Department for Education – SEND funding
Written evidence from the Paediatric Continence Forum
The Paediatric Continence Forum (PCF) is a national group of patient representatives and healthcare
professionals which campaigns for improved services for children with continence problems (bladder
and bowel dysfunction) in all settings. 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. The PCF has recently published NICE-accredited guidance for the
commissioning
of
paediatric
continence
services,
which
can
be
found
at
www.paediatriccontinenceforum.org/resources.
The PCF actively supports The Right to Go – a campaign organised and run by ERIC - which calls on
schools and the Government to ensure that all educational settings have appropriate policies and
procedures in place to support children with continence problems, and to provide school toilets which
are safe, hygienic and well-maintained.
In 2010, the National Institute for Health and Care Excellence (NICE) estimated that 900,000 children
and people aged between 5 and 18 years in the UK were affected by idiopathic constipation,
bedwetting and daytime wetting 1. The figure in 2015 is likely to be higher, with research finding that
the number of referrals for constipation and enuresis overtaking “traditional” health problems like
asthma2.
The PCF believes that changes to SEND funding should recognise that children with bladder and bowel
problems require access to high quality toileting facilities, and that local authorities and the
Education Funding Agency must consider this when distributing funds for capital investment.
Disparity on assessment between different local authorities
1.1 Research conducted by the PCF over the summer of 2014 found an uneven distribution in the
quality and provision of paediatric continence services across the whole of the UK, and particularly
in England. We found that in many areas, clinical commissioning groups did not commission a
paediatric continence service and did not have care pathways in place for children identified through
universal health services, such as school nurses. Consequently, there is a degree of variability in the
management of these conditions amongst children, which can have a significant impact on their
school life. This is particularly the case for children with SEND, as there is a well-recognised
correlation between disability and continence problems.
1
National Institute for Clinical Excellence (2010) Paediatric Continence Commissioning Guide.
London: National Institute for Clinical Excellence
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
1
1.2 We believe that the Department for Education must consider that some local authorities
containing schools that offer specialist/non-specialist provision will need more funding than others
to adequately accommodate children with continence problems, given that not all children receive
the same level of care in the community. The Department for Education can use SEND funding to
address this disparity in part, as well encouraging local authorities to engage with CCGs to improve
the provision of their continence services.
1.4 The PCF has also learned that there are disparities in the way some individual schools interpret
children’s needs which they may see, incorrectly, as non-educational, with some schools fully
supporting children with continence issues and other schools saying it is the responsibility of the
parent. The consequence of this is that schools may inaccurately report their needs to local
authorities, and this can affect funding for conditions like continence problems. The Department for
Education should make all settings aware of the impact that continence problems can have on
children attending educational settings.
Contributions from other budgets
2.1 We would like to note that if an individual is receiving NHS services to assist with their continence
problems, it is essential that these are available throughout their education. It should not be the
case that if a child is receiving treatment for their continence problems from the NHS, then this is
enough. Funding must also be provided to educational settings to assist them in helping the child to
manage their condition, either through providing additional support or facilities.
Criteria and approaches by local authorities and the Education Funding Agency to
allocating capital funds for specialist provision
3.1 Both local authorities and the Education Funding Agency must be aware that there is a recognised
link between the number of children with SEND and those exhibiting bladder and bowel problems 3.
Given the costs of accommodating these children through specialist provision, such as the
development of adequate toilet facilities and additional staff such as occupational therapists, they
must ensure that there are appropriate capital funds for these to be in place.
3.2 The need for special toilet facilities has been recognised by the Government in the past. Guidance
published by the Department of Health, Good Practice in Continence Services, states that local
authorities must recognise the need for unrestricted access to toilet facilities, including one extended
cubicle with a wash-basin per school for children with disabilities, children who need to selfcatheterise and so on4.
3.3 Moreover, guidelines published by the Department for Education in 2007 recognise that there are
a number of common failings in existing school provision and include strategies for the effective
design, maintenance and operation of toilets5. The PCF believes that these guidelines should be
considered by both the Education Funding Agency and local authorities when allocating capital funds.
3
National Institute for Clinical Excellence (2010) Paediatric Continence Commissioning Guide.
London: National Institute for Clinical Excellence
4
Department of Health (2000) Good Practice in continence services. London: Department of Health
5
Department for Education (2007) Standard specifications, layouts and dimensions: Toilets in
schools. London: Department for Education
2
What data do local authorities collect and hold on current capacity and forecast pupil
numbers for different types of specialist provision?
4.1 Local authorities may encounter problems forecasting specialist provision for children with
continence problems as evidence suggests that the number of children with identified continence
problems tends to be underreported6. We have identified that the reason for this is in part due to
inadequate data collection by health services, as a result of limiting coding for a variety of health
conditions, but continence in particular. In order to more accurately forecast the number of pupils
with continence problems who require specialist provision, local authorities must engage with health
services to encourage better data collection.
Summary of recommendations
Below is a series of recommendations by the PCF to the Department for Education to ensure a fairer
allocation of SEND funding for children with continence problems:




The Department for Education should provide additional funding for local authorities where
the provision of continence services is less than the required level.
The Department for Education should make all settings aware of the impact that continence
problems can have on children attending educational settings
The Education Funding Agency and local authorities should be aware of the cost of ensuring
educational settings are well placed to deal appropriately with continence problems, and
provide funding accordingly.
Local authorities should work with local health services to ensure that health services record
data on SEND and medical conditions, so that accurate forecasts can be made of specialist
provision.
6
National Institute for Clinical Excellence (2010) Paediatric Continence Commissioning Guide.
London: National Institute for Clinical Excellence
3