Time To Change Public Perceptions Of Spinal Cord Injury

Today (Friday 19 May) is Spinal Cord Injury Awareness Day and the focus this year is on Spinal Injuries Association’s bowel care campaign to address the many challenges a person faces when they sustain an injury.

A spinal cord injury does not just affect the ability to walk, but all bodily functions below the point of injury including bladder and bowel function.

Mohammed Belal (pictured left), a Consultant Urological Surgeon at University Hospital Birmingham, who himself sustained a spinal cord injury 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 spinal cord injury (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.’

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

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.”

In a survey of spinal cord injured people undertaken by the Spinal Injuries Association in 2022, 72% of respondents said they faced significant bowel management challenges in their life. Many patients have told the charity shocking stories of neglect 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. I’ve been spinal cord injured for over 40 years and have never felt as humiliated and frustrated as I did then.”

‘This is Serious Sh1t’ campaign was formally launched at the All-Party Parliamentary Group on spinal cord injury meeting in March, and since SIA have had had numerous offers of help and support from a wide range of people: MPs, healthcare professionals, individuals living with SCI, charity partners, NHS Trusts and care agencies. This is clearly a topic that is important to many people.

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.”

If you’d like to be involved in a future forum, and/or if you can support the campaign around the areas of data/evidence, personal or institutional connections, or just generally spreading the word and making the campaign more visible, you can email the SIA campaigns manager, Dave Bracher, at d.bracher@spinal.co.uk