Children with bladder and bowel problems are waiting months or even years for specialist NHS support as overstretched incontinence services struggle to keep up with rising demand, new Freedom of Information (FOI) data has revealed.
FOI responses from more than 160 NHS trusts across England point to a fragmented system, with access to care varying widely by postcode and leaving many children without timely support at key stages of their development.
These conditions affect an estimated one in nine children and young people in the UK, or more than 1.5 million people. But despite the scale of the need, supply remains inconsistent and, in some cases, increasingly difficult to access.
In Yorkshire, data shows children are facing wait times of up to 104 weeks for their first diagnosis. In West Middlesex, delays of 70 weeks or more are common, and in some areas routinely exceed six months, leaving families to deal with complex situations without professional help.
Burden on children and families
For many people, these are not small or short-term problems. Conditions such as bedwetting, daytime incontinence, and chronic constipation can have a significant impact on a child’s physical health, self-confidence, and ability to participate in daily activities. Without early intervention, the problem can become more difficult to treat and increase the risk of infection, long-term complications, and lasting effects on mental health.
Waiting lists are also growing nationwide. Nearly 700 children are waiting to be helped in Sussex, and more than 500 children with special educational needs are on the list in Cambridgeshire. Nearly 500 children are waiting for care in Hampshire and the Isle of Wight.
Sunni Liston, specialist pediatric nurse at children’s bowel and bladder charity ERIC, said: ‘We hear first-hand the impact of patchy and stretched NHS services in this area of children’s health. Our online and web form services are flooded with calls and emails from families desperate for support. Many are waiting for assessment, guidance and answers. Parents who find us are often distressed, anxious and frustrated.”
“We are supporting these families and trying to bridge the gap in the best way we can, by listening, providing information and providing reassurance to help them feel less isolated. However, we are unable to provide diagnosis or medical advice and are finding it difficult to keep up with the growing demand.”
We have always supported the development of pediatric services and campaigned for universal access to specialist support for children of all ages. We see the impact of long waiting times and delays in service delivery every day, with many calls to our helplines from families with children in need of assessment, treatment and support.
Davina Richardson, British Cystoenterology Pediatric Specialist Nurse
Mr Richardson added: “Most of these families will benefit from timely access to well-resourced specialist, community and nurse-led services. This will not only significantly reduce the social, emotional and financial burden on affected children and their families, but will also reduce unavoidable A&E and hospital admissions and make care more cost-effective for the NHS.”
Expanding services and tightening access
As pressure on services increases, the burden begins to shift elsewhere in the system. In some areas, provision gaps are being filled by services not designed for children. Hundreds of children are currently supported by adult incontinence services that address basic needs such as providing pads, with East Lancashire Hospitals NHS Trust supporting 872 children in this way.
The effects are often more than physical. Children may miss school, avoid social activities such as sleepovers and field trips, and experience shame and stigma that undermine their self-confidence and mental health.
Alison Wileman, Market Access Specialist at Escity, a global market leader in incontinence care, said: “Timely access to specialist incontinence care can make a huge difference to outcomes. If children are seen early, these symptoms can often be managed effectively. If access is delayed, the problem becomes more complex and difficult to treat, placing a greater strain on children, their families and on services across the NHS.”
Although the majority of trusts report providing some form of child incontinence support, provision remains uneven. Of those surveyed, 45% confirmed they had dedicated services, while 40% said they did not, pointing to a significant gap in specialty care.
The data also suggests that access is tightening in some areas. One in five trusts report that their services have closed, been reduced or restructured in recent years, with changes including restricting access for younger children, introducing additional steps before appointments and, in some cases, refusing to accept children with certain symptoms unless other symptoms are also present.
Other trusts have raised the age at which children can receive essential incontinence products or narrowed eligibility criteria, allowing some families to manage without support.
Incontinence conditions in children are often highly treatable, especially with early intervention. However, delays in access risk prolonging symptoms and increasing burden on families, adding to pressure on local pediatric services and concerns about the consistency of care across England.
