Tuesday, 14 October 2014

Type 1 Diabetes: Let me manage my condition

I've spent the past few days working on some type 1 diabetes cards, at the request of a group of parents of children with the condition.

I knew little about the condition, but as I read through the parents requests I realised that actually, the condition might be different, but the communication problems were the same. Assumptions and disbelief. And well intentioned things which REALLY don't help - even trying to force me to do something which I know I can't. These are barriers that I have encountered - and ones which I know the stickman keyring cards can help break down.

The scenarios described, like people not believing that a child with diabetes could enjoy the food at a birthday party, and simply taking their plate from them. Or assuming that they caused their condition through an unhealthy lifestyle etc were not ones which I had experienced personally, but they resonated with my experiences - and next thing I know I've finished the drafts in 2 days rather than the week I had planned!

So here are the drafts:
The text for the first one isn't easy to read in this image, so I've copied it here:
"I have Type 1 Diabetes, a life-long condition where my body can’t regulate my blood glucose levels. It is not caused by diet or lifestyle, but an autoimmune reaction destroying my insulin-producing cells. I don’t have to follow a special diet, but I do have to take varying amounts of insulin. Treating episodes of high or low blood sugar immediately is really important for my long term health so I may need to check blood glucose, inject insulin or eat a sugary snack. Please don’t ask me to leave, but let me treat my condition wherever I am. Any delay will make things worse. I know what to do. It is my normal." 
(each card is 110x80mm, laminated, durable plastic, and come on a keyring.)

As I once heard someone comment, the keyring cards aren't for people who can't speak, so much as for people who won't listen.

A way to state requirements with confidence - and in a way which people accept far more easily than when spoken, and are equally effective with both adults and children. I'm still not sure why. Perhaps it is because they are professionally printed and official looking. But I wonder if Terry Pratchett was right when he wrote "Laughter helps things slide into the thinking."

And while discussing the cards with one of the parents I realised that one particular aspect of their treatment was very familiar. For several months (or possibly years, I can't remember!) I had to inject myself 3 times a day. And sometimes I really wanted to say "actually, I need it NOW and don't have then energy to waste getting to somewhere 'private' just to make you feel 'better' about a young person needing injected medication!" - so it became a more general 'injections' card.


So if you have any feedback, suggested improvements or errors spotted, please let me know by this Thursday - as I will be sending them off to the printers then :)

10 comments:

  1. Would it be possible to add "have a wee" or "go to the toilet" on the high blood sugars card, as that is one of the main problems when high and one of the things people don't realise. Otherwise, these are fantastic and my two children with type 1 diabetes would love them.

    ReplyDelete
    Replies
    1. I already have a 'bathroom break needed' card available, but will try to add the 'go to the toilet more often' on the 'high bG card :)

      Delete
  2. They're fab, Hannah, thank you. I developed type 1 diabetes as an adult as a result of having ME (which mucks up the immune system) and I'm still getting used to the odd looks I get when I inject in a public place, so would definitely use that last card.

    One thing I'd suggest - could you add any or all of "dizzy", "shaky", and "sweaty" to the symptoms of low blood sugar? I don't get any of the symptoms currently listed except for going pale, but I get all of those regularly, and they are common symptoms. I only get lethargic or drowsy with high blood sugar so I think that card could be a bit confusing otherwise.

    Juliet x

    PS I'm a long-term lurker - have been meaning to comment for ages but have been too busy moving house! - love your cards and often recommend them to friends with ME.

    ReplyDelete
    Replies
    1. Yes, I'll tweak the symptoms list on the 'low blood sugar' one :) Thank you.

      Delete
  3. These are fab. I know the first one (about "i have type one...") is long already but was thinking about the (awful) situation where food is taken away from a child because they "shouldn't" be eating it -but may have already taken insulin for it! this is actually really dangerous. I wonder if there is a way of slotting in something about needing to know what I am eating to take the right amount of insulin? dont worry if it doesnt slot in becuase i think these are fab over all! :D xx

    ReplyDelete
    Replies
    1. That's a good point Beth. I was hoping the 'I don't need a special diet, I take varying doses of insulin' line would cover that, but I'm not sure it is strong enough. I will see if I can re-word it to make it clearer. Although that might have to turn in to a new card because I'm guessing in that scenario a very clear one-liner is probably the most effective answer. An "I have already taken my insulin for this food, so if I don't eat it I will get ill very quickly" type of thing.

      Delete
  4. Hi Beth. These are great! I have one suggestion - the card bottom righthand corner - the one about "I have tested by blood sugar and it is too low". The image is misleading because a hypo needs to be treated with fast acting glucose such as in sweets or fruit juice. A sandwich wouldn't bring the blood glucose up quick enough initially as it is slower acting carbohydrate. So could you put a picture of some sweets instead? It would really be eat or drink something sugary. So lots of people have a carton of fruit juice or some lucozade. Thanks, Deborah

    ReplyDelete
    Replies
    1. Excellent point Deborah. Someone else suggested that too, so I've now replaced the person eating a sandwich with a drinks can and sweets :)

      Delete
  5. This comment has been removed by a blog administrator.

    ReplyDelete

Feel free to comment, but please note that any offensive or inappropriate comments - including advertising - will be moderated.