This is the tale of the time I took myself of to Accident and Emergency (A&E). This is not a decision I take lightly as there are a million things I’d rather do. Like saw off my own leg, puncture an eardrum or attend a meeting of the Young Liberal Party. But I’m writing about it because it was a crap experience all around and I’m interested to hear how others have dealt with similar situations.

So, here is the good thing about having type 1 diabetes. I walk into a heaving A&E waiting room. There is blood (the guy in the corner holding his head), guts (a woman near the front throwing up hers), tears (the old woman with her daughter) and silence (most of the other people). I tell the triage nurse the situation which sounded something like I have type 1 diabetes, I have been vomiting for the last three hours, I have ketones of 4.8 and my last BGL was 12.8mmol/l. The triage nurse takes one look at me and opens the door to let me in. Like it’s 1991 and I have a gold medallion to the Underground nightclub.  Straight into the VIP room!

Unfortunately, this VIP room is lit with unflattering lighting and instead of comfy lounges I lie on a trolley.  I am seen by a couple of brilliant nurses who put in an IV line and ask sensible questions and say sensible things like ‘Of course you can check your own BGL. Would you mind telling us what it is when you do it?’ I have two new BFFs and I want to take them out for ice cream – perhaps I’ll wait until the ketones have cleared, though. I tell them that, according to my sick day protocol, I have upped the basal rate on my pump and have given myself a correction bolus which is already working as my BGL is now down to a stellar 7.6mmol/l. Brilliant BFF nurse #1 says ‘Well, obviously your protocol is working. Are you happy to check again when the doctor comes in and let him/her know how things are going?’   

Emergency doctor comes in after a mere 25 minutes (seriously VIP) and starts asking me what’s going on. I repeat the story, report that I’ve just checked my BGL again and I’m down to 6.9mmol/l and he starts by asking the usual questions about diabetes starting with ‘How’s your diabetes’. I never know how to answer that question.  ‘Um, good thanks. How’s your father?’

The next thing he says is ‘We are going to need to disconnect your pump’ to which I respond, ‘That’s not going to happen’. He looks surprised and repeats a little louder what he said. This time I answer with ‘Not an option. Come up with another idea’. Now, I know that I am a nightmare patient. I know that at this point in time the doctor was wishing that I was actually unconscious. But I also knew that my pump was working (see: BGL dropping at sensible rate for proof). I also know that I was polite. Assertive; but polite.

It was then I summoned the immortal words of one of the presenters from a Type 1 in the City event and said ‘I would like to see the endocrinology registrar. Now. Please.’ Trump card!  It’s kind of like lawyer-ing up!

The endocrinology registrar has much more of an idea until this question came out ‘What’s your blood sugar usually?’ Huh? Usually when? At what time? When I’ve done what? When I’m feeling how?

How is that a question? There is no answer. My blood sugar is usually variable. That’s called diabetes.

What happened next was me refusing to disconnect my pump (again) followed by a demand (from me) that the registrar contact my endocrinologist, which she really didn’t want to do. I held my ground and promised that I would disconnect my pump if recommended by my endo.

Five minutes later, the registrar returned to my room, muttered that the pump could stay connected and then she left. I didn’t see her again. I fell back against the pillow, exhausted, emotional and, despite getting my own way, I felt defeated.

I am sometimes accused of making diabetes look easy. It’s not. And when something like this happens, it reminds me just how difficult it is. The outcome of my visit was rehydration, blood tests to check all sorts of levels, monitoring of ketones (which were gone in about three hours) and then I was sent home. Mind you – I did tell the endocrine registrar (much to her astonishment) that I was leaving at 6.30pm, so she only had until then to get me sorted. (The reason for this was that I had to emcee a diabetes information session at the hospital’s conference centre.)

So, apart from five hours in A&E, not too much of an inconvenience.

But the aftermath hit me like a lead balloon. Firstly, I rather arrogantly was upset that I had found myself in that position. Gastro leading to ketones and dehydration is not the most unusual thing in the world, so I’m not sure why I should think I’m above it all. I’m not.

The second thing that upset me is this, (and again, I hope this doesn’t make me sound arrogant). If I have to battle so much at a relatively easy visit to A&E – if I have to pull every trick to ensure that I get what I want the way I want it, how do people who don’t have the same understanding of the system manage? The people who don’t know the tricks. Surely being heard is a basic right in circumstances like these.

I need someone to explain to me how it is possible that it’s OK that every minute of every day I am the one who makes all my own diabetes decisions and yet the minute I walk through the doors of a hospital I am not equipped to do so.

Do you have any experiences in A&E that leave you feeling a little cold? How have you dealt with them?