Healthcare professionals and patients will unite next week at a first-of-its-kind event to help raise awareness of the life-changing impact of Cauda Equina Syndrome (CES). 

The inaugural CES Festival and Conference will run from Monday to Friday next week, culminating in International CES Awareness Day on October 1. 

The free virtual event will bring together key figures from across the UK to help widen discussion around the topic, which is still so little-known that many people suffer in silence from a lack of diagnosis or appropriate support. 

The syndrome is a rare and severe type of spinal stenosis where the nerves in the lower back suddenly become severely compressed, and failure to diagnose and receive appropriate treatment can lead to greater risk of long-term consequences including incontinence or paralysis. 

Sexual problems are also commonly experienced by people with Cauda Equina, exacerbating the mental and physical effects of the condition, and which can leave people facing life-changing consequences in a number of ways. 

Through the CES Festival and Conference, organiser Claire Thornber – founder of the Cauda Equina Champions Charity, the UK’s biggest voice on the condition – has brought together a full spectrum of insight into CES, to enable healthcare professionals and the public alike to gain a better understanding of CES and its impact. 

Leading professionals from the healthcare world will feature, alongside people with personal experience of CES, and attendees will be given an opportunity to revisit a landmark BBC report from 2019 which, for the first time, laid bare the reality of CES on the UK healthcare system. 

The programme for each day will be shared with pre-registered attendees on the morning, with the webinar content remaining available on the website from then on, with the intention of continuing to grow the resources available and create a hub of advice and inspiration for people affected by CES. 

“We want this to be an opportunity to share best practice, a lot of people are trying really hard to change the situation around CES and the lack of awareness, and mindset is shifting, but there is a lot to do to change the fact it is still too unknown,” says Claire. 

“There is no national pathway yet, although some good work is being done in a couple of places, so we are moving closer. Official statistics say there are 1,000 cases of CES each year, but we think it is probably three times that, as it’s still not properly recognised. There are as many cases of CES as there are meningitis each year, but why is there no public health campaign?

“The impact of CES can be life-changing. We are seeing people being discharged after their operation with no support until their three-month follow-up, they’re cast into the community. This can cause relationship problems, sexual problems, problems in returning to work. These things change lives. 

“We want the website to be a growing resource for healthcare professionals and patients and to help change the perception of CES.”

To register for the CES Festival and Conference, visit here