A matter of experience – by Helen May

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If you were to ask me what I thought of the care I receive for my diabetes, I would probably say something flippant like “I care for myself pretty well considering the resources available.”

I have only lived in one place since I was diagnosed so I have experienced the care from one local team and have nothing much to compare it with. Sure, I’ve read blogs from others but, just like Trip Advisor, most people only write something if it is spectacularly good or spectacularly bad. So if my experience falls somewhere between the two, I think I am getting an average experience.

Sure, when I was first diagnosed (a week after the GP suggested I had a UTI), the diabetes nurse and consultant at the local hospital did a great job of explaining what was happening, what would happen, what Type 1 diabetes meant to my lifestyle, where to look for more information and giving me the confidence to look after myself. I soon realised that the focus for diabetes care in my region was not on Type 1. A short visit to the dietician made that very clear. But when 90 per cent of people have Type 2, I wasn’t surprised.

Roll forward ten years, the care has definitely become the care I give myself. Anything else was an annual check-up with a different specialist each year. I tried to ask questions but soon discovered I was more of a specialist about my diabetes and apart from a pump (which I did not satisfy the criteria for), the treatment had not changed. I still carried on going to the appointments because I saw it as an opportunity to get the results of my blood and urine tests to keep track of my care.

As this was the only experience I had of diabetes care and it was pretty consistent each year regardless who I saw, I assumed it was pretty normal for Type 1 care.

A couple of months ago I had my 13 monthly review (it’s supposed to be annual but they don’t have enough specialists). As usual, I had my pre-appointment blood tests and handed over my “pot of piss”; I gave myself a quick mental check: had I noticed anything different? I have a new job, has that had any impact on my diabetes management? did I have answers to any questions just in case I was asked?

My expectation at the appointment was the same as previous years: not very high. I expected to be told the results, ask if everything was ok and leave. This year, it was different: the specialist started asking me questions about how I managed different situations, how often I had hypos, did I cope ok with travel, … Then she started offering me options for new things: did I want to try a CGM for a week? Was I interested in a pump? Why hadn’t I ever been on a course? (Because it was never offered so I assumed it was not available in my area.)

This was a breath of fresh air. Someone who actually cared about the person with diabetes rather than the results of the blood tests. And the amazing thing is that she is not new: I have just never seen her before.

I have started taking up some of her suggestions. The first was a talk about the insulin pump with no commitment to take it just to learn more. The talk was ok but, I had garnered most of the information from personal research on the internet. What interested me most was the other people at the talk. We came from all walks of life and were all ages but all lived in the same region so I assumed we had all had the same experience of Type 1 diabetes care. I was wrong: out of about a dozen people, I was the only one who had never been on a course; when the nurse explained that all people on a pump had the same specialist so we would have to change, most were worried because they had been seeing the same person for the last 15+ years.

I have no idea why I have had such a different experience: perhaps I fell down a hole in the diabetes care team or perhaps I was doing well enough by myself. But now I have been noticed, I hope my experience will improve and my diabetes management with it.

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