Read the Children’s Continence Commissioning Guide 2019.

The Paediatric Continence Forum has launched  its new Guide (September 2019) on how to commission and run integrated, nurse-led, community-based paediatric continence services. These are clinically effective, improve the lives of children and their families and generate significant cost savings for the NHS.

Bladder and bowel (continence) problems affect more than 900,000 children and young people in the UK, with a significantly negative impact on their health, wellbeing, education and emotional and psychological development. However services in this area of child health remain fragmented and inadequate, with too many children attending A&E/ admitted for acute constipation and urinary tract infections, or are referred inappropriately to already overstretched paediatric outpatient departments. This unhappy situation could be sorted out much earlier and more effectively in the community.

A central premise of the Guide is that all children from birth to 19 with continence difficulties should have access to an integrated Community Children’s Continence Service (CCCS).

This research-based Guide gives a clear description of what a “good” service looks like and how it should be run. It includes; an appropriately resourced multidisciplinary team led by a children’s continence nurse specialist and clear and effective care pathways to other key services. Also included are good referral pathways to and from universal school nurse and health visitor services at Level/Tier 1- services which provide an important role in the early identification of problems with toilet training and the onset of continence difficulties.

Read the Children’s Continence Commissioning Guide 2019.

Dr Penny Dobson MBE Chair of the Paediatric Continence Forum, said:

“The PCF is concerned about the increasing pressure on paediatric continence services across the UK. Our 2017 FOI survey found that only 41% of CCGs and Health Boards commission all four continence services ( bedwetting, daytime wetting, constipation/soiling and toilet training).Services in many areas are therefore  fragmented and inadequate.

This clear and informative Guide is an opportunity for commissioners to create positive and effective clinical services for this all too often neglected group of children, as well as make savings for the NHS. By doing so commissioners will also fulfil the terms of the NHS Long Term Plan, by; reducing A&E attendances; creating an integrated and collaborative structure for service delivery and, most importantly, responding to the needs and wishes of all children, including those with learning and physical disabilities”  

Read the Children’s Continence Commissioning Guide 2019.

Read and give Feedback

Here is the literature review of the Commissioning Guide.

We welcome your feedback on the Guide and if you would like to share your own experiences of service development, do contact us by email paediatriccontinenceforum@whitehouseconsulting.co.uk.

Case Studies

A Decade in the Making: Development of a comprehensive, nurse led, community based, Children and Young People’s Continence service across West Sussex.

Developing Continence Support at Level 1 and a complementary Children’s Continence Pathway

Service Development in Waltham Forest

 Dr Penny Dobson MBE, Chair of the Paediatric Continence Forum, recently appeared on BBC Wales to discuss the growing lack of support for children living with bladder and bowel continence issues.

“I think many will be suffering in silence,” she said.

“It’s a neglected area of child health but the effects on the child and the family – if it’s not addressed at an early stage – can be devastating.”

“Continence problems have a known link with mental health difficulties,” Dr Dobson added.

“Children can feel different, it affects their self-esteem, they can’t always go on social activities and it affects them at school. Bullying is a problem for many children with continence problems.”

You can read the full article here.

Guidelines from the UK’s National Institute for Health and Care Excellence (NICE) say that people with bladder and bowel problems from birth to 19 years old should have access to integrated, community-based paediatric continence service led by a specialist nurse.

In 2017, just one of the seven Welsh health boards provided the recommended service, according to a Freedom of Information inquiry by a campaign group, the Paediatric Continence Forum.

Across the UK, the figure was 41% – two out of every five equivalent bodies.

Research by BBC Wales suggests the situation in Wales has improved recently to reflect the UK average, with three health boards – Aneurin Bevan, Betsi Cadwaladr, and Cardiff and Vale – saying they provide the recommended service.

The other four boards said children were supported through a range of services such as school nurses, physiotherapists and consultants.

However, Dr Penny Dobson, founder and chair of the Paediatric Continence Forum, claimed there was a “failure” of provision and the situation still needed “radical improvement”.

“I think many will be suffering in silence,” she said.

“It’s a neglected area of child health but the effects on the child and the family – if it’s not addressed at an early stage – can be devastating.”

“Continence problems have a known link with mental health difficulties,” Dr Dobson added.

“Children can feel different, it affects their self-esteem, they can’t always go on social activities and it affects them at school. Bullying is a problem for many children with continence problems.”

If not properly assessed and treated, Dr Dobson said children could also end up in A&E with serious constipation, or kidney problems caused by urinary tract infection.

Where the full service provision does exist in Wales, parents claim it is overstretched.

Bethan (not her real name) is also in her first year at secondary school and has bladder incontinence which has led to anxiety problems.

“Only one friend knows, she’s really close. If I tell another friend she’ll probably tell everyone,” she says.

“Everyone will start asking – I don’t want to go through that hassle.”

Her mother says: “For young people, living with this is horrendous. There’s nothing funny about it. It affects their quality of life and they need support.

“Bethan has had times where’s she’s refused to go to school, leave the house or go anywhere because she’s hiding. That’s heartbreaking.”

She adds: “There’s not enough funding, not enough staff, not enough counselling services for children with bladder and bowel problems.

“It’s really important to remember that the children go to the clinic every couple of months and that’s the only chance they get to offload, to cry, to laugh and to bond with the health professional.

“It’s just so important to children’s general wellbeing.”

‘Lack of school support’

Children’s Commissioner for Wales Sally Holland said youngsters should have the same level of support wherever they live.

“If 40% of the health boards in Wales can meet the NICE guidelines, then there’s no reason why the others can’t as well,” she said.

Ms Holland added that families had contacted her with complaints about the lack of support in school.

“That reinforces the fact that this not just an issue in the home, it’s an issue wherever the child goes,” she said.

The Welsh Government said it expected health boards to deliver services in line with NICE guidelines.

“It is essential that children and young people with continence problems undergo a comprehensive assessment to identify underlying problems and ensure these conditions are diagnosed and treated by the appropriate clinician,” a spokesman said.