Children with bladder and bowel conditions are waiting months – and in some cases years – for specialist NHS support, as overstretched continence services struggle to meet rising demand, new Freedom of Information (FOI) data reveals.
FOI responses from more than 160 NHS trusts across England point to a fragmented system, where access to care varies significantly by postcode and many children are left without timely support at a critical stage in their development.
These conditions affect an estimated one in nine children and young people in the UK – more than 1.5 million. Yet despite the scale of need, provision remains inconsistent and, in some cases, increasingly difficult to access.
In Yorkshire, data shows that children face waits of up to 104 weeks for an initial assessment. While in West Middlesex, delays of 70 weeks or more are common, with several areas routinely exceeding six months – leaving families to manage complex conditions without specialist input.
The toll on children and families
For many, these are not minor or short-term issues. Conditions such as bedwetting, daytime incontinence, and chronic constipation can have a profound impact on a child’s physical health, confidence, and ability to take part in everyday activities. Without early intervention, problems can become more difficult to treat, increasing the risk of infections, long-term complications, and lasting effects on mental wellbeing.
Waiting lists are also growing across the country. In Sussex, nearly 700 children are waiting for support, while more than 500 children with special educational needs are on the list in Cambridgeshire. In Hampshire and the Isle of Wight, close to 500 children are awaiting care.
Sunni Liston, Paediatric Specialist Nurse at ERIC, the children's bowel and bladder charity, said:“We hear first-hand the impact of patchy and stretched NHS services in this area of children's health. Everyday our helpline and webform service is flooded with calls and emails from families desperate for support. Many are waiting for assessment, guidance and answers. Often parents are distressed, anxious and frustrated when they find us.
“We try to support these families and fill the gap in the best way we can; providing a listening ear, information and reassurance to reduce feelings of isolation. However, we can't diagnose or provide medical advice, and we are finding it difficult to keep up with the growing demand.”
We have always supported the development of paediatric 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 provision every day from the numerous calls to our helpline from families whose children need assessment, treatment, and support.
Davina Richardson, Specialist Children’s Nurse, Bladder & Bowel UK
Richardson added, “Most of these families would benefit from timely access to well-resourced, specialist, community, nurse-led services. Not only would this reduce the significant social, emotional, and financial burden on the affected children and their families, but care would be cost-effective for the NHS, by helping reduce avoidable admissions to A&E and hospital.”
Services stretched and access tightening
As services come under increasing pressure, the strain is beginning to shift elsewhere in the system. In some areas, gaps in provision are being filled by services not designed for children. Hundreds of children are currently being supported by adult continence services for basic needs such as pad provision, with East Lancashire Hospitals NHS Trust supporting 872 children in this way.
The consequences are often more than physical. Children may miss school, avoid social activities such as sleepovers or school trips, and experience embarrassment or stigma that undermines their confidence and mental wellbeing.
Alison Wileman, market access specialist at Essity, a global market leader in continence care said: “Timely access to specialist continence care makes a real difference to outcomes. When children are seen early, these conditions can often be managed effectively. When access is delayed, problems can become more complex and harder to treat, placing greater strain on children, their families, and services across the NHS.”
While a majority of trusts report offering some form of children’s continence support, provision remains uneven. Of those surveyed, 45 % confirmed they provide a dedicated service, while 40 % said they do not, pointing to significant gaps in specialist care.
The data also suggests that access is tightening in some areas. One in five trusts reported that services have been closed, reduced, or restructured in recent years, with changes including restricting access for younger children, introducing additional steps before a clinical appointment, and, in some cases, declining to accept children with certain symptoms unless other conditions are also present.
Other trusts have raised the age at which children can receive essential continence products or narrowed eligibility criteria, leaving some families to manage without support.
Children’s continence conditions are often highly treatable, particularly with early intervention. However, delays in access risk prolonging symptoms and increasing the burden on families, adding to wider concerns about pressure on community paediatric services and the consistency of care across England.
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