Written evidence submitted by the Paediatric Continence Forum (FGP0271)


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 area of paediatric health.

Membership includes the charities ERIC (The Children’s Bowel & Bladder Charity) and Bladder & Bowel UK as well as 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 School and Public Health Nurses Association (SAPHNA), the British Association of Paediatric Urology and Continence Nurses, as well as representation from across the devolved nations.

Its 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.

What are the main challenges facing general practice in the next 5 years?

Continence problems remain heavily socially stigmatised and often go unreported by children and young people. Issues including bedwetting, daytime wetting, constipation and soiling often cause feelings of low self-esteem and social isolation, affecting a child’s emotional and physical development. This in turn can contribute to family stress and peer bullying, both of which prevent the child from taking full advantage of social and educational opportunities at school and at home.

At least 900,000 children across the UK suffer from continence issues, making them among the most common health conditions experienced by those under 18 years of age. Despite this, continence care has been consistently overlooked as a serious problem in local healthcare systems. A regular triannual Freedom of Information audit conducted by the PCF has repeatedly shown that CCGs and Health Boards across the UK are failing to provide adequate integrated paediatric continence services. Of the results obtained in late 2021, only 39.5% of CCGs and Health Boards have an integrated service for all of the problems listed above, while only 15% plan to commission a new paediatric service in the near future.

This suggests that the majority of CCGs and Health Boards continue to rely on universal services such as GPs, school nurses and health visitors to deal with paediatric continence problems, rather than ensuring that all children have access to properly trained continence professionals.

In the absence of integrated, community-based paediatric continence services, general practice clinics have a vital role in the prevention, early detection, and effective intervention of childhood continence problems Access to good quality continence services is currently a postcode lottery, widening regional inequalities of access to children’s services and risking the overburdening of already depleted generic health services. This compromises treatment outcomes, negatively impacts the child and family, and increases costs to the NHS.

An effective system of early detection and prevention can radically reduce the likelihood of children with continence issues such as functional constipation with faecal impaction having to be hospitalised for treatment. In the absence of such a system, children are similarly more likely to be exposed to maltreatment, due to a lack of awareness amongst families that wetting and soiling can be symptoms of an underlying continence condition.

Despite this, of those CCGs and Health Boards that do have an integrated paediatric continence service, many have waiting lists of hundreds of children extending beyond 20 weeks, and in some cases reaching beyond a year. This reduces the efficacy of preventive treatment and risks exacerbating the stress and stigma experienced by the child and family and increases the pressure on general practice to deal with conditions that need regular follow-up, and that often require titration of treatment. Not having a named and known GP or practice nurse with the appropriate experience and knowledge who can also offer continuity of care can affect the child or family’s confidence to open up about the continence problems that they are suffering with.

What part should general practice play in the prevention agenda?

With Primary Care Networks expected to be the blueprint around which integrated community-based health services will develop, it is vital that paediatric continence is considered a priority in their prevention agendas. General practice has a significant role to play as a mediator between the NHS and children’s bladder and bowel health, by responding proactively when symptomatic children present through providing children and young people with the resources, signposting, contact, and support that they need, both to open up to health professionals and to follow through with treatment that may need to be reviewed and adjusted regularly. Strengthening this role will very likely reduce the resource burden on the NHS by diagnosing early, reducing the likelihood of chronic issues developing, and countering the stigma faced by children due to continence issues.

A well-resourced and efficient general practice will reduce the reliance of the paediatric continence care sector on school nursing and health visiting, by providing prompt, proactive first-line treatment, in turn freeing up these resources for other areas of paediatric health that face similar backlogs in treatment and variability in service. As part of this, health visiting should be explicitly recognised as first-line prevention, so that, when patients are referred to their GP, they are taken seriously from the outset.

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. With each case saving an average of £1,800, and with further greater potential savings for constipation, a prioritisation of paediatric continence in the prevention agenda may also free up significant resources across NHS services.

How has the development of Primary Care Networks improved the delivery of proactive, personalised, coordinated and integrated care and reduced the administrative burden on GPs?

The PCF’s FOI data shows that, since the development of Primary Care Networks (PCNs) in 2020, there has been variable improvement to the delivery of paediatric continence services. Results from 2021 indicate that, for example, just 21.7% of CCGs and Health Boards have a service led by a specialist paediatric continence advisor, a decrease from the 22.94% recorded in 2017.

Such results confirm that, while the development of PCNs is a step in the right direction, there remains far more to do. Integration remains the anomaly across the country-wide range of localities, and the lack of widespread plans to commission new paediatric services where they are missing is concerning.

Without greater integration of children’s continence services, both GPs and families will continue to face a significant administrative challenge in coordinating different clinics where these exist, and in sourcing appropriate specialist support for the child where these do not exist , which in turn affects the experience of the child in receiving care. Such disjointedness also puts the burden of proactivity onto the families in contacting and reaching different clinics or trying to source help where no clinics exist, rather than on the health provider.

Dec 2021