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Future of Diabetes Survey

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Stefan Diabetes UK

Stefan Diabetes UK

Active Member
Relationship to Diabetes
Over the next few weeks we're having conversations with hundreds of people across the UK about what it’s like to live with diabetes now, and what you hope / fear it might be like in the future.

And we'd love to hear from everyone on here too

That’s why today we are launching our Future of Diabetes survey, and we’d be very very grateful if you could spare 10 minutes or so to fill it in 🙂

http://www.smartsurvey.co.uk/s/duk-fod-survey-forum/

What people tell us will help us understand what the biggest issues and concerns are for all types of people living with all types of diabetes (or caring for someone with diabetes), and will go in to our Future of Diabetes report, published this autumn.

But it's not just a survey. We want to keep the conversation about the future of diabetes going on the forum too. So over the next few weeks we’ll be asking you to give your thoughts on one question about diabetes each week.

We’ll share the first question next week, so keep your eyes peeled for that 🙂 Look forward to hearing what you think!

There's more info about the Future of Diabetes project on our website, or if you have any questions just let me know.

Many thanks in advance to anyone completes the survey. It really will be very helpful as we fight for better diabetes care and support, as we'll be able to show what issues matter most to people living with diabetes.
 
Thanks for this Stefan. Completed.
 
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Done, but some questions didn't have enough options ie the courses. We were offered one. We turned up, the lecturer didn't!
 
Ditto said:
Done, but some questions didn't have enough options ie the courses. We were offered one. We turned up, the lecturer didn't!
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Thanks to everyone who's responded already, much appreciated 🙂 And thanks for the extra details @Ditto , though disappointing your lecturer didn't come to your course! We will be taking any extra feedback posted in this thread in to consideration as we build the report, so feel free to leave any comments that don't fit easily in to the survey here.

And of course we'll be asking six questions over the next couple of weeks, which should allow us to get a bit more detail on everything 🙂
 
Done 🙂

A couple of comments I couldn't put in the survey -

For the question about the one thing I could change about my care I put none of these - the one thing I would have liked is access to a CGM (and ideally a pump) as soon as it became apparent that I'm very insulin sensitive and have loads of hypos.

I've never used any of the options for emotional or psychological support, not because they weren't available, but because I didn't need emotional or psychological support. Practical support yes; consultants who actually listen to me yes; emotional support no!

I've put not at all interested for the question about going to a course - this is because I wouldn't be well enough to attend one, not because I wouldn't find a course interesting (I might be interested in an online one).
 
Done
I said I wasn't interested in any courses but would of liked one on low carbing.
 
I said a one stop clinic because what I mean by that, is for ALL my general healthcare. I already have blood and pee tests twice a year for the hospital pump clinic - why do I need yet another one - for the same tests! - at the GP surgery - there are plenty of other things too at my GP surgery I don't like - they're good care-wise generally but the organisation is fairly useless all in all LOL

I've had mental health probs and of course that affects diabetes control but there was no NHS help or advice available for that, I had to join a forum to find out what to do. However I did have 'personalised' CBT for the panic attacks and stress from everywhere else, and it helped. I'd want it to be available again - should I ever need it. However, I do get general encouragement from my DSN and have for a long time - from different ones - and value that - feel I could go to her with a prob, you know?

It's over 10 years since I did the local version of BERTIE - and I'd quite like to go on a refresher course, too. I've suffered in the past from the NHS assuming just because I'd had D for so long - that I already knew things that nobody had ever told me - and I want to prevent that happening again, if I can.
 
Jenny, I get a print-out of my all test results from whoever's ordered them, and take them with me to appointments - this saves GP ordering same tests as Diabetes consultant and vice versa (and also means I know all my results, not just the ones they happen to tell me, which I find very useful). If GP and consultant both want tests at about the same time, I get the nurse who does them to amalgamate the requests and only take one lot of blood.
 
Ah well - your local service is far better organised than it is in Coventry where we are in the Dark Ages. No test results available to the patient until patient contacts whoever requested them. If GP - unless one has an actual appointment, one has to ring on Tuesday between 12 noon and 2pm, to enquire. Because it's not a medic you can speak to - they can only access results the GPs have requested. They have no access to the hospital system. I usually get a deep sigh through the earpiece when I want the actual numbers. I totally gave up asking for print outs many years ago as it seems to be such a bloody difficult task for any of them to achieve.
 
Oh, ours is the same, no access to each other's results at all and no results available to patients unless they ring or make an appointment, that's why I ask for the print-out. It doesn't help that my GP's surgery and my diabetes care are in different counties! They do all seem to have entered the 20th (sic) century now and got themselves printers though!
 
Very interesting points Juliet & Jenny, definitely something we'll take a note of. And I think it'll come up in one of our 'Future of Diabetes' discussion threads we'll be doing in a few weeks 🙂
 
Thanks, Stefan 🙂

I'd agree with Jenny about wanting all my health care in the same place too - ideally somewhere small and local - but I wouldn't want all my appointments on the same day, as I wouldn't be well enough to do more than one at a time! I once went into the hospital for several on the same afternoon, and by the time I got to the last one I couldn't remember my own name (literally - phlebotomist asked "name?" and I looked at her blankly and said "er ... ") 🙄
 
Ooh, another point I thought of when I was filling in the form and then forgot 🙄 ... please can diabetes UK make a big attempt to educate GPs about diabetes? The level of ignorance is astonishing!
 
TheClockworkDodo said:
Ooh, another point I thought of when I was filling in the form and then forgot 🙄 ... please can diabetes UK make a big attempt to educate GPs about diabetes? The level of ignorance is astonishing!
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I must say agree with this and the practise nurses too, my one is pretty good but I find I'm having to teach her at times.
 
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