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    Showing posts with label technology. Show all posts
    Showing posts with label technology. Show all posts
  1. An unexpected (CGM based) party

    Tuesday, 12 August 2014

    I do get some very interesting emails on occasion. Some of which come with offers or invitations to various events or interviews. The problem comes when I have to reply and say 'thank you, but I can't'. These are frustrating enough when I get invites that are based in the UK - they're almost always based in London and being as I have a limited income and don't drive, I've always had to turn them down. Frustrating, like I say. But from time to time, I get emails asking if I'll be at this conference, or that conference - always based in the States - and would I like to meet this person, sit in something else. Nothing that I'm certain umpteen far more prolific bloggers than myself don't also receive. My response is always the same - 'Thank you, but I live in the UK and do not have the finances to attend. If an opportunity ever presents itself when they might be in the UK, please let me know.'. Best wishes, hit send. That's usually the last I hear of it and understandably so! But imagine my surprise and my pleasure when a swift reply entered my inbox - 

    'Would you be interested in a telephone interview instead?'

    Why yes. Yes I would! What a great solution! The lovely communications representative and I sent a few more emails back and forth and played some time-zone maths, and set it up.

    Which is how I found myself speaking to Terrance Gregg - the current CEO of Dexcom

    First off, I'll say that it wasn't something I ever thought I would have the opportunity to do, especially away from the ADA conference which was originally the time slot where he would be available. I was very aware of the sort of schedule he must keep and I was very impressed that he was willing to take the time out to talk to me when I was halfway around the world.

    I was struck by how much of a gentleman he was - mostly because he was very patient with me. Honestly, I was nervous and I ramble when I'm nervous. I usually make a point of telling people this, and making them know they're free to cut me off - I'm liable to keep on talking indefinitely otherwise! 

    We talked a lot about the future of Dexcom and CGMs in general in the UK - as I'm sure anyone who is reading this is aware, the differences in healthcare systems in the US and the UK are quite vast, and it is extremely difficult to get NHS approval for a CGM, with self funding being the only avenue for the majority. 

    'Reimbursement landscapes are daunting.' I wrote down as we talked. That's not particularly surprising. We covered some familiar ground for me as we discussed the need for devices, particularly in the UK have to demonstrate a high level of cost effectiveness in order to gain wide-spread approval. 

    Within the NHS that makes perfect sense. When you're funding the many, you've got to make hard choices and something like CGM technology has to prove that it can be effective and cost efficient to make it accessible to more patients. It makes sense, like I say. But when you're waiting for that time when the tech will be more easily available, you can potentially get a bit impatient. I like to temper hope and optimism with facts and realism. What was extremely encouraging was talk of recently received reimbursement in Sweden and Slovenia and that a dossier is currently being prepared for the UK. I wrote down a particular quote - 'the landscape is changing.' - which I think balances things in a way that I favour. Yes the landscape is daunting, but it is also changing. In order to make progress, there's a lot of work that has to be done. 

    I was also encouraged by the attitude to patient engagement that came across from our discussion. I felt a real sense of belief in the importance of talking to your users and listening to what they have to say. I personally don't think a company stands a long term chance unless they do - if a company isn't listening to my interests, then why should I want to use or continue to use their product or service? But I felt not only the sense of importance but a sense of pride in user engagement. If they're proud of that, then I think they can be proud of themselves. At least in my opinion, for what that's worth. 

    We left the conversation with my saying that, for the UK at least, my door, or phone/inbox was always open - I think they have a great products, from what I know of them from reviews, blogs, and all the ways I've come across them. I think they have the right attitude - a plan and long term strategy. 


    However, in the style of a late night JML infomercial for fountain pens that will stab through tin cans....

    But wait, there's more!

    I had a clinic appointment not long after this conversation. Admittedly, I'd been dreading it, but it turned out a million times better than I had anticipated. A HbA1c of 6.9! Almost certainly influenced by hypos, but I'll still take it. No complaints about my weight! Hoorah! But somehow we strayed on to talking about my speaking to Terrence Gregg, and this is where the discussion went - 

    Would I like to do a Dexcom trial, since I already used an Animas Vibe?

    After wondering if I was having my leg pulled, I managed to respond with a 'Yes. Yes I would.'. Would I like to? Getting the ability to switch on the Vibe's CGM function was, as I have put it several times to different people, a bit like having someone offer me the Holy Grail. Something I thought would never happen - magical and unattainable. If I can't afford a few train tickets to London to take up some of the interview offers I've had, then self-funding sensors was never going to happen. So we put a date in the diary. Turns out that Animas had some funding to run some trials. Everyone knew full well I wouldn't be able to carry on afterwards, but they would let me do it all the same. 

    That date in the diary was today.

    I was tremendously excited about the whole thing, up to a point where I apparently surprised the Animas training staff. And she's met me before. Several times. You think she'd have known better. So I'll be blogging about how I'm getting on with this trial. Right now I'm having a bit of a weird day with it, but I'm told that is completely to be expected with a new sensor. General wisdom seems to be that it takes a good 24 hours to learn what you're like. I know that's personifying it slightly, but it seems right.








  2. We humans are an interesting bunch, I'm sure you'll agree. We do all sorts of strange an bizarre things. One thing we do is find personality in the most every day of things. I mean, have you seen Happy Chair Is Happy, as a prime example? 

    So it's no surprise that you constantly come across people in the DOC giving personalities to things - D as a whole, pumps have names, so do lows, highs, CGMS and meters. I haven't got to the stage of naming things myself (apart from numberwang, which is pure quality, obviously)

    I love that we do this. It takes something that can be so sterile, and gives it character. It's all about playing games with our imaginations. Stops us from growing too old, or going too crazy. I guess as well, it stops the gadgetry that we use day to day from being too imposing and 'scary'.

    Now I'm wondering about the names of everyone's kit, and all their characters. Anyone up for a 'parade'? I'll bring the mardi gras beads!

  3. The name of the game

    Monday, 31 May 2010

    Ever had a puzzle that you just couldn't figure out? I've had a few of them in my time. I used to have a Rubik's cube, but I got so fed up of the damn thing that I ended up putting it in a shoebox for Operation Christmas Child. We also used to own a puzzle that was actually a birthday present for my brother one year - it was a plastic box that had 3-D Tetris style pieces. The idea was to take the pieces out of the box, and then put them back in again. Most annoying puzzle ever. I think I couldn't have been any older than ten or eleven when this puzzle arrived in our house. I'm twenty-five now, and no-one in my family has ever managed to solve this thing. 

    Puzzles can be immensely frustrating, so it's completely understandable that sometimes people need help or clues to help them get through the difficult bits. Which is why I'm a huge advocate of testing. 

    The whole management of blood sugar is a huge puzzle - to get it to play fair, you've got to track it and learn to spot trends. Which is why I can't wrap my head around people who say you can test 'too much', or that testing more than four times a day makes you 'obsessive'. 

    I don't see it that way. We're all in the same game here, which is trying to manage this thing the best we can. How are you supposed to spot the clues to help you do that if you don't test? Personally I test at least seven times a day - before each meal, two hours after, and before bed. It quite frequently ends up being more than that. I would never just 'guess' at what my levels were, because I'm a human being, and I'm more likely than not to get it wrong. If I were to try and guess too often, and it turned out I was guessing wrong, what sort of damage could I be doing to myself? 

    No-one likes testing. I mean, come on - it does hurt, and there's no getting round that. It's not like we do these things for fun. So why are people testing more than four times a day doing it? Well, I can't speak for everyone else, but for me, it's so that I can feel that it's me in the driving seat, rather than diabetes. I don't want to leave these things down to chance. I carb count, so I need to test before and after, so I can check I've got the count right. I would also never not check before bed, because I need to make sure that I'm about 5mmol/l (90 mg/dl), otherwise I need to have a snack.

    Aside from this, I add on any time I feel hypo or hyper, before I exercise, before I go out with Andrew on the back of the motorbike, if I'm not feeling well. I've also taken to testing at 15:00 when I'm at the office, as I tend to slump around then, and I want to make sure that I have a snack if it's appropriate.

    Of course, there's only a point in testing if you know what the numbers mean, and know what to do with them. Otherwise, your meter might as well sing Baa Baa, Black Sheep to you. But if you know what the deal is? Well then I firmly believe that then you should have the ability and necessary supplies to test as much as you need to. 

    Would I call that obsessive? Nope, not a chance. I don't think it's obsessive, when it's under the provisos that I've just mentioned. It's proactive. I thoroughly believe that I'm being proactive in looking after my health and my future. We're in a social climate now where we're all being encouraged to take control of our own health and well-being. So when you've got maintaining the best blood sugar management that you're able to, added into the mix, then surely that's just following advice generally given to everyone? After all, it's not easy, and sometimes we all need a few extra clues.

  4. Confessions of a Pump Ignoramus

    Saturday, 8 May 2010

    A fortnight ago, I was fortunate enough to go down to London to take part in festivities for the second birthday of the fabulous Circle D. I had a really wonderful time, despite feeling very rough. The sun shone, and I got to meet some fabulous people, including Northerner from  'Poems from Active Diabetics', Tom from Diabetes Dramas et al, and Siobhan from Click of the Light. It was about as close to a UK Dbloggers meet as we could hope for, really, when it was actually for something else!

    Tom has recently become the (extremely) proud owner of an insulin pump. The last time we met, which was in York in March, Tom had said that he would bring me an infusion site to try wearing, so that I could see what I thought of the whole thing. 

    Well, he did. And we filmed it, whilst getting the dirty stink eye from a woman opposite us. Siobhan is doing the camera work, and I ask you to forgive me for the following:

    A: Being extremely nervous
    B: Laughing rather hysterically
    C: Being a complete wuss.




    The London meet in itself was interesting. I had never had the opportunity to see an insulin pump before. So it was very educational to meet several people there who were all more than happy to show me theirs. On the whole, they were smaller, lighter, and more discreet than I had anticipated them being. I have very small hands, and yet most of them fitted in my palm.

    So at the end of the day, I went away with this on, and proceeded to leave it in for the three days that I'd been told was appropriate. 

    It was a very strange experience. After Tom had put the site in, it didn't hurt, like I thought it might, rather I found it itchy. I don't know whether my skin didn't like the adhesive on the tape, but it itched. 

    Tom had also given me a shower cap for it, so I wasn't wearing the tubing attached to nothing. It would have been another thing I would have been interested in doing, but wearing the tubing attached to nothing just seemed stupid. So I kept the shower cap on. And I showered, and slept and went about my daily business with it on. I intrigued/freaked out/enlightened people (delete as appropriate for the different reactions) with the site. 

    I was terrified of getting the thing wet, or ripping it out accidentally whilst I was asleep. But neither of these things happened, as was proved by I woke up with it still attached, and showering was fine. But I was still conscious that it was there for about 70% of the time. I know that means that 30% of the time I didn't care, or completely forgot, and you would probably get over that if you were actually wearing a pump, not just flirting with the site. One other thing I would hope you'd get over is the urge I found to play with the site. Mostly taking the shower cap on and off. But then again, I'm a compulsive fidgeter. I play with keys, I chew and pull out my hair, and up until recently, I was a terrible nail biter. I don't know whether that would marry well with something like a pump that you shouldn't really fidget with.

    What I was really afraid of though, was taking the site out. I didn't have anyone to help me with that! Was it going to hurt? Could I do it 'wrong' and accidentally leave something in? I was all set to see if I could find something on YouTube to help me, but I thought I'd give it a go solo first, and seek help if I ran into problems.

    Well it seems I had built it up in my mind to be this huge thing, which it wasn't at all. It didn't hurt me any more than removing a plaster. I was surprised to see blood in it, but I don't know why. Makes perfect sense, really. The thing that really had me slapping my forehead and feeling like a prize idiot though, was the fact that what I was removing was actually NOT a needle. Of course it wasn't! But I had always believed that there was a needle inside the infusion site. Like I say, my contact with pumps had been virtually non-existent, and not being in active pursuit of acquiring one myself, I somehow had this misconception. Why would there be a needle? It would be far too easy for it to break off inside you, which would be perfectly horrifying. I guess that goes to show you that anyone can get the wrong idea about something, being as I consider myself fairly well informed on most things diabetes-related. 
    But will this experience, which allayed an awful lot of my fears surrounding pumps, convince me to seek one out for myself? I don't think so. I find the whole thing fascinating, I totally support those out there who are after a pump for themselves, and maybe in a couple of years I'll join them. I can see the pros. I'm getting tired of injecting, because my technique seems to have got a bit rubbish as of late, and I'm finding it hard to find a spot or an angle which doesn't hurt. Yet, I don't think I'd be ready any time soon to make the leap of being tethered to something 24/7.

    I'm currently taking part in a course at my hospital called 'Living With Type 1 Diabetes' (catchy!), and apparently we're going to get a chance to have a look at some pumps, and talk to a couple of people using them. So my pump education continues!

  5. Earlier today, Leighann on D-Mom Blog posted about how her family all run Macs, and how all diabetes kit seems to run on PC's.

    Sorry Mac users, but that makes me very happy indeed. Now obviously, I want everything that we use to be available for everyone who needs it, regardless of their operating system of choice. I'm not wanting to deny you the right to download readings. That would be both stupid and mean. But I really hate Macs. 

    I don't like things by Apple. I just don't get them. PCs just work so much better, and for half the price. This is an odd time to be posting my pro-pc-ness, being as my laptop is on the fritz at the moment. However, I tend to hear many, many more reports from friends with Macs about how software isn't compatible, or how their shiny shiny product has broken down and has to go back to the Apple store to be fixed. 

    So when the iPhone launched, I wasn't exactly bothered. The iPad, I believe is fairly pointless. But a friend's iPhone came up in conversation over the weekend. I mentioned a great steal I'd got on a pair of leather trousers for using when riding Andrew's motorbike. We came to the conclusion that I'd got them so cheaply because the sizes had been posted in European sizes, and no-one knows what the heck they are. As it is, they were a size smaller than I would have ideally liked, but they fit ok. So he said how he had a measurement converter on the iPhone. Thinking that I was posing a challenge, I asked if it would convert mmol/l to mg/dl. Mainly because I'm sick of having to write in conversions with a pencil in most of the diabetes books I own. You crazy Americans and your strange measurements! (I love you all really)
    Turns out that yes, it did! Right below sizes for men's shirts. I was suitably impressed with this. I would very much like this function on my phone - an old cast off of Nick and Kieran, after I put yet another phone through the washing machine. But would something like this convince me to switch to an iPhone? It's cool, but no way. I'm Mitchell, not Webb.