The afternoon before he died of dehydration, Kane Gorny was in such agony, he called 999. “The police came to the hospital, only to be told by the staff that Kane was a troublemaker,” says his mother Rita Cronin, 65. “By that point, Kane had been begging for water for hours. He was so delirious from dehydration that he had pulled the curtains off the cubicle, and was screaming ‘get me out of here.’ When I arrived at the hospital, two security guards were holding Kane down, and the nurses were standing at the end of his bed, laughing at him.”
But Kane, 22, was not a “troublemaker.” The student and keen amateur boxer was suffering from a rare medical condition which meant his body could not retain water and his body was dangerously high in sodium. A simple daily tablet – of desmopressin, a medication Kane had been taking before his admission – as well as sufficient fluids, would have kept him alive. But the staff treating Kane at St George’s Hospital, south London, did not understand his condition.
A 2012 inquest at Westminster Coroners’ Court found that Kane’s death had been caused by a “cascade of individual failures”. Now, a new initiative by the UK’s top hormone doctors makes it significantly less likely such fatal errors will happen again.
Miles Levy is a consultant endocrinologist at University Hospitals of Leicester Hospital Trust and honorary professor at the University of Leicester. “When you think of people dying from dehydration, you think of third world countries, people trying desperately to get water,” he says. “But this has been happening in NHS hospitals.”
Between 2009 and 2016 there were four reported deaths in England resulting from omission of desmopressin, and a further 56 reported incidents where dosing errors led to harm to patients. Another study showed that half of all hospital trusts have made mistakes in this area.
The problem has been in the confusion caused by the name of the condition.
Until recently, this rare but entirely treatable disorder went by the name of diabetes insipidus. “It’s not surprising that when the word diabetes comes up, people think of sugar diabetes – probably because of the obesity epidemic,” says Prof Levy.
“Sugar” diabetes and prediabetes affects one in five people – Type 2 diabetes, which is linked to obesity, is becoming increasingly prevalent. But the condition suffered by Kane affects only one in 25,000. The two conditions share certain symptoms – thirst, and the passing of large quantities of urine – but that is all they have in common.
Thanks to a campaign by Prof Levy and his colleagues, diabetes insipidus has just been renamed as arginine vasopressin deficiency – or AVP-D. But the name change came too late for Kane.
“Kane was a fit, healthy, lovely boy – very into exercise, and a keen amateur boxer,” says Cronin, an NHS administrator who lives in south London. Kane was the youngest of three: Cronin is also mother to a son aged 41 and a daughter, 42.
Kane’s health problems started in 2008, when was studying a social work access course at college and doing shifts in Waitrose for extra cash. “He started acting weirdly,” says Cronin, who at the time was separated from Kane’s father and is now in a new relationship. “All of a sudden, Kane felt all his strength had gone: he was too tired to go running or the gym. This was really unlike him – but like a typical boy of his age, he batted off our suggestions to go to the doctor.”
On Father’s Day in August 2009, Kane “started vomiting black stuff” and was rushed to St George’s by ambulance.
The hospital that was to be responsible for Kane’s death, initially saved his life. “Kane had a benign brain tumour, which was pressing on his pituitary gland,” says Cronin. The pituitary is pea-sized gland in the base of the brain which releases life-preserving hormones and controls the function of the other glands in the body. “He underwent immediate surgery to remove the tumour, later followed by a course of radiotherapy.”
A strong young man, Kane started to make a full recovery, but was left with serious, life-long consequences. The damage to his pituitary gland meant that he now had AVP-D, which meant his body now produced too much urine, and he wasn’t able to retain water.
“The solution to controlling Kane’s condition was very straightforward,” says his mother. “All he had to do was take one tablet a day.” Desmopressin, a synthetic form of the hormone vasopressin, would act on Kane’s kidneys to preserve water and prevent him becoming dehydrated. “The doctor drummed into Kane how vital it was to take his daily desmopressin,” says Cronin. “Kane also knew how devastating it would be to miss it, that his life would be in danger if he did.”
Three months after Kane’s surgery, he started to experience pain in his hip: a side effect of the treatment for his tumour. His medical team decided he needed a hip operation, so Kane returned to St George’s. “This was entirely routine and we weren’t worried about it at all,” Cronin explains. “We knew of course it was vital that Kane continued to take his desmopressin. We actually offered to give it to him ourselves every morning, but the nurses said no, this wasn’t allowed – they would have to administer any drugs themselves.”
The operation went well. “The night after he came round, Kane rang his friend and told him he was settling into a comfortable night watching Britain’s Got Talent and Man United,” says Cronin. “I went to bed, happy in the thought he was recovering, and in safe hands. But the next morning I got a frantic call from Kane saying: ‘Mum – I need a drink, I really need a drink!’ Because Kane was incapacitated from his operation, he couldn’t get out of bed himself – but he said the nurses were unwilling to bring him water.”
When Cronin arrived at the hospital, she was faced with the spectacle of a giggling crowd of ward staff standing around her son’s bed. “Kane was definitely acting out of character, shouting and rambling,” she says. “It didn’t dawn on me that he had not been given his medication. I had no idea his behaviour was a symptom of dehydration and I was actually concerned his brain tumour had come back.” Kane’s hip specialist was off work that day, and the endocrinologist who knew about his pituitary issues was on holiday – the junior doctors seemed unable or unwilling to explain what was wrong.
The ward care assistant reassured Cronin that her son had drunk a small amount of water, and so she returned to work. “Then, a few hours later, I got another call from Kane telling me he was so thirsty, he had called 999,” she says. “I made my way to the hospital, the police came and went before I got there and the duty team called the psychiatry and neurology departments for advice.”
The latter didn’t arrive, but a duty psychiatrist arrived, and gave Kane a large dose of diazepam, a powerful sedative.
“Before he fell asleep, Kane did an enormous pee in a bottle: there was so much fluid, it was overflowing,” says Cronin. “The liquid was the colour of plain water. I took this as a good sign – that he was probably drinking enough. But I am not medically trained and I’ve since learnt this should have been a huge warning to the team looking after him.”
Kane was left to “sleep off” his agitation in a side room and no staff came to see him. The next morning, Cronin was alarmed at her son’s appearance. “He was staring at the ceiling, his lips and tongue were alarmingly swollen,” she says. “I said to the nurse on duty, ‘is he OK?’ She just tutted and said: ‘He’s had his breakfast.’ I later discovered this was a lie. So I went back into the room and held Kane’s hand, crying.”
It finally dawned on Cronin that her son might not have had his medication. The team batted her away until finally she managed to persuade a senior doctor to take a look at Kane. “The next thing I knew, people were rushing into the room, and I was told to wait outside,” says Cronin. No one took the time to explain that this was the resuscitation team, arriving to try and save her son’s life.
Eventually, Cronin heard the voice of an endocrinology consultant – a specialism in Kane’s pituitary condition. “He said to me: ‘You’d better go in and see your son, he’s dying.’ The doctor sounded absolutely furious,’” she recalls. The consultant’s fury was with the duty medical team, but in that moment, it felt to Cronin that his ire was directed at her.
By the time Cronin went into the room, Kane was no longer alive. “I was in such shock that I rang my boss and said: ‘You’ll never guess what happened, they have killed my son,” she says. The family were utterly shocked and devastated. How could this happen on a British hospital ward in the 21st century?
Kane’s death certificate said he had died as a result of a “water deficit” and “hypernatraemia” – a medical term for high sodium levels, usually caused by dehydration. The case was deemed serious enough for the coroner to suggest Cronin involve the police. “Kane was undoubtedly let down by incompetence of staff, poor communication, lack of leadership, both medical and nursing, a culture of assumption,” said the corner at the inquest, three years later. The hospital admitted neglect, and apologised.
Among the issues raised at the inquest was a discussion of the appropriateness of the name diabetes insipidus. Similar cases followed: in 2018, Charlie Edwards, 48, went into a coma in a south-western UK hospital after staff were unable to read a consultant’s illegible notes and reduced his desmopressin: Edwards never regained consciousness. The hospital has apologised for a “failings with care” and a coroner’s case is imminent.
Finally, in 2022, a group of international experts including Prof Levy published their proposal for a new name for diabetes insipidus. The change to AVP-D was announced last year by the clinical terminology register, followed by the World Health Organisation’s diagnostic book. Medical textbooks and online searches are also now being altered to reflect the new name.
The next step is to raise greater public awareness of AVP-D so that fewer fatal mistakes are made. “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 desmopressin and fluids would have helped,” says Prof Levy.
Cronin is happy to see the change. “Hopefully, the letters AVP-D mean that doctors will stop, think and look up this unfamiliar condition,” she says. “I will never get over losing my son but I’m glad that we started the ball rolling to change the way this illness is treated. It will mean his death wasn’t totally in vain.”
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