or constipation and soiling. These often occur at a sensitive time of emotional and physical development, causing low self-esteem and isolation, and contributing to bullying by siblings and peers.
The 2004 National Service Framework for Children, Young People and Maternity (NSF) (DH, 2004a) acknowledged that there are 'big gaps' in service provision for children with continence problems, which leads to inappropriate referrals and wasted resources. A survey of 800 NHS paediatric continence clinics, carried out by ERIC in 2006 and 2008 found that most were run by a maximum of two nurses and usually only on a part-time basis. Forty per cent of these clinics treated wetting only and not constipation or soiling.
Through Freedom of Information requests issued in 2011 approximately half of PCTs do not offer an integrated continence service wherein services are co-ordinated under the management of a paediatric continence specialist. A large majority do not offer a dedicated paediatric service in this area, and most have no plans to change services in response to the 2010 NICE guidelines for childhood constipation and nocturnal enuresis (NICE, 2010a; 2010b) and a commissioning guide on paediatric continence (NICE, 2010c). Co-ordinating the services provided by school nurses and health visitors with other primary and secondary providers was identified as a particular area that could be improved.
The PCF would like to see every PCT offer the four main paediatric continence services: bedwetting, daytime wetting, toilet training and constipation/soiling. It calls for these services to be joined-up and run by dedicated paediatric continence professionals, as recommended in recent NICE guidance.
The PCF successfully secured a section on continence within the Child Standard in the NSF (DH, 2004b). This was instrumental in securing the 2010 NICE guidelines for childhood constipation and nocturnal enuresis. The PCF also played an important role in encouraging NICE to publish the commissioning guide in the same year.
The group has built a network of supportive Parliamentarians who raise the issue of improving services with the government through letters, Parliamentary Questions, and Early Day Motions. The PCF also maintains regular contact with government departments directly to feed into consultations and shape policy affecting paediatric continence services.
The PCF advocates early detection and prevention in paediatric continence services. Members of the group have worked with the All-Party Parliamentary Group on Continence Care to produce an important guide entitled Cost-effective Commissioning for Continence Care (All-Party Parliamentary Group, 2011). The report shows that well-planned integrated provision is the key to meeting children's continence needs. It outlines how catching issues early would save children from unnecessary emotional distress and save the NHS resources by niinimising expenditure on complications such as kidney infections and chronic constipation/impaction, requiring acute hospitalisation.
ERIC runs two school-based campaigns, aiming to improve provision and access to drinking water and clean toilets during the school day. These are the 'Water is Cool in School5 and the 'Bog Standard' campaigns, gaining support from other organsations including the CPHVA and PCF. While staff facilities in schools must meet the high standards outlined in the Workplace Regulations, pupils' facilities must only meet the inferior standards in the School Premises Regulations. These are often unhygienic, poorly maintained and lacking in privacy. This causes children to avoid using the toilet, which leads to bladder and bowel problems or exacerbates existing issues. ERIC considers being able to access fresh water free of charge and good quality toilets, when needed are basic human rights of all pupils.
Unfortunately, the government is planning to remove the few specific provisions for pupils' facilities, widening this disparity. This will have a serious effect on children's health and educational opportunities. The PCF in conjunction with the organisations involved in the Bog Standard campaign (ERIC, CPHVA, School Councils UK and the British Toilet Association) are lobbying the government to rethink their plans to scrap regulations. The new regulations will be introduced in the spring so it is vital to act fast.
Many paediatric continence services are under threat due to proposed changes and cutbacks to the NHS since the new coalition government was elected in May 2010. The PCF will continue to play a crucial role in this environment in ensuring services are maintained and improved. The group is currently engaging with NICE on including paediatric continence services in the library of Quality Standards, so that new commissioners have a clear picture of what best practice looks like in this often neglected area of children's health. The group will also continue to feed into the discussion on how best to introduce a choice in the provision of continence services under Any Qualified Provider (AQP).
How to help
ERIC has set up an online petition calling for better regulations for children (www.petitionbuzz. com/petitions/bogstandard). You can write to your local MP and the Department for Education to raise the issue (contact info@ portcullispublicaffairs.com for more information).
It is imperative that paediatric continence has a high profile in the policy debate and this is where the PCF and partner organisations need the support of school nurses, health visitors and other community health practitioners. To learn more about the PCF's work in partnership with ERIC and the CPFWA, please visit ERIC at: www.eric.org.uk/ Campaigns
All-Party Parliamentary Group for Continence. (2011) Cost Effective Commissioning for Continence Care. London: APPG.
Department of Health. (2004a) National Service Framework for Children, Young People and Maternity Services: Core Standards. London: DH.
DH. (2004b) Children and Young People who are III. London: DH.
National Institute for Health and Clinical Excellence. (NICE) (2010a) Constiparìon in Children and Young People. London: NICE.
NICE. (2010b) Nocturnal Enuresis -The Management ofBedwetting in Children and Young People. London: NICE.
NICE. (2010c) Paediatric Continence Service: Commissioning Guide Implementation Guide (Implementation Tools). London: NICE.
Evidence submitted by the PCF to the Health Select Committee
www.publications.parliament. uk/pa/cm20 1011 /cmselect/ cmhealth/513/513vw56.htm
The Paediatric Continence Forum
www.eric.org. uk/Campaigns/ PaediatricContinenceForum
Department for Education resources on the proposed School Premises Regulations
BA(Hons), SCPHN1 PGCME, RN, SEN
Team Manager, School Nursing (East Cambridgeshire and Fenland), Cambridgeshire Community Services NHST
MBE DSci(Hon) University of Bristol
Chair, Paediatric Continence Forum