Having Adrenal Insufficiency means carrying an emergency injection. I’ve been trying to sort out mine for the past month or so because a part of it expires at the end of September. This isn’t me moaning about the NHS, because even if the system has been throwing up some extra problems, people are still moving quite quickly to help me with it when I ask them to- they’re just as frustrated as me. It’s more frustration about the version we get given here in Europe versus in countries like in America and Canada.
Issue Number 1: It’s not easy to use
I’ve had training on it and the 3 times I should have used it, the prospect of having to use it actually made it more stressful. So imagine coming across me unconscious or in a confused state and having to find it, assemble it, measure it out and administer it as an acquaintance or a stranger? That’s not fair. People with allergies have epipens which you can do even if you haven’t had training. Mine looks like this:
So you have to:
- find the instructions and unwrap everything
- put together the syringe and needle
- measure up 2ml of fluid and put it in the same container as the powder
- Mix the powder up with the liquid
- draw it back up and get rid of air
- Inject me with it
That doesn’t sound too hard on paper, but trust me, when you’re up against a clock and you’re not a medic, it really is.
Issue #2: The powder and liquid expire at different times
Not the end of the world, you say? True. It’s just a case of keeping track of it. But they’re also really hard to sort out I’ve found out. I’m really organised. Other people might not be.
Issue #3: I only need 2ml of liquid
But the NHS only prescribes them in 5ml minimums. So I’ve got to hope that whoever is doing my injection for me reads the instructions that says that and doesn’t give me the whole 5ml. It’d be ok, it just might not work as effectively.
Issue #4: The 5ml liquids available tend to be for ‘physician use’
So the idea being I’d give it over to a medic to do, which defeats the object of having an emergency injection. But this means they’re often made out of glass, which can break more easily than plastic. And gives the person giving me my injection something else to worry about, which isn’t fair. This has caused me the most problems in the past couple of weeks- nobody really knew what to prescribe me when it came close to expiring.
Issue #5: You can get an air embolism if you do it wrong
The nurse training me said this a lot. Which isn’t overly reassuring!
Issue #6: You have to dispose of it safely
So in a sharps box. Which means you’ve got a needle hanging around until the paramedics turn up or unless I’m at home and I can stick it in my box. Again, not the end of the world, but something else for the person giving me it to be aware of.
Issue #7: Stress makes my illness get worse very quickly
I’m pretty calm about ringing ambulances and going to hospital. I don’t have any issue with needles at all. I’ve given myself injections before with autoinjectors and prepared syringes- none of that is the issue. I know when I need my injection or medical help. But the idea of having to do it freaks me out. Mostly because when I need it, I can barely remember my name and date of birth let alone how to set it all up.
Issue #8: You need documents to be able to take it through security points
Not the end of the world, just something else to think about. It’s because the needles are ‘sharp objects’.
Issue #9: It’s not very clear whose job it is to prescribe it
Hospital? GP? I asked and no one was very sure. It’s taken just under a month and a lot of backwards and forwards from lots of people so far just to get the liquid bit sorted.
Issue #10: It’s a lot of pressure for a stranger to manage
If I get scared thinking about having to do it, I can’t imagine what a stranger will feel if they find themselves having to help me. It’s a lot to ask, but also the only way to keep me alive if I need it.
There is an easier version which exists in other countries, where the fluid and the powder are pre-measured, so you push the 2 capsules together and just draw the liquid up into the syringe. A lot of European countries don’t have these. All of the issues are totally manageable, but it’s so frustrating to have to sort them out when there could be an easier version. If it’s not that big a deal to do, why do epipens exist for other conditions? Most importantly: I don’t feel well, and this has been a massive headache that I could have done without recently!