The first National Paralysed Bowel Care Awareness Day

The first National Paralysed Bowel Care Awareness Day took place on Monday 10 February 2025 with a special launch event in Westminster.

On the day we were delighted to host a drop in and information event at Portcullis House (Westminster) alongside other disability charities, and partners. That evening we welcomed the Minister for Disability the Rt Hon Stephen Timms, fellow MPs and invited guests to a Parliamentary reception at the House of Lords.

Paralysed Bowel Awareness Day sees the collaboration between spinal cord injuries charities Spinal Injuries Association, Aspire, Cauda Equina Spinal Cord Injury (CESCI), Spinal Research, Regain Sports, Stoke Mandeville Spinal Research, and spina bifida charity Shine.

The day aims to increase awareness of the condition, while charities work with the government and the NHS to increase training among healthcare professionals to improve patient outcomes.

To mark the first awareness day, charities came together alongside MPs and healthcare professionals last night at a House of Lords reception, attended by Minister of State for Social Security and Disability, RT Hon Sir Stephen Timms MP who said: “It’s vital that people with spinal injuries get the right care, which is why this first National Awareness Day for Paralysed Bowels is so important and should be the first of many. We’re committed to breaking down barriers people with injuries and disabilities face, and our upcoming reforms to the Health and Disability benefits system will ensure people are given the support they need to unlock their full potential.”

Nik Hartley OBE, CEO of Spinal Injuries Association, said: “We are so pleased the government has agreed to dedicate a day to raise awareness of this issue. We will campaign together to ensure everyone, wherever they live, can be supported by trained nurses and carers.”

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PARALYSED BOWEL CARE CAMPAIGNPHOTO ALBUM

 

Healthcare professionals and patients welcome launch of national awareness day for those with paralysed bowels

Healthcare professionals and patients across England and Wales have shared their support for a new awareness day, led by Spinal Injuries Association and backed by the Department of Health and Social Care, that highlights the need for paralysed bowel care in general healthcare settings for people with a central nervous system disease or injury.

Paralysed bowels affect hundreds of thousands of people in the UK with central nervous system conditions that impact the brain and/or spinal cord causing a loss of bowel function and can put a person’s safety at risk if not properly managed.
While no official figures on the prevalence of paralysed bowels exist, it is estimated that over 457,000 people in the UK with neurological conditions, including spinal cord injuries, multiple sclerosis, Parkinson’s disease, and spina bifida, experience the symptoms of paralysed bowels.

Despite the severity of the condition, not all NHS trusts have a bowel care policy and not all nurses are trained in paralysed bowel care, meaning patients are met with a postcode lottery when it comes to entering general healthcare settings.
In the 2024 ‘What Matters?’ survey conducted by Spinal Injuries Association, 54% of people with a spinal cord injury reported substandard bowel care after being admitted as an inpatient.

Cath Williams, clinical advisor to the Association for Continence Professionals, said: “Incontinence is accepted within hospitals, unfortunately, but it is about getting people to understand the difference between that and not opening their bowels at all. This has a specific patient safety element. If people don’t get their bowel care they need, they could have a stroke and die, it’s as simple as that.”

Carol Adcock, spinal cord injury specialist nurse lead at Spinal Injuries Association, explained the significance of improper bowel care to someone with paralysed bowels: “Imagine you are unwell, trapped in bed. Despite asking for help you have been told you cannot go to the toilet. Your bowel is becoming so full that there is a serious risk of bowel perforation but before this occurs, you are terrified because you know if this doesn’t kill you then the risk of your blood pressure reaching such high levels could kill you anyway, but no one is listening. You lay in the bed with all sense of dignity and control lost, helpless.”

Lara Davies, a nurse from North Wales, only became aware of the need for paralysed bowel care after her son had a spinal stroke in 2016, despite her years of training. She said: “There’s not enough training on paralysed bowel, definitely not. That needs to change in the universities because we’re just not getting it in the hospital.”

“If people don’t get the bowel care they need, they could have a stroke and die, it’s as simple as that.”