This one's short - I promise!
I want to start by para-phrasing that (disputed (scroll to the bottom)) Margaret Mead quote...
Never doubt that a small group of thoughtful, committed people with diabetes can change the world. Indeed it is the only thing that ever will.
OK, it's a bit of a hatchet job on the original, but hopefully the sentiment is pretty clear. Being at the Diabetes UK Professional Conference this week has reinforced my long held belief that the people actively working in the field (be it consultants, DSNs, researchers, dieticians, GPs or any healthcare professional) want to make a difference to the lives of people with diabetes.
But I've also had the opportunity to look closer to home and spend some time with some people with diabetes, both those speaking out as the small (but increasingly loud) patient voices, and those here blogging with me. As I'm sure we all know, that peer-power is unquantifiably important and even just a small dose of it can be inspiring.
The end of the second day marked the moment where the patient speakers had done their duty (at least those I know), and we celebrated with a few drinks in the bar at one of the hotels. What struck me immediately was the passion and enthusiasm that the people round the table spoke about their experiences of diabetes and diabetes care. It's not surprising given how passionate everyone in the #doc is, but it's so refreshing to hear the words come out of people's mouths instead of reading them on blogs or in tweets.
Looking round the table, it's hard to not have faith. To believe... to know that things won't be the way they are now forever because there are people out there that want them to be better... that know that have to be better.
I think we expect that from healthcare professionals. They've chosen this field because they believe they can make a difference, and from what I've seen, they absolutely are working tirelessly to bring about that change.
But to look around a table at eight to fourteen people (depending on exactly when you looked) and hear what they have to say is inspiring. It makes you want to stop whatever it is you're doing, listen, and go away and do something to make a change. Then you remember that there are hundreds of people you could put round that table who share that drive, passion and desire to make things better for people with diabetes.
You can't help but know that it will get better, because these people, because you want it to. I'm proud to know those people and I can't wait to see what they're going to do next.
Showing posts with label change. Show all posts
Showing posts with label change. Show all posts
Thursday, 3 March 2016
Friday, 18 January 2013
The insulin pump
This blog first appeared on the Diabetes UK website on 18th January 2013
As I mentioned in one of my previous blogs, I'm taking part in a clinical trial. It's called the REPOSE (Relative Effectiveness of Pumps over MDI and Structured Education) trial and is basically design to determine whether or not insulin pump therapy is more effective at treating adults with T1 diabetes. The trial splits particpants into two groups, half are randomised to receive an insulin pump and half continue with their daily injection regime. Everyone then attends a DAFNE course. You can read more about the trial on the National Institute for Health Research website.
I've been randomised to the pump half of the group and yesterday I spent the afternoon learning how to load operate, fill and attach the pump. It's currently filled with saline so it gives us chance to get used to wearing the device and having the cannula attached without actually using it to medicate. It's a Medtronic Paradigm Veo pump which you can find out more about on the Medtronic website
My DAFNE course starts at the end of January and I'll switch over to insulin the night before it starts. We'll then go through the DAFNE course getting support for the first week before we're left to fly solo.
I wrote in my own blog before I'd had my hospital visit about how I felt about making the change. I'm going to discuss my first impressions of having the pump and the "induction" process here.
Firstly there's a LOT to take in. To get the pump operational, you need to fill a new reservoir, tell the pump to rewind itself (similar to retracting the plunger on a pen), attach the infusion set (i.e. tubing) to the pump and insert the cannula into your stomach. Of course it's one of those things that will become second nature pretty quickly, but I imagine the first time I try it by myself will take a while.
Secondly, as I alluded to above, there's a lot of stuff needed to make all this work. The picture below shows you the contents of the goody bag I brough home from the hospital
As you can see, there's a lot more consumables required for a pump than for a pen!
Inserting the cannula was a bit daunting. As I think I mentioned before, I'm not actually very good with needles and I had a slight flash of wooziness as I was doing it but thankfully that passed. It's never good to be the one who passes out during the induction!! I remember having the same feeling the first time I used an insulin pen and now I don't think twice about that. I think removing the cannula for the first time is probably my last real challenge but as they stay in for 2-3 days at a time, I've not got that far yet!
I don't really notice the pump during the day which surprised me. I thought I'd be a lot more conscious of the device (currently clipped onto my belt) and the cannula than I actually am. There's a bout 2 feet of tubing which can be a bit tricky to conceal but it's nothing major. It was a bit of a broken night's sleep last night but that was to be expected. I'm going to try running with it tonight and I'm ordering a pouch I can wear to keep it a bit more concealed so I'm less likely to knock it.
Whilst the overall induction process took a lot out of me, I woke up feeling positive about the change. I've definitely got a steep learning curve ahead of me, but I see it as something to embrace rather than be afraid of. I'll write a follow up after DAFNE when I've been using the pump to actually control my diabetes and I'll be able to give an appraisal on how well the first week or so has gone.
As I mentioned in one of my previous blogs, I'm taking part in a clinical trial. It's called the REPOSE (Relative Effectiveness of Pumps over MDI and Structured Education) trial and is basically design to determine whether or not insulin pump therapy is more effective at treating adults with T1 diabetes. The trial splits particpants into two groups, half are randomised to receive an insulin pump and half continue with their daily injection regime. Everyone then attends a DAFNE course. You can read more about the trial on the National Institute for Health Research website.
I've been randomised to the pump half of the group and yesterday I spent the afternoon learning how to load operate, fill and attach the pump. It's currently filled with saline so it gives us chance to get used to wearing the device and having the cannula attached without actually using it to medicate. It's a Medtronic Paradigm Veo pump which you can find out more about on the Medtronic website
My DAFNE course starts at the end of January and I'll switch over to insulin the night before it starts. We'll then go through the DAFNE course getting support for the first week before we're left to fly solo.
I wrote in my own blog before I'd had my hospital visit about how I felt about making the change. I'm going to discuss my first impressions of having the pump and the "induction" process here.
Firstly there's a LOT to take in. To get the pump operational, you need to fill a new reservoir, tell the pump to rewind itself (similar to retracting the plunger on a pen), attach the infusion set (i.e. tubing) to the pump and insert the cannula into your stomach. Of course it's one of those things that will become second nature pretty quickly, but I imagine the first time I try it by myself will take a while.
Secondly, as I alluded to above, there's a lot of stuff needed to make all this work. The picture below shows you the contents of the goody bag I brough home from the hospital
As you can see, there's a lot more consumables required for a pump than for a pen!
Inserting the cannula was a bit daunting. As I think I mentioned before, I'm not actually very good with needles and I had a slight flash of wooziness as I was doing it but thankfully that passed. It's never good to be the one who passes out during the induction!! I remember having the same feeling the first time I used an insulin pen and now I don't think twice about that. I think removing the cannula for the first time is probably my last real challenge but as they stay in for 2-3 days at a time, I've not got that far yet!
I don't really notice the pump during the day which surprised me. I thought I'd be a lot more conscious of the device (currently clipped onto my belt) and the cannula than I actually am. There's a bout 2 feet of tubing which can be a bit tricky to conceal but it's nothing major. It was a bit of a broken night's sleep last night but that was to be expected. I'm going to try running with it tonight and I'm ordering a pouch I can wear to keep it a bit more concealed so I'm less likely to knock it.
Whilst the overall induction process took a lot out of me, I woke up feeling positive about the change. I've definitely got a steep learning curve ahead of me, but I see it as something to embrace rather than be afraid of. I'll write a follow up after DAFNE when I've been using the pump to actually control my diabetes and I'll be able to give an appraisal on how well the first week or so has gone.
Tuesday, 15 January 2013
Standing on the edge
"Come to the edge, he said. They said: We are afraid. Come to the edge, he said. They came. He pushed them and they flew." - Guillaume Apollinaire (1880-1918)
Today is a strange day for me. It's the last full 24 hours that I'll be medicating my diabetes with multiple daily injections (MDI) for the foreseeable future. Tomorrow afternoon I'll be switching to an insulin pump as part of a two year clinical study aimed at determining what is more effective at treating people with Type 1 diabetes.
I won't go into too much of the detail about the study here. I'll be writing a blog for Diabetes UK about that later this week (and I'll post it here as well) so if you're curious, you can read that (or drop me a line on Twitter @Broomowl).
This blog is more focused on that greatest of intangible things - feelings.
I genuinely don't know how I feel about it to be honest. Overall I'm pretty positive about it I think. As I understand it, the pump will allow me greater control over my condition and allow me to alter my medication much more proactively around things like diet and exercise. There's also some altruistic benefit I guess as it will help determine whether or not an insulin pump is truly beneficial for people with diabetes. This should mean that, in the future, people being newly diagnosed with the condition will receive the best treatment possible.
If you've read a few of my blogs before, you're probably familiar with the concern I have that at some point, my daughter will also develop diabetes. I think the odds are roughly around 1 in 7 so I suppose I'm partly doing this for her as well as me.
The other side of the coin is the fear and the doubt that accompany any lifestyle change. For the most part, I control my condition pretty well. I don't struggle to understand what to do or how to comprehend the science behind it all. I struggle with self discipline. I'll have some chocolate because I'm feeling a bit down, or I'll forget/not bother to test my blood as often as I should. It's lazy and there's no excuse for it - I'm my own worst enemy.
But when all that's said and done, with the correct discipline, I can manage my condition pretty perfectly, which is something to be proud of. But it's taken me a number of years to get to that level and from tomorrow I'll have to start from scratch.
Thinking about it rationally, the principles aren't going to change overnight and the science will remain the same. I'll just have to learn a new way to practice it. I don't think it can be quite as terrifying as it was nearly 12 years ago. I'm also going to be part of a group of people all in the same boat, so I know I'm not alone.
My only other concern is how it will affect the day to day stuff I take for granted at the moment. I haven't figured out how I'm going to sleep with the pump attached to me yet (though I suspect "not very well" would be a good answer for the first few nights). I also don't want it to stop me playing games with my daughter because that's obviously a hugely important part of my life.
I think that overall this will be a good change for me once the learning period is over. There's a chance I might take to this blog a little more frequently to 'think out loud' about it but as a mechanism for ordering my thoughts a little, the blog really helps. I'm also lucky that I've got a group of close friends that I know I can rely on to help me when I need it.
Thanks for taking the time to read this.
Andy
Today is a strange day for me. It's the last full 24 hours that I'll be medicating my diabetes with multiple daily injections (MDI) for the foreseeable future. Tomorrow afternoon I'll be switching to an insulin pump as part of a two year clinical study aimed at determining what is more effective at treating people with Type 1 diabetes.
I won't go into too much of the detail about the study here. I'll be writing a blog for Diabetes UK about that later this week (and I'll post it here as well) so if you're curious, you can read that (or drop me a line on Twitter @Broomowl).
This blog is more focused on that greatest of intangible things - feelings.
I genuinely don't know how I feel about it to be honest. Overall I'm pretty positive about it I think. As I understand it, the pump will allow me greater control over my condition and allow me to alter my medication much more proactively around things like diet and exercise. There's also some altruistic benefit I guess as it will help determine whether or not an insulin pump is truly beneficial for people with diabetes. This should mean that, in the future, people being newly diagnosed with the condition will receive the best treatment possible.
If you've read a few of my blogs before, you're probably familiar with the concern I have that at some point, my daughter will also develop diabetes. I think the odds are roughly around 1 in 7 so I suppose I'm partly doing this for her as well as me.
The other side of the coin is the fear and the doubt that accompany any lifestyle change. For the most part, I control my condition pretty well. I don't struggle to understand what to do or how to comprehend the science behind it all. I struggle with self discipline. I'll have some chocolate because I'm feeling a bit down, or I'll forget/not bother to test my blood as often as I should. It's lazy and there's no excuse for it - I'm my own worst enemy.
But when all that's said and done, with the correct discipline, I can manage my condition pretty perfectly, which is something to be proud of. But it's taken me a number of years to get to that level and from tomorrow I'll have to start from scratch.
Thinking about it rationally, the principles aren't going to change overnight and the science will remain the same. I'll just have to learn a new way to practice it. I don't think it can be quite as terrifying as it was nearly 12 years ago. I'm also going to be part of a group of people all in the same boat, so I know I'm not alone.
My only other concern is how it will affect the day to day stuff I take for granted at the moment. I haven't figured out how I'm going to sleep with the pump attached to me yet (though I suspect "not very well" would be a good answer for the first few nights). I also don't want it to stop me playing games with my daughter because that's obviously a hugely important part of my life.
I think that overall this will be a good change for me once the learning period is over. There's a chance I might take to this blog a little more frequently to 'think out loud' about it but as a mechanism for ordering my thoughts a little, the blog really helps. I'm also lucky that I've got a group of close friends that I know I can rely on to help me when I need it.
Thanks for taking the time to read this.
Andy
Subscribe to:
Posts (Atom)