Paediatric Continence Forum response to Labour policy consultation
Health and Care: Whole-person care
Introduction
The Paediatric Continence Forum is a national group of patient representatives and healthcare
professionals which campaigns for improved services for children with continence problems
(bladder and bowel dysfunction). Established in 2003, it works closely with the national charities
ERIC (Education and Resources for Improving Childhood Continence) and PromoCon (Promoting
Continence through Product Awareness) and with representation from the Royal College of
Paediatrics and Child Health, the Royal College of Nursing and the Community Practitioners’ and
Health Visitors’ Association. One of the key goals of the PCF is for every area in the UK to have a
proper community-based integrated paediatric continence treatment service, led by an expert
paediatric continence professional, with a clear system of referral and care pathways across
primary and secondary NHS care, education and social services.
A 2003 estimate by the Department of Health suggested that bladder and bowel dysfunction
affected about 900,000 children and young people out of a population of 8,500,000 in the UK. Of
the latter, approximately 800,000 have some form of physical or learning difficulty.
The PCF’s response
The PCF welcomes the opportunity to respond to this manifesto policy document. We support
Labour’s overarching aim of improving health outcomes for children and their parents.
Over the past year the PCF has been developing commissioning guidance for paediatric continence
services – a resource, currently undergoing accreditation by the National Institute of Health and
Care Excellence (NICE), to assist commissioners, clinicians and managers to deliver integrated and
evidence-based community paediatric continence services. Research undertaken by the PCF in 2011
showed a clear need for assistance in establishing such services. It was found that three quarters of
primary care trusts (PCTs) did not offer dedicated children services for bedwetting, daytime
wetting, toilet training and constipation/soiling, with 49% of PCTs offering these services in a
manner which was not “joined up” (i.e. one services for all four of the aforementioned problems).
Early findings from follow up research conducted this year found that little progress has been
made, with the services that Clinical Commissioning Groups (CCGs) commission still being
fragmented.
Poor quality services can lead to children and young people being hospitalised for problems such as
faecal impaction and urinary and kidney problems – not only does this impact on the quality of life
of children and their parents, it costs the NHS more money in the long-term. As such, we believe
that a future Labour government should seek to ensure that all CCGs commission paediatric
continence services which are joined up and led by an expert paediatric continence
professional, with a clear system of referral and care pathways across primary and secondary
NHS care, education and social services. In particular, we believe that the commissioning
guidance that has been produced by the PCF, and accredited by NICE, is best placed to assist
commissioners in establishing these services.
Conclusion
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The PCF believes that the most effective way – both in cost and practice – to improve the quality of
paediatric continence services is to ensure that services and joined up and that referral pathways
ensure that children with continence problems are treated early and effectively. We believe that
The guidance produced by the PCF will be particularly helpful to CCGs when commissioning
their services, and we would be delighted to provide more detail on this to the Labour Party.
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