Cauda Equina Syndrome’s National Awareness Day
Cauda Equina Champions Charity will be hosting the annual Awareness Day on 1st October 2021 supported by with a festival of online workshops, Q&As and loads more from 27th September. The theme of this year’s festival is ‘Sharing good practice’ as the charity aims to shine a light on the best pathways and services being adopted by the NHS and clinicians to prevent avoidable harm enable the best outcomes for patients.
The charity launched the awareness day last year and have since gained the support of two celebrity ambassadors: Duncan James and Storm Keating. Both of whom have been diagnosed with Cauda Equina Syndrome (CES) and want to help other people spot the red flags as soon as possible.
The red flags of CES include:
- Bladder issues
- Severe back pain
- Leg weakness and numbness
- Saddle numbness
- Sex related problems
Failure to identify ‘Red flag symptoms’ and get the right treatment within 24 hours can lead to devastating progression of the syndrome.
Claire Thornber, Founder of Cauda Equina Champions Charity commented: “We launched this awareness day last year during the height of the pandemic, because we realised that a lot of people were unable to seek urgent healthcare. We wanted to spread awareness of the Red flags so that people suffering with CES could self-diagnose and get the treatment needed as quickly as possible. This is our second annual awareness day, and we want to continue to help as many people as possible, so that more people are treated before the progression of the syndrome takes over. We continue with this year’s theme of “Sharing good practice’’ to highlight the work of medical professionals who are dedicated to improving outcomes for patients diagnosed with CES.
“Drawing on our experience, friends and colleagues over the last ten years, we wanted to showcase the very best efforts of our charity to Cauda Equina patients all over the world. Our festival for the awareness day is a celebration of all those affected by CES, and a way to support those struggling mentally by providing a beacon of hope and an opportunity to speak with those we understand best.”
The week-long celebration will include expert speakers in rehabilitation, neurosurgery and psychiatry, support group discussions and medical product demonstrations and advice from nurses, including:
- ‘Body image and exercise after CES diagnosis’ – with physiotherapy and dietician advice
- ‘Sharing Good practice’ – with Mr Munawar Mecci, Spinal Rehabilitation Consultant from James Cook Spinal Hospital and Charity Trustee
- ‘Operating to reduce permanent disability from CES’ with Farooq Aziz, Consultant Spinal Neurosurgeon from James Cook University Hospital
- ‘Core outcome set for CES’ with Nish Srikandarajah, The Walton Centre, Liverpool
- ‘Psychological impact of CES: Living with an invisible disability and the value of peer support’ with Helen Smith, Clinical Psychologist from RNOH
- Plus loads more, to be announced soon!
The Cauda Equina Syndrome Festival 2021 takes place from Monday 27th September and will run until Friday 1st October. To sign up please visit www.cesfestival.org to keep updated on what conferences are soon announced.
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For more information please contact:
Daisy Craydon PR
07539494720
About Cauda Equina Champions Charity
Cauda Equina Champions Charity was officially given charity status on January 10th 2020.
Today’s charity has evolved from The Cauda Equina Syndrome Association CIC, a non-profit founded by Claire Thornber in 2013.
Cauda Equina Champions Charity is a patient led organisation that aims to raise awareness of cauda equina syndrome, support those living with the condition and provide bespoke, tailor-made services for service users and their loved ones.
OUR AIMS
- To reduce trauma and isolation after diagnosis
- Promote positive recoveries
- To enable best patient outcomes
- To ensure that every case of cauda equina syndrome is recorded making accurate data is available concerning incidence and long-term outcomes
- Facilitate the seamless triage of patients throughout their cauda equina experience
- To reduce delayed treatment and unnecessary suffering
