Written evidence from the Paediatric Continence
Forum (COM 59)
EXECUTIVE SUMMARY
— Continence (bladder and bowel) problems
affect about one in 12 children and are associated with bullying,
loss of self-esteem and family stress, including parental punishment.
Bedwetting was a symptom of maltreatment in the tragic death of
Victoria Climbie, which was not picked up by healthcare staff.
— Services need to be commissioned to treat
bladder and bowel problems as one integrated service (usually
community-based), each with a trained paediatric continence adviser
as "lead". This would save money-by preventing unnecessary
A&E and hospital admissions—and providing better outcomes
for families.
— We welcome the forthcoming NICE Commissioning
Guide on paediatric continence services. This will support the
implementation of two NICE Guidelines, on; constipation in children
(published May 2010) and childhood nocturnal enuresis (bedwetting)
due to be published on 27 October 2010). There is a role for the
Commissioning Board to encourage take up of these Guides at local
level.
— Physical (health), social, psychological
and educational elements require a "joined up" approach
for effective and cost effective treatment for these conditions.
— There should be an identified "lead"
allocated within each GP consortium to liaise with each paediatric
continence service "lead"
— Early identification and effective treatment
would prevent additional problems developing and reduce the number
of families attending outpatient or A&E Departments.
— Improvements to water and toilet provision
and access in schools would also prevent bladder and bowel problems
from developing.
— There needs to be a Quality Standard
on bladder and bowel care in children and young people.
ABOUT THE
PAEDIATRIC CONTINENCE
FORUM
1. The Paediatric Continence Forum (PCF)
is a national group of patient representatives and healthcare
professionals, supported by industry members, concerned about
the poor state of services for children with continence (bladder
and bowel) problems. The Forum came together in 2003 to discuss
ways forward with policy-makers and the NHS around the formation
of the Children's National Service Framework (2004). It works
closely with the national charity ERIC (Education and Resources
for Improving Childhood Continence).
ABOUT BLADDER
AND BOWEL
PROBLEMS IN
CHILDREN
2. Bladder and bowel problems affect about
one in 12 children and young people (ERIC 2008) yet are often
hidden, due to their social stigma. They can cause children to
be bullied at school, result in loss of self esteem—and
cause stress to families. Research indicates that about 22% parents
punish their children for wetting or soiling episodes
(Butler 2005)[88]
and there is a link with child abuse (as in the case of the late
Victoria Climbie). They are mostly treatable conditions.
3. This is an area of child health in which
coordination between health, education, psychology and social
services is particularly essential. Yet the 2004 National Service
Framework (NSF) acknowledged that there were "big gaps in
service provision for children with continence problems, which
lead to inappropriate referrals and wasted resources. It recommended
"an integrated, community-based paediatric continence service,
informed by Good Practice in Paediatric Continence Service and
ensures that accessible, high quality assessment and treatment
is provided to children and their parents/carers in any setting"
(NSF 2004 Standard 6 p 30).
The above policy has been confirmed by "Achieving
Equity and Excellence for Children" with a holistic approach
to healthcare.
4. A survey of 800 NHS paediatric continence
clinics in the UK carried out by the national charity ERIC (Education
and Resources in Improving Childhood Continence in 2008[89]
and recent service case histories, indicate that community-based
paediatric continence services remain fragmented and inadequate,
with few properly trained paediatric continence healthcare "leads".
The situation is being further decimated with PCT savings. This
means that children and young people who have more than one continence
condition (eg daytime wetting or soiling, as well as bedwetting")
are being passed "from one service to another", with
long delays and a compromised treatment programme.
5. The ERIC research showed that most continence
clinics were community-based and run by a maximum of two nurses,
usually on a part-time basis; 40% of these clinics treated wetting
only and not constipation/soiling. Only 5% dealt with children
with physical disabilities and only one in three said that they
had easy access to a paediatrician.
6. A key problem is that integrated paediatric
continence services are not being properly commissioned. This
is due to lack of knowledge of the needs of this group of children
at commissioning level (particularly a lack of appreciation of
how continence difficulties radically affect children and their
families—and the effective treatment available)—and
a lack of understanding of what a good services should comprise.
7. In addition, many children who have specialised
bladder and bowel surgery are reliant upon the tertiary centres
sending out specialist nurses to complete follow up as there is
no specialist nurse locally. Domiciliary visits are being reduced
and this leaves children with no regular follow up, leaving them
vulnerable to post operative complications particularly if they
have to catheterise. This can result in infection, reduced kidney
function and the need for further high tech intervention.
8. Research by Dr K Price, Sheffield Children's
Hospital 2003 found that a quarter of children attending paediatric
outpatient clinics had problems relating to constipation—pre-dating
the increased prevalence of breakfast clubs and extended school
day,—www.bog-standard.org/adults_survey_results.aspx
This problem could be vastly reduced by improved
continence treatment services and improvements to water and toilet
facilities and access in schools (cross reference to the work
of ERIC/ PCF and the Department of Education in the submission
of draft amendments to the 1999 School Premises Regulation May
2010).
9. There is one published NICE guideline
in this area of child health ( NICE Guideline on constipation
in children, published May 2010). A second NICE guideline, on
nocturnal enuresis (bedwetting) is due to be published on 27 October
2010.
10. The PCF welcomes the publication of
the first national Commissioning Guide in this area of child health
(due to be published early 2011) to complement the publication
of the two above NICE guidelines. However there needs to be energy
and impetus from government to encourage their take-up at local
level.
11. The Department of Health has recently
published a Care Pathway (Exemplar) on paediatric continence:
The National Service Framework for Children, Young People and
Maternity Services—Continence issues for a child with learning
difficulties (Published 9 September 2010).[90]
The PCF welcomes the opportunity to respond
to the following consultation questions:
CLINICAL ENGAGEMENT
IN COMMISSIONING
How will commissioners access the information
and clinical expertise required to make high quality decisions
about the shape of clinical services?
12. For paediatric continence commissioning,
there will be a NICE Commissioning Guide, which will signpost
and provide topic-specific information on key clinical and service-related
issues to consider during the commissioning process. The guide
will contain a commissioning and benchmarking tool that can be
used to estimate and inform the level of service needed locally,
as well as the cost of local commissioning decisions.
13. For guidance on clinical practice on
paediatric continence there are two NICE Guidelines: Childhood
Constipation (published May 2010) and Childhood Nocturnal Enuresis
(to be published 27 October 2010)
It is essential that GP consortia know about
these resources and use them. It could be part of the role of
the NHS Commissioning Board to enable relatively low volume services,
such as paediatric continence, be effectively commissioned.
How will GPs engage with their colleagues within
a consortium and how will consortia engage with the wider clinical
community?
14. Most paediatric continence services
are run by nurses ( school nurses and health visitors) and others
are led by community paediatricians. There is usually a "lead"
person for each service. The national charity ERIC (Education
and Resources for Improving Childhood Continence) has details
of most paediatric continence services nationally.
There should also be an identified "lead"
for paediatric continence within each GP consortium
ACCOUNTABILITY FOR
COMMISSIONING DECISIONS
15. There is very little "parent power"
in this area of child health, as parents usually want to protect
their child's "invisibility" due to the associated stigma—and
the risk of their child being bullied at school. The charity ERIC
has a weekday national Helpline—and interactive website,
which provide the means to gauge the views of parents.
INTEGRATION OF
HEALTH AND
SOCIAL CARE
16. It is essential that service models
are commissioned that provide good "join-up" between
health, social care, psychological services and education. For
example, a treatment plan may require a toileting programme within
the school, there may be associated psychological problems that
will need to be addressed.
October 2010
88 Butler R Child: Care, Health & Development.
31,6,659-667. Back
89
Published within ERIC Update journal May 2008. Back
90
Department of Health: National Service Framework for Children,
Young People and Maternity Services. (2010) Continence Issues
for a Child with Learning Difficulties. Available from: www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps Back
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