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Written evidence submitted by Paediatric Continence Forum

About the Paediatric Continence Forum

The Paediatric Continence Forum (PCF) is an independent national campaign group of health professionals, patient representatives and commercial members that seeks to raise awareness of children’s and young people’s bladder and bowel problems, and to improve NHS services in this often-neglected area of paediatric health.

It has close links to the charities ERIC, The Children’s Bowel & Bladder Charity, and Bladder & Bowel UK, with a membership that includes formal representation from the Royal College of Nursing (RCN), Royal College of Paediatrics and Child Health (RCPCH), the Community Practitioners’ and Health Visitors’ Association (CPHVA), the British Association of Paediatric Surgeons (BAPS), the British Association of Paediatric Urologists (BAPU) and the School and Public Health Nurses Association (SAPHNA), as well as representation from across the devolved nations.

The PCF’s vision is for every child to be able to receive the support they require so that any bladder or bowel condition is identified, assessed, and treated promptly to allow them to achieve their maximum quality of life and full potential and maximise efficient use of finite NHS resources.

Improving outcomes in population health and healthcare

This legislation adds weight to the case for integrated, community-based, nurse-led paediatric continence provision. It paves the way for multiagency health promotion, early detection and effective intervention for all childhood continence problems, and means bladder and bowel health promotion from birth is a responsibility of all professionals working with children and families.

Embedding the establishment and development of a properly resourced integrated, nurse-led continence service into all ICBs’ priorities will enable the improvement of outcomes in paediatric health and healthcare.

The PCF’s data indicates that, in 2021, just 37.7% of responses from CCGs had a service led by a specialist paediatric continence advisor. Such lack of integration across the country, together with a general lack of plans to commission new paediatric continence services where they are missing, presents a threat to the quality and safety of care that is provided to children with bladder and/or bowel issues.

Greater integration of children’s continence services will make the following tangible and wide-ranging positive differences to outcomes in population health and healthcare:

• Reduce the significant administrative challenges facing primary healthcare professionals (GPs, school nurses and health visitors) and families in accessing appropriate care and in coordinating different clinics, which in turn affects the experience of the child in receiving care and costs to the NHS.
• Reduce both the number of children presenting inappropriately at A&E and the number of children being referred to more expensive consultant-led care.
• Minimise the rates of admissions for faecal impaction and product provision for children with additional needs who could be toilet training – both of which remain higher than they should be.

To achieve this, ICS’ paediatric continence services should treat children and young people of all ages, from birth to 19 years old. Effective transition to adult bladder and bowel services for young people with ongoing issues is also important. Services should be available for all children, including children and young people with additional needs or disabilities who have a bladder or bowel health issue.

The service should have an appropriate skill-mix and be led by a paediatric continence nurse specialist. A clear and effective referral and care pathway is essential including level/tier one (GP, school nursing and health visiting) and level/tier three (secondary care), as well as interdisciplinary working as appropriate to each child, including with early years, education, child, and adolescent mental health services (CAMHS) and social services.

The Children’s Continence Commissioning Guide, available on the PCF’s website and in the process of being updated, provides more information.

Tackling inequalities in outcomes, experience, and access

Data from the PCF’s latest Freedom of Information project (see report here) has shown vast disparities across ICSs to deliver adequate and accessible paediatric continence care (see pages 27-30), defined by the PCF as a single integrated, community-based, nurse-led service covering all aspects of bladder and bowel care (see the PCF’s Children’s Continence Commissioning Guide). The disparities in service provision are evident with only 51.8% of CCGs in England commissioning for all of the main children’s bladder and bowel services: daytime wetting, bedwetting, constipation, soiling, delayed toilet training and product supply to children who are unable to be continent.

Disparities are further reflected in the staffing levels and caseloads where services exist, with some caseloads as low as 50, with others reaching over 11,000. Regardless, sparse levels of staffing for very high caseload numbers – with an average number of whole-time equivalent (WTE) staff of just 1.85 for an average caseload number of 495.1, inevitably restrict the quality, responsiveness, and effectiveness of services for children and young people that need it.

The data - which was collected by CCGs but mapped onto ICSs in the PCF’s report - shows vast variation in the quality of paediatric continence service provision within individual ICSs.  There is a need for each ICS to make sure their integrated care strategy includes a paediatric continence service across the whole ICS area. For example, those ICSs that encompass more than one former CCG area (such as Bedfordshire, Luton and Milton Keynes ICS) have stated in their FOI responses an intent to commission a new paediatric continence service and/or improve their current service. This approach of pro-actively bringing services together is welcomed.

However, for those ICSs with a lack of appropriately resourced community-based, nurse led bladder and bowel services for children and where there is varying levels of intent to update paediatric continence provision (such as East London Health & Care Partnership), a degree of oversight and accountability from the overarching ICS would be useful to ensure services have the expected level of resource and accessibility to ensure appropriate levels of care for affected children and their families as this has been demonstrated to be highly cost-effective as well as improving outcomes (see the Children’s Continence Commissioning Guide).

Enhancing productivity and value for money

An effective system of early detection and prevention can radically reduce the likelihood of children with functional bladder and bowel issues having to be hospitalised for treatment. This in turn prevents further exacerbating hospital backlogs across the country, while also reducing the burden on workforce of children needing multiple review appointments and repeat prescriptions. The PCF has previously calculated that an optimised care pathway for a typical child with bedwetting would cost approximately £318, compared with £2,118 for a sub-optimal pathway[1]. With each case saving an average of £1,800, prioritising the prevention agenda has the potential to free up vast resources across NHS services. Similar and significantly greater cost savings were demonstrated for a typical child with constipation and with intractable constipation.

Ensuring that each ICS’s integrated care strategy mandates integrated, community-based, nurse-led paediatric continence provision, would play a vital role in maximising service efficiency and value for money. Doing so would reduce the postcode lottery of access to good quality continence services.  Competent assessment at this point would prevent unnecessary and costly referrals to secondary care and reduce reliance on continence containment products (such as nappies and pads, hereafter referred to in this document as ‘products’).  The cost of inappropriate provision of products is a huge and unnecessary cost to the NHS and good practice in this area would make better use of restricted NHS resources. 

Furthermore, appropriate paediatric continence provision would ensure that there were specialist nurses available to support and would teach primary healthcare professionals about childhood bladder and bowel issues and promote good bladder and bowel health from an early age, including early potty training which reduces likelihood of later bladder issues and the symptoms of constipation. If addressed proactively and promptly constipation is less likely to become chronic. Chronic constipation can take months or years to resolve and is more costly to treat.

Helping the NHS support broader social and economic development

Research indicates a clear link between bladder and/or bowel issues and negative social behaviour including bullying, both as perpetrators and recipients, as well as a loss of self-esteem during important formative years. Missed education because of increased toilets visits or time at home due to associated problematic symptoms can have long-term negative effects on educational achievement and attainment, with the impact felt through to adulthood and employment opportunities. Additional costs of washing, drying extra clothing or bed linen, and additional difficulties with child-care for a child who requires intimate care, has a negative impact for all, but a disproportionate effect on those with lower incomes. There is also a link with punitive family responses which may be significant enough to constitute safeguarding concerns or which may escalate to abuse.

We also know that:

• Being toilet trained is one of the key skills that children need to develop independence, self-esteem and confidence and be able to thrive at school.  Yet teachers report a higher incidence of children starting school in nappies or having frequent wetting and soiling accidents during the school day, impacting on their ability to learn.

• Delayed toilet training and prolonged use of continence products impacts on the environment as nappy waste goes directly to landfill. Disposable nappies are one of the worst sources of contamination in recycled waste and one of the biggest contributors to single-use plastic waste.  Based on an average of five nappy changes over a 24-hour period it is estimated that a child potty trained between 3-4 years old will get through nearly 6,500 nappies.  This reduces to around 5,000 in a child potty trained by 24 months.

All these potential outcomes of poor paediatric continence care provision demonstrate the close association between strengthening the NHS’s paediatric continence offering and strengthening social and economic development. If continence is actively promoted and if bladder and bowel difficulties are identified early and effectively treated in the community, the emotional, social, and educational development of children can be better safeguarded and supported.

October 2022