1. Links PCF Website: http://www.paediatriccontinenceforum.org/
For PCF resources:
Continence Needs Assessment:

2. Issues in Paediatric Continence Services
Nicholas Madden
Vice-Chair, Paediatric Continence Forum
Consultant Paediatric Surgeon/Urologist (retired)

3. PCF Origins 2003 Founding director of ERIC: Dr Penny Dobson
Increase political awareness of the needs of children and young people with continence problems
Improve NHS services

4. The Paediatric Continence Forum PCF
Membership includes:
Specialist Nurses, Paediatricians
And Representatives of:
Royal College of Nursing
Royal College of Paediatrics and Child Health
Community Practitioners and Health visitors Association
School and Public Health Nurses’ #association
Commercial Members
Secretariat: Whitehouse Consulting

5. Methods Lobbying MPs and Peers Responding to documents: Engage with:
Parliamentary questions, drop-ins, APPG
Responding to documents:
NICE, CQC, government departments
Engage with:
Clinical and parental supporters
ERIC, Bladder & Bowel UK etc
Government departments etc
You

6. VISION: Excellence in Continence Care
One community- based service
for children AND young people
Toilet training, daytime wetting, bedwetting, constipation and soiling
(products)  
Treatment for all children and young people
from birth to 19 years old
including those with learning difficulties and physical disabilities
Leadership by a paediatric continence nurse specialist
Input from a multi-disciplinary team  
Clear and effective referral and care pathways to:
Secondary and tertiary care,
Education,
Child and Adolescent Mental Health Services (CAMHS)
Social services

7. Publications Paediatric Continence Commissioning Guide
NICE accredited
ChiMat: Continence Needs Assessment
National Child and Maternal Intelligence Network. PHE
Excellence in Continence Care
NHS England
Minimum Standards in Continence Care
UKCS/PCF
Lobbying toolkit
Freedom of information 2011, 2014, 2017

8. Current Issues School Nurses
Poor community paediatric continence Services: F.o.I.
Costly inappropriate referrals to 2ry/3ry care
ChiMat: 2018/9
Daytime wetting guideline

9. School Nursing
Public health responsibilities transferred to local authorities
April 2015 – School nurses, October 2015 – Health visitors
Continence is defined as a clinical rather than public health need
Maximising the school nursing team contribution to the public health of school aged children (DH, PHE 2014) lists obesity reduction, pregnancy prevention, STIs, school absences etc. as priority for school nurses. Continence is not listed.
Pressures on LA and PHE funding
Resulting in
Local authorities removing continence from the list of school nursing duties
School nursing services integrated into a single 0-19 healthy child service
A gap in continence services for children and young people

10. Freedom of Information 2017
98.3% Response
231 of 235: England -4, Scotland -1
Commission 5 paediatric continence services:
Toilet training, enuresis, daytime wetting, constipation/soiling, products
Integrated service
Plans to commission new or review service
Use of Paediatric Continence Commissioning Guide

11. Commission 4 services – and products %

12. Commissioning integrated services 2014 2017

13. Services led by a paediatric continence advisor 2014 2017

14. Plans To Review services: 38.8% (43.5%)
To Commission New Services: 10.8% (13.5%)
Commission 5 services:
2014: 38% : 41%
>20% Poor services and NO PLAN

15. Aware of and use the Paediatric Continence Commissioning Guide,

16. The epidemiology of general paediatric outpatients referrals: 1988 and Child: Care, Health & Development. 39(1):44-9 E. Thompson, C. Ni Bhrolchain, Wirral University Hospital
1988
2006
Referral Rates per 1000 children per year (<15y)
15.5
25.7
Most common reasons for referral %
Asthma
(15%)
Heart murmur
(13.8%)
Constipation (10.5%)
Enuresis
(7%)
Per 1000 children: Asthma = 2.32, Heart = 2.14, Constipation = 2.7, Enuresis = 1.8

17. Inappropriate Referrals
Scarlett et al, ICCS 2015
300 of 940 referrals were continence related
33% were considered to be ‘inappropriate’
primary nocturnal enuresis, behavioural problems, concurrent bowel disease.
Sutcliffe et al BAPS 2016
 24.7% of clinic spaces were used for patients with  chronic idiopathic constipation.
9.1% of clinic spaces used for medically managed patients

18. POTENTIAL COST SAVINGS
Secondary and Tertiary OPD referrals
£160 to £220 for first appointments
£94 to £123 for follow-ups,
new/follow-up ratios
A&E attendances (average cost £108)
Day case treatment (average cost £693).
Specialist nurse in primary care
average £17.66 an hour.

19. Society for Pediatric Urology, Miami 2014