Health Select Committee – Primary care inquiry
Written evidence from the Paediatric Continence Forum
The Paediatric Continence Forum (PCF) is an expert group of patient representatives and healthcare
professionals which campaigns for improved services for children with continence problems (bladder
and bowel dysfunction) in all settings across the UK. 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. In 2014, the PCF published NICE-accredited guidance for the commissioning of
paediatric continence services, which can be found at www.paediatriccontinenceforum.org/resources.
According to UK-wide data, around one in 12 children have a paediatric continence problem, with the
National Institute of Health and Care Excellence (NICE) estimating in 2010 that 900,000 children
between the age of five and 18 in the UK suffer from idiopathic constipation, bedwetting and night time
wetting1. The figure in 2015 is likely to be higher, with academic research finding that the number of
referrals for constipation and enuresis are overtaking “traditional” health problems like asthma2.
Our submission focuses on commissioning and the quality and standards of care for patients, It outlines
that additional pressures are being placed on primary care clinicians like GPs as a result of many clinical
commissioning groups (CCGs) failing to commission community-based paediatric continence services,
as well as action by local authorities to withdraw school nurse support for children with continence
problems. The effect of this is that GPs are being made to carry out work that they are not qualified to
do, that could easily be carried out in the community. The impact on GPs is an increased workload, with
high-cost referrals to tertiary care impacting on NHS finances and the taxpayer, and an inadequate
quality of care impacting on patients and their families.
The ideal scenario: a community-based paediatric continence service
As outlined in the Paediatric Continence Commissioning Guide, there are three service levels for
children exhibiting continence problems:

Level 1 involves the provision of early stage intervention such as advice and support to promote
healthy bladders and bowels, resulting in a reduction of the risk of problems such as
constipation developing or getting worse. GPs, health visitors and school nurses typically carry
out this service. Should problems persist, referral should be made to Level 2.

Level 2 involves the assessment and treatment of children and young people with daytime
wetting and those with special needs and more complex-bladder bowel problems. The
NHS Modernisation Agency (2003) Good practice in paediatric continence services – benchmarking in action.
London: Department of Health
2 Thompson, E. Todd, P. Ni Bhrolchain C. (2013) “The epidemiology of general paediatric outpatients referrals:
1988 and 2006” Child Care Health Dev. 2013 Jan;39(1):44-9
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assessment is more in depth and includes a full run through of the patient’s health and social
history, as well a physical examination – abdominal, lower limb neurology and an ultrasound
assessment of bladder emptying. This should be carried out by a community paediatric
continence service led by a paediatric continence adviser. This is a specialist continence
service that should be commissioned by a CCG, however most CCGs do not commission this
service. Depending on the outcome of the assessment, referral may be made to Level 3.

Level 3 involves more specialist interventions, and is carried out by paediatricians in the
community or specialist secondary care.
Commissioning arrangements like these are advantageous as they allow children with minor and easily
rectifiable issues to be seen in a cost effective manner, and only those with more complex problems to
be subject to specialist intervention. As the roles are clearly defined, primary care clinicians like GPs
are well aware of their role and should they not be able to rectify the problem, they can refer patients to
Level 2. Patients also receive better quality of care as they are being dealt with in an appropriate
manner.
The reality: poor commissioning impacting on GP services and the quality of patient care
Research conducted by the PCF in the summer of 2014 found that this system is rarely in place across
England. The PCF found that only 36% of CCGs commissioned all four paediatric continence services
(nocturnal enuresis, day time wetting, constipation/soiling and toilet training) and product provision, with
only 26% of all CCGs commissioning their service in an integrated manner and just 20% of services
being led by a paediatric continence adviser.
Poor commissioning by CCGs can have a significant impact on primary care. Where there is no Level
2 community-based paediatric continence service, the onus of assessment and treatment falls to GPs.
As GPs are short of time and training, they normally issue nappies or refer onto expensive treatment in
tertiary care, which impacts on the quality of care that patients should receive. The average cost of an
outpatient attendance being £108 (£215 for specialist paediatric urology), with A&E attendance costing
£114 and a day case costing £693. This compares to a top band 6 or mid band 7 nurse costing £17.66
per hour before any additional costs,
Greater strain is also being placed on GPs due to a reduction in the provision of Level 1 services. Since
the transfer of commissioning responsibilities for school nurses to local authorities in April 2015, many
local authorities have told school nurses to no longer provide continence care, meaning fewer school
nurses to identify paediatric continence problems and carry out early stage treatment. Severe cuts to
public health budgets as well as the transfer of the responsibility for health visiting services from October
2015 is likely to provide GPs with further problems. This strain is likely to be passed onto patients, who
will experience a worse quality of care than they would have before.
The quality and standard of care that patients receive is being hindered by a lack of access by GPs to
clear care pathways. Research by the PCF in March 2015, which asked 48 of the best performing CCGs
(those responding to other research in 2014 that they commissioned all four paediatric continence
services and product provision in a joined-up manner) resulted in just 12 (25%) providing the PCF with
a care pathway - none were determined by the PCF to be of suitable quality
Solution: better commissioning using the Paediatric Continence Commissioning Guide
The PCF believes that CCGs should commission a paediatric continence service in line with the model
in
the
Paediatric
Continence
Commissioning
Guide
(available
at
www.paediatriccontinenceforum.org/resources) to help ensure that commissioning arrangements
alleviate pressure on GPs and provide better financial outcomes for the NHS in addition to better quality
of care. A revised version of the Commissioning Guide will include a sample care pathway, developed
as part of the Department of Health funded ERIC Nurse Project, which can be adapted for use by all
CCGs. This will help ensure that primary care clinicians like GPs are properly equipped to refer patients
to the correct service where they can receive the appropriate treatment.
CCGs must be made aware that commissioning a new paediatric continence service will save money
in the medium and long term and involves few short term expenses. Additional resources to help CCGs
understand the advantages of commissioning a paediatric continence service, as well as advice on how
easy it is to do is also available by accessing the link above.
The Paediatric Continence Commissioning Guide has been accredited by NICE and endorsed by the
Royal College of Paediatrics and Child Health, the Royal College of Nursing and the Community
Practitioners’ and Health Visitors’ Association. It was developed in close coordination with clinical
experts, with feedback from patient groups like ERIC and PromoCon.