Sexuality & Disabilities Advocacy Panel

Moderator: Tuppy Owens

About Claire Thornber

Claire, a former CES patient, founded the Cauda Equina Syndrome Association following her own delayed CES diagnosis ten years ago and later Cauda Equina Champions Charity.

The charity strives to raise awareness and offers dedicated support services to patients and families affected by CES.

Claire has a unique insight into the issues surrounding CES, confusion over the red flags, lack of care pathways and factors contributing to the rise in clinical negligence claims.

‘’People living with the aftermath of a cauda equina syndrome must adjust to a new way of life, dealing with incontinence, mobility issues, sexual dysfunction and chronic pain.

Continually the lack of access to psychosexual and counselling services, exacerbated by inadequate care pathways leave many cauda equina patients struggling to cope. The impact on body image, mental health and personal relationships is enormous.

There are currently around 1000 documented cases each year. Through our work we know this number is significantly higher, cases are not always recorded for various reasons. A more accurate figure would be around 3000 cases per year, almost twice as many as spinal cord injuries. Although awareness of the red flags has increased, little has changed for this patient group ‘’