Diabetes and research – are we speaking the same language? – By Richard Elliott

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As scientific and medical research become increasingly important to the health and wealth of the nation, more and more of us are being asked to take part ourselves. This includes active participation in clinical trials of new treatments and health services, as well as more passive support by agreeing to the anonymous use of our healthcare records.

Diabetes UK supports both forms of participation (as you can see here and here), because they are vital for the progress of our own funded research and essential for helping to advance our understanding, prevention and treatment of chronic health conditions like Type 1 and Type 2 diabetes.
As researchers ask for more from the public, and from people with diabetes in particular, it’s increasingly important that research is communicated in a way that is understandable and appropriate to these audiences.

Attending the Diabetes UK Professional Conference in Liverpool this week, I heard a thought-provoking talk from Professor Jane Speight, Director of The Australian Centre for Behavioural Research in Diabetes at Diabetes Australia, who focused on the language that is often used by researchers and the unintended meanings it can carry for people with diabetes.
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Exposure – Helen May


It has been hard to miss the #nomakeupselfie on social media over the last month. Many of my friends have joined in and I have seen photos of some beautiful women with no make up. (There is less from the guys, because they never wear make-up.) Like many, I missed the connection with cancer but I am happy if it manages to raise awareness and money. However, I am saddened that it has highlighted the challenges many women and girls feel about exposing their true self. I think I have less concern about this exposure because I often feel exposed due to diabetes.

There is the flash of physical exposure of belly flesh and flab when I inject insulin. But, today, I am thinking about the mental exposure I feel too.

As my annual check-up approaches, I wait expectantly to have the results of my blood tests exposed and the possible lecture I may get from the specialist about having my hb1AC too high or too low or my cholesterol being too high. Getting it right every time is quite a challenge and, sometimes, I wonder if the healthcare professionals have any experience of these challenges. On one occasion, an obviously overweight specialist told me my BMI of nearly 23 was at the “higher end of ideal”.

But I feel the exposure most when I tell people about diabetes. Whilst I don’t hide it, I realise that when we first meet someone, we form an impression based on the information we gain. I have been on holiday and shared a room with a stranger. One of the first things I feel I should tell them is that I will be injecting as I am conscious that some people have needle phobias. But I then have to follow this up by telling them that I can look after myself – they do not have to worry about sharing a room with someone who is about to keel over because my blood sugars get too low. By exposing that I have diabetes, most people’s first thought seems to be about some weakness I have.
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Diabetes Speed Dating Clinic Type Thing – By Everyday Ups and Downs


Some months ago I found myself looking back over the past few years. We began writing about my diabetes as a family as a result of an unusually nasty hypo. One which made me question whether I was quite as good at managing my diabetes as I liked to think I was. Posts from others in the household have dwindled rather, but I still find things to witter on about, and have unexpectedly recently been invited to contribute here. Lucky lucky you!  Looking back over the past few years, I realise that I have been on a full-on misty-eyed X-Factor-Strictly-Voice-finallist ‘journey‘.

I was reminded about this yesterday while reading a blog post by The Grumpy Pumper about his own story of venturing into the Diabetes Online Community (DOC). I have had similar conversations with Dave (@SowerBee) previously too.
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DPC14 – By @UnderstudyPanc


Last month, I somewhat tentatively made my way up the country to Liverpool, the venue for this year’s Diabetes Professional Conference, hosted by Diabetes UK. I say tentatively because despite a decade of amassed experience I am nowhere near to being a qualified healthcare professional. I worried about feeling like a fraudulent idiot, rubbing shoulders with people who work day in and day for people with diabetes.

I needn’t have been concerned. Far from feeling like the hiding child in a staff room, I really relished the opportunity to listen to lectures and engage with hcps and other professionals in the fields of diabetes care and research. It was encouraging to hear so many clinicians talking about care that stems, first and foremost, from the patient themselves. True engagement and support for a PWD comes, I feel, from putting that person’s needs and hopes squarely at the centre of any treatment or support being planned. Fail to listen to that voice and you fail the person who carries the diagnosis. For that person is not the sum total of their diagnosis. It is a part of them. It shapes their decisions they make daily, but is not the one defining facet of their makeup.
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A Pedestrian Compromise – Helen May


Ooops. I seem to have bought a new pair of shoes. I don’t think I have a problem. It’s not as if a I have a shoe closet: just a couple of drawers with shoes in. Gone are the days when all I needed was one pair of black shoes and one pair of brown shoes. I also need my blue shoes and my pink shoes and my purple boots and my flowery sandals and my …

Whilst, I have no guilt in my recent purchase, I reviewed my footwear collection to check I have a need for them all. I confirmed they are all fit for their various purpose: different colours depending on my outfit; flat shoes for walking to work; warm boots for the winter; sandals for hot weather; heels for going out. Obviously, my “specialist footwear”are beyond questioning: I need walking boots for walking, trainers for running and climbing shoes for climbing.

I also thought I should extend this footwear review to include compatibility with one of my lifetime partners. I don’t mean I checked that the high heels don’t make me taller than my boyfriend: as I am only 5’4″, that is unlikely. This lifetime partner is diabetes. Yes, I see diabetes and I being together for the rest of my life so, when eating or exercising, I make sure my plans don’t contradict my diabetes needs.

With diabetes in mind, I reviewed my shoe collection against the Diabetes UK recommendation. Apparently, as someone with diabetes, my shoes should be broad fitting; have a deep and rounded toe area; have flat or low heeled and fastened by a lace or buckle. Oh dear, no pointy court shoes for work. And are you suggesting no four inch heels for the outfit I planned to wear to my friends wedding? What about my wonderful sandals which are easy to slip off on the beach? Wait, are you going to tell me I shouldn’t walk bare foot across the beach feeling the sand run through my toes?

I felt I needed to sit down and have a chat with diabetes. Like any couple who expect to be together for the rest of our lives, we need to agree some boundaries and some areas of compromise. This is the way I see it: I will regularly moisturise my feet, inspect for blisters and keep my toenails cut. But I will not sacrifice my footwear style to diabetes. I am not willing for diabetes to take over my sartorial elegance down to my toes. Some areas of our relationship may be open to negotiation but on this front, there will be no compromise. Unless there is a change our circumstance.

This reminds me of one of my parents’ friends. She was 91 on Boxing Day. She is mentally very bright and dresses very elegantly. Until recently, this elegance extended to wearing some lovely shoes with 3 inch heels. Unfortunately, after falling over and breaking her wrist, she had to agree that her circumstance has changed: she is not as stable as she used to be. So her heeled footwear has been put aside for something flatter but, equally, elegant.

As for me, I will agree that if, through my regular foot inspection, I notice more hard skin or blisters or bunions, I will reconsider my choose of footwear. Until then, diabetes and I will agree to four inch heels, pointed toes and slip-on sandals. We may have a partnership but, I am in control.

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