Yesterday, Melinda Seed wrote a powerful piece about a session at ADC. Please read her post here to get an idea about why she is so angry. (Rightly so, I might add.)

I saw Mel just after the session. I’d not been in there, but it was clear from what Mel was saying, that the centre in question was doing a huge disservice to people with the diabetes they are meant to be helping. (For the record, when I wrote this post about why diabetes conferences can be challenging for PWD and why we really need our tribe around us, I was writing about moments like these.)

The part that really shocked me is that at this centre, HCPs could make the decision to discharge people from the service for ‘non-adherence’. The idea that people with diabetes are thrown out of healthcare because they are perceived to not be ‘adhering’ to a treatment plan (most likely, a generic plan that has not been set up for the individual PWD) is cruel. And it stems from the idea that people not following this plan don’t deserve healthcare.

This has stuck with me, because I had a conversation with someone this week about the whole issue of people with diabetes ‘not looking after ourselves’ after he used that language to describe someone with type 2 diabetes he knows well. ‘He doesn’t care,’ I was told.

I thought back to some of the most difficult times I’ve had since living with diabetes. I know full well that one of the first things to go when the going gets tough is my own diabetes management. When all that stuff was going in, the diabetes management plans were so beyond my comprehension or understanding, or I simply couldn’t see why it was relevant to me or how it was meant to be helping me. At those times, I wasn’t doing what I was expected to do. To outsiders, it may have looked that I didn’t care.

But I hadn’t stopped caring. I never, ever stopped caring.

In fact, the exact times that someone may have looked at me and said ‘You are not looking after yourself’ or thought that I was not following management plans are the times – more than any other – that I have needed someone to be on my side; not to point at me and tell me I was messing up. And certainly not to decide that they would no longer provide me with care.

I don’t know what we need to do to get the point across to others that the realities of diabetes management are relentless. Even when we pare back our management to the mere basics, there is still a lot to do. When things start to slip and slide, we are not being ‘non-adherent’, we haven’t stopped caring. And we certainly don’t deserve to be treated with contempt by being kicked out of a healthcare service.

Still caring…