The way a nurse responded to my diabetes left me reeling

The only thing that surprised me more about her response to my condition was what happened after I tweeted about it, writes James Moore

NHS waiting lists are currently 7.6 million – the highest since records began in 2007 (Jeff Moore/PA) (PA Wire)

A recent conversation with a diabetes specialist nurse (note that word, “specialist”) came as something of an unpleasant surprise.

“I have a problem,” I said. “My blood sugars are surging in the heat.” She looked at me. “Blood sugar levels go down in the heat,” she said, matter of fact. I stared back, all too aware of the way the autoimmune condition – type 1 diabetes – I’ve had since the age of two has been affecting me. “But mine goes up,” I told her. “It always has.”

What came next left me reeling: “You’re wrong,” she said. “Blood sugar levels go down in the heat.”

Case closed: or, at least, that’s how the conversation ended. But it shouldn’t have done. And if you want to know why, ask any one of the near 20,000 people who viewed – and those who were moved by – this unfortunately very real scenario when I tweeted it out.

It seems that I’m not alone. It isn’t just that there are a lot of other people with the condition whose bodies don’t follow the T1 textbook. Some had encountered this same sort of dismissive response, too.

To be fair, I also had some horrified clinicians responding. The majority of people who treat those with T1 are complete professionals. I’m not trying to pretend otherwise.

But nonetheless, that dismissive encounter isn’t as rare as you might hope – nor is it limited to T1.

A friend of mine with Type 2 diabetes takes one of those drugs affected by pharmacy shortages. It is hard to describe quite how frightening it is to be confronted with the fact that a medication that is truly vital to your health – even your life – might not be available when you need it. It is a constant, prickling fear that blights every waking hour. But when my friend raised the issue with their doctor, they were sent away with: “You’ll just have to deal with it.”

My friend is fortunate in having the means to consult a private physician, through whom they were able to get the drug they needed. But listening to this story, I was struck by the way we are all too often abandoned by the NHS.

It happens to those with other conditions, too: such as my wife and the drug she was assigned to treat her rheumatoid arthritis – another pesky and debilitating auto-immune disease.

My wife was experiencing uncomfortable sinus infections, which she reported to her doctor as a side-effect of the treatment – as you are supposed to – only to find her concerns airily dismissed. Returning home, she checked the leaflet supplied with her prescription which listed sinus problems as a “very common” side-effect, affecting more than one in 10 people. A specialist really ought to have known that.

Women do appear particularly prone to having their concerns dismissed, sometimes with astonishing rudeness. A whole range of sometimes horribly painful conditions are batted aside by clinicians who look down their noses at patients and respond to them in a manner that is unprofessional – even borderline negligent.

You might say, well – yes, but t’was ever thus. And it is true: doctors, nurses or other clinical staff treat patients poorly when they’re seriously poorly is not a new thing.

However, my recent experience suggests that the problem is getting worse, not better – and discreet inquiries with other patients does rather bear that out.

I have a theory as to why. Perhaps it is stress? People working in the chaos of a service desperately short of funds and apparently perpetually on the brink of collapse? The feeling of being undervalued? This sort of thing can seep into the culture of an organisation. But that doesn’t make it right, or acceptable, when people need medical care.

The principle of “free at the point of need” and “putting the patient at the front of everything we do” isn’t worth a bean if patients are treated as an afterthought, an obstruction, a pain in the neck or worse – simply because they have bodies that don’t obey the rules. Especially when those bodies are in pain.

The conversation I began with recounting was the first time I’ve contacted a diabetic clinic – outside of scheduled appointments – in decades. I’m used to handling my condition on my own. But I was on two new types of insulin and I’d lost two stone, so I needed a little advice. My blood sugars were swinging wildly. Instead, I was told my lived experience was “wrong”.

That really won’t do. It is common to see signs around hospitals saying “we will not tolerate abuse of NHS staff”. They should be there. But nor should we tolerate the abuse of patients. The way some of my medically challenged friends and loved ones have been treated lately is verging on that. It needs to change.