News • Healthcare communication

Don't call it diabetes: Campaign for life-saving name change

A Leicester medic has successfully campaigned to change the name of a rare but potentially fatal condition, with the backing of businessman and TV personality Lord Sugar.

It follows the case of Kane Gorny, a 22-year-old from London, who went into hospital for a routine hip operation in 2009 but died because staff failed to give him medication and fluids for an existing condition he suffered known as diabetes insipidus – a treatable condition where the body produces too much urine and isn't able to properly retain water. Had Kane received the correct medication and water following his hip operation, he would not have died.

Professor Miles Levy is a consultant endocrinologist at University Hospitals of Leicester (UHL) NHS Trust and Honorary Professor at the University of Leicester. He is part of a working group dedicated to improving patient safety and awareness of the disorder among non-endocrine health professionals. Together, they have now successfully pushed to change its name to arginine vasopressin deficiency or (AVP-D) to prevent medical staff confusing it with diabetes – commonly associated with lower or higher glucose levels. Now they have the backing of high-profile personalities Lord Sugar, who has already tweeted about it and England Rugby Union ace, Ben Kay.

We hope that endocrinologists around the world will use the new terminology AVP-deficiency in an effort to improve care for patients with this condition
Miles Levy

Professor Levy said: “AVP-D is linked to the pituitary gland and occurs when areas of the brain that produce or store the AVP hormone are damaged as they were in Kane’s case. The condition, which controls the amount of urine made by the body, is easily treatable with medication known as desmopressin and fluids. It’s tragic that Kane was not treated as he should have been and he lost his life when something so basic as giving him fluids would have helped. Unfortunately, among non-specialists the previous name given to the condition, led to confusion. The name change we’ve campaigned for provides greater clarity and cannot be confused with something else. To medical professionals it also now indicates both causation and treatment.”

A study co-led by Professor Levy, published in The Lancet Diabetes & Endocrinology of more than 1,000 patients with AVP-D, found that 80% of them had the condition confused with diabetes mellitus, leading to mismanagement. “We want to avoid further tragedies from taking place and raise the profile of the name change to AVP-D and the condition across the medical profession to ensure Kane’s death all those years ago isn’t in vain,” said Professor Levy. “This has been a truly collaborative and global effort involving many countries and we’re very grateful to all who have worked on it, including patients, colleagues and the global authority on clinical health terminology (SNOMED CT). We hope that endocrinologists around the world will use the new terminology AVP-deficiency in an effort to improve care for patients with this condition.”