‘Improve bowel care provision for people with SCI’

The need for greater focus on specialist bowel care for spinal cord injury (SCI) survivors is the message of this year’s Spinal Cord Injury Awareness Day. 

SCI can have life-changing impact not only on a person’s ability to walk, but on all bodily functions below the point of injury, including bladder and bowel function. 

The This Is Serious Sh1t campaign from the Spinal Injuries Association was launched to tackle awareness of the issue and increase understanding of the implications of SCI. 

Mohammed Belal, a consultant urological surgeon at University Hospital Birmingham, who himself sustained SCI after being struck by a tree in 2021, believes the hardest part of his journey was the bowel care.

“There is still a lack of knowledge around the public perception of SCI and SCI Awareness Day is important so that more of us have a greater understanding of the many issues that SCI people must face on a day-to-day basis,” he said. 

According to the SIA, specialist bowel care is an issue which has been routinely ignored by policy makers for years, with serious consequences for patients.

In a survey of spinal cord injured people last year, 72 per cent of respondents said they faced significant bowel management challenges in their life.

Carol Adcock, a specialist nurse for SIA, said: “The injustice of lying in bed with all sense of dignity and control lost must stop. 

“Imagine you’ve been told you cannot go to the toilet. You’ve been put in a nappy and told to poo in that, and then wait for someone to come and clean you up. 

“Your family and associates are willing to come in and help you go the toilet, but they are not allowed. 

“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. 

“SIA hear of similar versions of this scenario every week.”

Many patients have told the charity shocking stories of their experiences, like Heather Scott from Leicestershire. 

“I was instructed to get on with my own bowel care even if that meant messing the bed, so I soiled myself many times,” she said.

“I’ve been spinal cord injured for over 40 years and have never felt as humiliated and frustrated as I did then.”

The This is Serious Sh1t campaign was formally launched at the All-Party Parliamentary Group on SCI meeting in March, and since then, SIA have had numerous offers of help and support from MPs, healthcare professionals, individuals living with SCI, charity partners, NHS Trusts and care agencies.

Dave Bracher, SIA’s campaigns manager, said: “We understand that change won’t happen overnight, but we will continue to actively campaign on this issue until we see an end to this needless suffering.  

“It’s time we were all more open about bowel care but unfortunately, it’s still a subject that patients feel embarrassed to discuss but this is the reality of life for far too many spinal cord injured people. This is Serious Sh1t.”

To support the campaign in any way, contact Dave Bracher at d.bracher@spinal.co.uk