Charities and MPs Urge Baroness Casey to Tackle Continence Care Crisis in Social Care Review
Charities and parliamentarians have written to Baroness Casey of Blackstock as she begins her independent review of adult social care, warning that a largely overlooked crisis is leaving people living with incontinence quietly failed by a system driven by budgets rather than clinical need.
In a joint letter to the House of Lords, the signatories argue that continence care remains one of the most neglected and taboo areas of adult social care. Despite affecting some of the most vulnerable people in society, it is largely absent from national reform debates, even though it has a profound impact on health, independence, and quality of life.
The letter describes continence care as a “hidden frontline of indignity” and calls on the review to place dignity at its heart, with explicit recognition of the challenges faced by people who rely on continence support.
Led by the Spinal Injuries Association, the letter is supported by a coalition of health and disability charities including Shine, Pain UK, Disabled Living, Bladder and Bowel UK, The Neurological Alliance, and Dementia Carers Count, alongside senior parliamentarians Dame Caroline Dinenage MP, Mohammad Yasin MP, Baroness Ritchie of Downpatrick, and Baroness Grey-Thompson.
The letter warns that incontinence is often treated as an uncomfortable afterthought in adult social care, despite the serious consequences of inadequate support. Poor continence care can lead to urinary tract infections, skin damage and severe emotional distress, while many people report being unable to leave their homes or take part in everyday activities because they lack reliable access to appropriate products and specialist support. In June, a survey of 500 healthcare professionals found that substandard incontinence products are delaying hospital discharges and driving avoidable admissions.
Incontinence affects an estimated 14 million people in the UK, cutting across age, disability and long-term illness. As continence issues become more common later in life, campaigners warn that demand will rise sharply as the ageing population grows – placing further strain on a system that charities say is already failing to meet basic needs.
The intervention follows an investigation by the i Paper, which found that patients with incontinence are being “robbed of their dignity”. Freedom of information data revealed that more than half of the trusts questioned trusts cap continence products at just three or four pads per day – regardless of individual need.
The investigation also found that nearly a third of trusts providing budget data overspent by more than £4m collectively, fuelling concerns that financial pressures are driving rationing and leaving patients and families to make up the shortfall themselves.
Commenting on the letter, Nik Hartley, Chief Executive of the Spinal Injuries Association, said: “People, including those with spinal cord injuries, should not have their independence determined by a postcode lottery. Too many are denied appropriate continence support because of arbitrary caps and under-resourced services.
“We would welcome the opportunity to work with the Commission to end this inequality and ensure provision is driven by patient safety and clinical need, not cost-cutting.”
Evidence from an NHS pilot, suggests that procurement decisions in formal care settings may be creating a false economy, with lower-cost continence products driving higher overall expenditure due to more frequent replacement and increased demands on staff time. The pilot found that better-matched, higher-quality products significantly reduced leakage, improved efficiency, and lowered total care costs.
Charities also stressed that the impact of restricted continence care is felt not only by patients but also by families – many of whom are forced to take on additional caring responsibilities when formal support falls short.
Tracy Whitehouse, Service Manager and Adult Specialist Nurse at Bladder and Bowel UK, said: “Continence care requires the recognition it deserves, which is long overdue. We need to drive evidence-based practice, putting the patient at the centre of their care.”
In their letter, the signatories urge the Commission to explicitly recognise continence care as a core component of dignity in adult social care and to recommend reforms that ensure access to proper assessment, specialist support and sufficient products based on individual need rather than postcode.
