Cauda Equina Syndrome Online Support Network

We are the UK’s first and only registered Charity for Cauda Equina Syndrome (CES) and are committed to raising awareness of this often debilitating condition which can effect anyone, at any time, regardless of age, gender or fitness level. The Charity was founded in October 2011 by Annie Glover, a sufferer of CES for three years.

CES is a serious neurological condition which occurs when the nerves of the Cauda Equina at the base of the Spinal cord become compressed, often by a prolapsed or 'slipped' disc but it can also be caused by trauma, tumours, infection or secondary to medical procedure. These nerves supply the bladder, bowel, genitals and lower limbs and damage can cause permanent disability in these areas.

Our mission is to provide a safe environment for sufferers & their carers to connect with each other, share experiences and information via the website or local support group. We also provide support, education and practical advise to Health Care Professionals in order to improve standards of care following diagnosis of CES, improve transferral procedures from GP or hospital and to give HCPs a patient perspective so they can gain a better understanding when treating/advising patients.

We also want to raise awareness of CES Red Flag Symptoms in the general public as well as front line medical professionals to help minimise the number of late & missed diagnosis of CES. Recent medical literature currently suggests that the outcome of surgical decompression following the 'Red Flag Symptoms' is better if decompression takes place within 48 hours, we believe, however that 'the sooner, the better' and this condition must be treated as the emergency it is, with speed of the essence.

Cauda Equina Syndrome is a huge litigation problem for the NHS with over £35 million in compensation being awarded in the last 10 years for CES related claims*, but as a charity we just want to ensure that patients are getting the treatment they deserve by working with the NHS to find solutions, not by pointing fingers.

We already work closely with the Sheffield Northern General Spinal Unit and the Queens Medical Centre in Nottingham, both sites have specialist CES clinics and support groups running and the charity hopes more hospitals will follow suit.

The Red Flag Symptoms are as follows;

  • Saddles anaesthesia – loss of feeling around the back side and genital area
  • Pain – Severe back pain, combined with leg pain or numbness/weakness in the legs
  • Bladder Dysfunction – Difficulty or inability to urinate or incontinence/loss of sensation
  • Bowel Dysfunction – Incontinence or constipation/ loss of sensation
  • Sexual Dysfunction – Inability to achieve erection or orgasm/loss of sensation

Any combination or severity of these symptoms may be a sign of CES and the Charity recommends urgent referral to specialist spinal team, from your GP or A&E to be able to confirm diagnosis and treat accordingly.

Contact Details

CES UK Charity
Suite 4 Elizabeth House
73 High Street
Syston
Leicestershire
LE7 1GQ

Web - www.caudaequinauk.org.uk
Tel - 0845 6021993 or 0116 2608294
Email - cesukcharity@gmail.com
Facebook - caudaequinauk
Twitter - @cesukcharity
LinkedIn – cauda-equina-syndrome-uk-charity

* NHSLA in June 2012 put figure at £35,404,899 between 2002 and 2012