Patients with bladder and bowel conditions are waiting more than a year for specialist NHS care in some parts of England, according to new freedom of information (FOI) findings, prompting warnings that people with continence problems are being left without the support they need.
The data, obtained through FOI requests to more than 160 NHS trusts in England, reveals wide variation in access to adult continence services. Some patients are seen within days of referral, while others wait months – and in the worst cases, more than a year – for an initial assessment.
Of the trusts that responded, 68% said they provided an adult continence service. Reported waits across adult continence pathways ranged from rapid responses in some services to as long as 76 weeks in others. The longest wait was reported by Sheffield Teaching Hospitals NHS Foundation Trust. Manchester University NHS Foundation Trust reported a 48-week wait for its Trafford service, while Hull University Teaching Hospitals NHS Trust reported 45 weeks.
Campaigners said the findings raised serious concerns about a postcode lottery in continence care, with patients’ access to assessment, treatment, advice, and products depending heavily on where they live.
A hidden but life-changing condition
An estimated 14 million people in the UK live with some degree of bladder or bowel incontinence, including around 6.5 million with a bowel problem.
The impact can be profound, affecting almost every part of daily life – from work, sleep, relationships, independence and mental health. People living with continence problems may experience anxiety, loss of confidence and isolation, while poorly managed incontinence can lead to urinary tract infections, skin damage and avoidable hospital admissions.
Yet in many cases, continence problems can be prevented, cured or improved with timely specialist care, making the scale of the waits particularly concerning.
Tracy Whitehouse, Service Manager and Adult Specialist Nurse at Bladder and Bowel UK, said:
“The guidance is clear; many continence conditions are both treatable and manageable when patients receive appropriate assessment and intervention. The impact that prolonged delays have on patients’ health, dignity and quality of life is immeasurable.”
Services under pressure
The findings also point to substantial waiting lists in some parts of the country. Leicestershire Partnership NHS Trust reported 1,561 adults waiting for continence care, while Lincolnshire Community Health Services NHS Trust reported 1,383, and Sussex Community NHS Foundation Trust reported 1,314 for its bladder and bowel service.
The responses suggest adult continence provision has come under growing pressure in recent years. When asked whether any part of their adult continence or bladder and bowel services had been closed, reduced or restructured since October 2022, 22 trusts said they had.
Professor Martin Green OBE, Chief Executive of Care England, said:
“Continence care is too often treated as a product issue when it is a fundamental part of dignity, independence and good care. When people cannot access timely assessment and specialist support, the need does not disappear, the consequences are instead carried by individuals, families and frontline care services, often through disrupted sleep, reduced mobility, skin problems and greater pressure on staff, and also contributing to additional avoidable costs across the whole system including the NHS.
We need a consistent national approach in which people can access the right assessment, clinical support and products based on individual need, regardless of where they live. Getting continence care right is not only better for people; it is a far better use of health and social care resources.”
Care based on need
The findings fuel wider concern over whether continence care is being delivered consistently according to clinical need.
Earlier FOI research found that some NHS trusts were rationing continence products, such as absorbent pads and pants, despite clinical guidance stating that provision should reflect individual need.
Health experts, charities, and patient groups have since backed the #EndThePadGap campaign, which calls for an end to arbitrary limits on the number and type of incontinence products supplied to patients.
The latest findings suggest the problem extends beyond product provision. In some areas, patients are also facing long waits to access the specialist services responsible for assessing, treating, and supporting adults with continence conditions.
For patients and families, the consequences can be immediate and deeply personal. Delays in care can mean months of disrupted sleep, anxiety about leaving the house, discomfort, embarrassment, and added pressure on relatives or carers.
Whitehouse added:
“Behind each delay is a person whose quality of life continues to deteriorate while they wait for treatment. These are not just waiting list statistics – they are months of avoidable hardship for patients and their families.”
Helen Pyper, Head of Policy and Campaigns at Dementia Carers Count, said:
“Carers tell us how exhausted they feel when they are repeatedly up at night managing continence issues. Having prompt access to a continence service for support and the right products can be life changing - not only for the person with dementia but carers too. Such significant waits are simply unacceptable in this day and age and will be contributing to carers reaching breaking point. When they can’t care anymore, it's health and social care services who bear the cost. Cutting back, rather than investing in continence services, is short-sighted in the extreme.”
Campaigners are calling for better national oversight of adult continence services, clearer accountability for trusts that do not follow clinical guidance, and an end to arbitrary restrictions on continence products.
