Tuesday, 13 October 2015

Freestyle Libre - Moving Pictures - Part 1

Well hello there!

Just occasionally I have a gander at the stats behind the blog to see what brings people to my mutterings. I have two posts that consistently rank as the most read and they both relate to the Abbott Freestyle Libre. You can find them here and here and I wrote them last year when the Libre was first launched. Since then I've bought plenty and you may remember James had one on and highly recommended it when we went running with the Medtronic 640G and SmartGuard.




Every detail in those posts might not be covered here so if you've got any questions it could be worth checking there first of all.

Anyway after giving video blogging, or vlogging as the cool people call it, a go earlier in the year with the 640G I thought it was time to resurrect the camera and give it another go. Added to that my co-star kept asking me when we could do it again too!

So below you've got me introducing the Freestyle Libre and showing how to insert and start it off. 

Please have a watch then pop back here....




As I said that was part 1 and part 2 will follow towards the end of the 14 days so if you've got ANY questions you'd like answering either drop me an email, leave a comment below or on YouTube and I'll try and answer them in the next vid.

Thanks for reading and I hope you found it helpful.

Dave

Saturday, 16 May 2015

The Power of Communication

Welcome back.
As always I'm writing about diabetes today. Again. However this one is for anyone with a long-term medical condition. What works for diabetes works for other pains in the arse too.
I'm often rambling on about how great the Diabetes Online Community is and how it gives you the ability to connect with people who can share the frustrations and annoyance at living with diabetes. 

It also frustrates me that there are potentially vast numbers of people with diabetes who are still travelling along life thinking that everyone else with diabetes has got it mastered and they are the only 'bad diabetic'. 

I'm very fortunate that by doing this blog I'm occasionally contacted by someone who is reaching out for the first time and wanting to feel that they are not on their own. 

I wanted to share with you an example of this as it's made me feel warm inside at how their life has changed. (Although everything is anonymous I have the person's permission to share this story). 

Back in January I got an email from someone who was reaching the peak of frustration with their diabetes. Amongst others things they said to me was:

"I was diagnosed with Type 1 Diabetes in 2013 and feel absolutely defeated! My glucose control is fairly, to put it bluntly, mental. I see my consultant every month (even though it should be every 3-6) and I do everything he tells me, yet he won't give me the go-ahead for a pump despite my conscious efforts still leading to poor control." 

This person had only been diagnosed a couple of years ago but was getting more and more upset at how they were being treated by their healthcare team and wanted some advice on whether they had any chance of turning it around. Through exchanges of emails we quickly agreed that they weren't useless and that to move forward they needed to own their own numbers and if they weren't getting the care they needed then this could be challenged. 

To be fair to this person, they pretty much knew as much as me but I gave you them the confidence to not be ashamed of anything and challenge where it was appropriate. 

I was also very fortunate to be able to signpost them to other sites and groups for further support. In this case I mentioned:
INPUT Diabetes
GBDOC
OurD

This week I received another email from them that just filled me with happiness:

"I feel like singing off of a rooftop as I have met a couple of people my age in my area with Type 1 and it's absolutely invaluable and indescribable how it feels to talk to someone who 'gets it'. You have really opened my eyes to the diabetes world out there and I am ever so thankful! I've met some absolutely wonderful people. Yay!"

Through sending one small email this person now has a local peer to peer support network - which is a fancy way of just saying 'group of friends close by'. 

In the space of five months they've turned their approach to diabetes around and by connecting with someone else they've changed their future for the positive. My role wasn't much really as I just gave a few tips and pointed towards other groups that would give them the specific detail they needed to make any changes needed. From this they owned their diabetes again and went looking elsewhere to connect even more.

I feel very fortunate to have been involved but now know that for it to be truly successful this person has to encourage others in the same way. The diabetes community is huge but at the same time small. For some people speaking online and ultimately face to face with other people with diabetes is just not for them. That's fine. But there are plenty of people who don't connect through not knowing about it or a fear of being judged. It's really not like that!

My journey into the online world started in a similar way with the help of Mike at Every Day Ups and Downs and Tim and Alison at Shoot Up or Put Up.

There are plenty of bloggers and writers out there and if you're reading this thinking that you'd love to connect or get help but don't want to be judged or made to feel useless then don't hold back. Most blogs have a 'Contact' button, so use it. Find writers who you like the writing of and let them know it. If you have a look at the links on the right of this page there are a few to start with. It's that simple. At the very least it will confirm to us that we're not only writing for close family - Hi Mum! Without sounding like Billy Graham or Barry Scott it could change your life in such a positive way.

Thank you so much to the person I've been quoting today for allowing me to share and their job now is to encourage others. The power of a community of peers to change individual lives for the better cannot be underestimated. 

Thank you, you and yes you, for reading. 



Friday, 15 May 2015

Animas Sports Weekend 2015

Last weekend involved a trip to the fifth annual Animas Sports Weekend at Loughborough University. 

After hearing and reading such positive reviews of previous years I knew that demand would be high so as soon as I found out applications were open I filled in the form and got it sent off. Thankfully I was in the first 50 to apply and I'd secured a place! Excitement built over the months and with typical coincidence my biggest bug of the summer arrived the day before. After a little weeping and moping around I realised there was nothing I could do about it so I might aswell just enjoy it anyway! 


I arrived at the Burleigh Conference Centre at about 2pm in advance of the 3pm registration. After getting the keys to my room I went and did a quick unpack before nervously going downstairs. Although I'd met a few people elsewhere before the weekend already and communicated online with a few more I'm not a natural for walking into a room of strangers talking and just diving in. So with a few nerves I went back downstairs and started chatting. That's pretty much how the weekend continued whenever I needed to go into a room. There was always someone there to chat with and share experience and pick up a few tips. 


You might be able to see me lurking at the back of the photo below. I'd obviously messed up the dress code. Those in green t-shirts were official Animas Heroes and those in blue were Animas staff and volunteers. Slowly I shrunk into my blue t-shirt and got it changed at the earliest opportunity into my white delegates shirt.




Next up we went into our first seminar of the weekend. This was led by the always knowledgeable Dr Ian Gallen and gave a fantastic grounding of information that would be used through the weekend and now in everyday use.



The 'classroom' sessions were always great in that discussions on real-life experiences were mixed in with qualified advice. At this point I'll let you know I'm not going to paraphrase or try and repeat what was said. But I will point you towards the website set-up by Dr Gallen to give advice on diabetes and sport - http://www.runsweet.com/

Following the afternoon seminar we retired to refresh before dinner that evening. The food was marvellous and I found myself sharing the table with many great people including a delightful lady called Ellie. An experienced mountain runner she was an endless source of fantastic tales including self-teaching a diabetes dog (more of those later) and then taking the dog skiing!

Saturday was always scheduled to be a busy and so it proved to be. An early breakfast (7am on a Saturday!) was followed by another seminar led by Dr Alistair Lumb who provided further advice on insulin and carbohydrate management when exercising.

Next up came the practicals. These were to be done at the sporting facilities around Loughborough University. The bus trip on the way highlighted what fantastic options for sport are available there. On the way we passed games of many sports in action including cricket, hockey, football, tennis, netball and quidditch!

The delegates had been split into four groups. I was in group A and we paired up with group B to do spinning first. For those not up on the lingo spinning mostly involves sitting in lines on an exercise bike getting shouted at by the incredibly fit instructors at the front of the room and trying to keep going at the rhythm of the pumping music.

Here's me looking fresh and ready for action. Thankfully there isn't an 'after' photo to compare with.


After the spinning we had a short warm down and then moved on to running. Up until this point my blood sugars had been behaving and I was feeling quite confident as we moved outside. Running is what I like to do the most of any exercise but the spin had really taken it out of me. Rather than taking it easy thinking about the run ahead I'd gone all out and my fitness levels meant quick recovery was going to be a challenge. 

As we headed out on the run we split into three groups. In the interests of self-preservation I chose the middle group. This meant we did a steady 5km in about 31 minutes. A few minutes rest for testing in the middle for safety and hypo correction meant we returned not too out of breath but exhausted enough to feel a little like Magic below.


Magic is a bit special. Magic is another example of a diabetes alert dog and is owned by Claire. Magic lets Claire know when her blood sugar is going too low or too high. In the instance below Magic is sharing our relief at the end of the exercise. For now!

My blood sugars on the run dropped to an almost inconvenient 3.1 during the run but had recovered to 5.5 by the end. Not ideal but thanks to the morning seminar I knew the cause precisely. Too much insulin on board.

Next it was time to jump back on the bus to return to the conference centre for lunch. This time everyone was watching the carbs and trying to work out the best way to refuel without causing blood sugars to fly high. I'll admit to failing badly here. My BG went up to 15 and decided to stay there for the next hour. This led to a knock-on problem that we'll come to later.

The next seminar was all about nutrition and was led by an expert nutritionist. As she focused on food only it was interesting learning specifically about diet without many tie-ins to insulin delivery. I really liked this hour and Candice did a great job of keeping everyone interested in the post-exercise, post-lunch slot that could have easily been filled with sleep.

After nutrition came a trip back to the sports hall. On the way we passed a sport that I've never seen before but so much want to do!


Zorb football (soccer) has to be in my future at some point. 

Anyway we were on our way to do circuit training and continue to our practical application of what we'd learnt so far. I did say I wouldn't be passing on any tips but this is where I got wrong so I'll explain why. Firstly I'd been shovelling in insulin for the previous 90 minutes to try and correct my lunchtime high. This meant that by the time we arrived in the sports hall for the circuit training my blood glucose had arrived at 8.1 but I had too much insulin still active. Tied to this I'd misunderstood some advice earlier in the day. In common with a few others I'd wrongly guessed that the upcoming exercise would be short-term anaerobic meaning that my blood glucose had the potential to rise. What actually happened was that the high intensity exercise was prolonged so this turned it into aerobic session meaning that blood glucose would drop.


Sadly for me this led to a very quick drop and I had to dip out of the last round of the circuits. The huge advantage of this weekend was the ability to try different things and if it all went a bit pear-shaped there was plenty of expert support around help. In this instance one of the dietitians James kept a watchful eye while I guzzled down the Lucozade to get my numbers back above 4.0 mmol/L (72 mg/dl).

I will say that again the student from the university who led the session was outstanding and fully accommodating to allow participants to hydrate and test at regular intervals. Their enthusiasm and goodwill was unending and are another group from the weekend who deserve a lot of praise and thanks.

After the circuit training we returned to the hotel for a short rest before dinner. It's worth mentioning here that in every moment of non-exercise there was always chance to speak to either my fellow participants, the heroes or the staff about living with diabetes. For me that meant I could speak to Drs Gallen and Lumb about very specific questions I had and they both gave great advice whilst listening to what I thought too. This for me was priceless and worth the trip alone.

Dinner on Saturday evening was preceded by a talk by the wonderful Roddy Riddle who is living proof that diabetes shouldn't hold you back from anything. After his pre-dinner speech I had the greatest fortune to be sat with him at dinner and talk about some more of his past and future challenges ahead. Truly inspirational. Have a read through his site linked to above and then have a look at his next challenge here. 350 miles across the arctic! Even writing that down is mind-blowing!

After dinner was a small awards ceremony with many celebrated including a certificate for one participant in the weekend who'd only been diagnosed for two weeks. I can't imagine what a rollercoaster he'd been on up to Friday but I'm sure by the time he left on Sunday he knew that although it might not be easy, nothing was beyond his reach.

Much wine followed and considering the exercise we'd all taken part in, insulin juggling and wine drinking Magic's owner Claire kindly volunteered to do a phone round at 3am to anyone who wanted a wake-up call for a blood test. Very generous and appreciated by those who took up the offer I'm sure. 

Early to bed for me (01:30) but not before I'd chance to catch up with a few more fantastic people and pick up some tips and "don't ever do x" advice. Oh and a few more glasses of red wine.

The next morning was a lie in (8am breakfast, 9am start) and a final seminar to recap and a chance for me to say a personal thanks to a few people. Sadly because I had to return home for some very important non-diabetes stuff I was running out of the door at 10:15 and didn't get chance to speak to everyone I wanted to. So please accept this blog as a thank you for your time, advice and conversation whether you were with Animas, a hero or a delegate.

A lot of people over the weekend experienced blood sugar levels a little higher than they'd normally be happy with. This can be explained that along with all the gorgeous food we were also trying to manage the adrenaline being released. Personally I was so excited to be in this environment that I know my blood sugars rose because of this. This is another example of how keeping the blood glucose line as flat as possible is always a challenge in new environments.

The charge for the weekend is £150. Before I signed up I thought this was steep and wondered if it was fair. Wow! How wrong could I be? Two nights in a 4* hotel, full board with a few glasses of wine on Saturday night. Add on to that worldwide respected experts giving group and one to one advice and the access to world-class sports facilities and you've got an absolute bargain. And the final priceless benefit was the ability to mix with over 50 other people with diabetes and a dog to share horror stories, achievements and comedy moments.

To maintain the intimacy and quality of the program numbers are limited to fifty delegates. But priority is always given to first time attendees. So if you've not been before and you do any form of exercise I would thoroughly recommend it. 

As a Medtronic pump user I was a little nervous going into the weekend that everything would be about Animas and pumping. It wasn't at all. There was a lot that was focused on insulin pumps but at the same time there were plenty of delegates who were on multiple daily injections and they got plenty of value from the weekend too. In relation to the brand of pumps, there were many different manufacturers present and apart from some light-hearted Animas promotion there was no offence taken by anyone at my (super-duper) 640G. Added to this there was a variety of glucose measuring devices on show. I had the Enlites to go with the 640G pump, some had Dexcom sensors to go with their Vibe pumps, others had standalone, Dexcom, there were a lot of Freestyle Libres on view but the vast majority of delegates were happily using finger prick blood tests. Once again an example of each person having different needs and preferences.

Once again I'll say thank you to Animas for putting the event on and to all the staff, heroes and delegates I spoke with thank you for your time and thoughts.

Now I need to get the forms for deed poll so I can change my name and go back next year!

Friday, 17 April 2015

Episode 8: The 640G Without SmartGuard

Welcome back!



This week's photos come courtesy of a couple of weeks a go when on the way to work a stunning sunrise over Ingleborough was simultaneously replicated on my CGM graph!

Just a short written post this week as most of the detail is covered in the video blog below.

This week I've been looking at the day to day usage of the pump and meter. As I discussed in Episode 1 there are lots of cool features but at the end of the day it's the simple stuff that's important. So I've looked at the Contour Next Link 2.4 Meter, how you give insulin for food (bolus) and also set your background insulin (basal) levels.

Look out for Martha's blood glucose estimating skills. Maybe I can market a MGM (Martha Glucose Monitor)????



Apologies for the indulgence of biscuit eating but in the interests of a proper test we needed some nice food to bolus to!

Thanks for watching and please leave your comments and feedback. These are always welcomed along with requests about what to feature next.

Take care,
Dave 

Thursday, 9 April 2015

Episode 7: Ropes, Rides and Inversions


Welcome to episode 7 in my series of video blogs - or vlogs as the kids call them - about the Medtronic 640G pump system.

This week's edition is a wonderfully eclectic mixture touching on a wide range of subjects and for the focused ones amongst you I'm afraid it's not all about the D! We've got travel reviews, weather phenomenon, rope fun and the usual cuteness hijacker at the end!

So have a look at the video below and then I'll fill in the gaps and also post some more of those fantastic cloud images.


Thanks for viewing. For the Martha fans she loves watching herself on the TV so every time I tell her someone has made a nice comment she starts to prepare her Oscar speeches for years to come!

Anyway, first was a trip down to Tamworth. We stopped in a standard chain hotel that did exactly what was expected of it. We had planned for a meal on the Friday night and after being out and about in the afternoon it was expected we'd have a couple of drinks in the bar before returning to get changed and then popping back for our reserved table at the restaurant. Well that didn't quite happen. After the couple of beers we got very comfy and just stayed out. This was a drinking challenge but my research into the effects on blood glucose of alcohol continued. I'm dedicated! The meal for me was a simple (but well cooked) steak and chips with which I made a decent attempt at carb counting using Carbs and Cals and a carb counting resource - great book and app!

The next day saw us at the Drayton Manor theme park which provided thrills and spills for everyone. As I said in the video I made a deliberate act to not worry too much about my glucose levels but I knew I had SmartGuard as a back-up if I did drop. And yes it came into action a couple of times. I disconnected the pump for the looping 'coasters so I didn't suffer any g-force induced extra insulin doses. It might not have been necessary but better to be safe than sorry. Overall I stayed upright and my average was decent for the day even if the highs and lows would suggest otherwise.

Monday for me had two linked things to make it memorable. On the way up to Honister the fog was very solid in places. Although the weather forecast was good it still caused a few doubts on the drive. However, once we'd driven out of Keswick and started to rise up Honister Pass the sun appeared and the views became spectacular.

The cloud stayed below the car park until just before we got kitted out with harnesses and helmets for our climb. The journey up from the centre to the starting point lifted us up above the cloud again and the views became even more amazing as can seen below with the cloud inversion captured well in the photos taken by our guide.




Our guide for the day was Adam a combined experienced climber and thoroughly pleasant chap. After I help my hand up at the start answering the "any medical issues?" question there was no panic on his side and he let me look after myself. The action shot of the 640G was my request and this gave another chance to discuss it's strengths and also how a T1 who worked there might benefit from it.


My previously mentioned 80% basal did the job perfectly all morning keeping me between 7 and 9 for the duration. I had a few of my favourite sweets on the penultimate rest but this was for the energy boost not because my levels were low. This was proved by everyone else gladly accepting the opportunity to grab a couple too as they needed a glucose boost too.

In truth, because of how I managed my basal rate SmartGuard wasn't needed on the activity but the presence of a reliable CGM number on the screen was incredibly useful. And knowing that if I did drop I'd be covered was a massive reassurance. Stopping to test wouldn't have been impossible but it would have been significantly inconvenient. And at times impossible whilst I wasn't letting go of anything for fear of falling backwards and testing my carabiners and harness!

If up in the English Lake District I'd thoroughly recommend a visit to the top end to visit Honister Slate Mine and take part in the Via Ferrata Extreme activity for some great views and knee trembling fun.

As weekends go, this was a pretty special one and sharing it with family and close friends made it even better. Diabetes was there as it always was but the help of the 640G gave me a chance to really not make it the number one focus of my life. I'm certain this shouldn't be the reason for getting one but as an occasional consequence I think this is a good thing. Diabetes takes a heck of a lot of time (as mentioned here) and sometimes even the most motivated need some time to recharge and just forget it. For me that's made easier at the moment not having too worry too much knowing that I'll either get bounced back up when low or alerted if I keep dropping or rise too high. A definite with for CGM and SmartGuard.

So I've just passed two thirds of the way through my 64 days. If Medtronic are reading I still believe they've named this experience wrongly. To fully match the 640G name I need to trial it for 640 days. It makes sense really and in the interest of a proper experience I'm willing to sacrifice myself for the cause. Whether you want to watch another 84 vlogs is another question. What the next third will bring I'm not sure but there's definitely time for some more tech reviews with the new Contour blood glucose meter and looking at the pump without the CGM element.

One last comment is that I've taken delivery this week of some Quickset pump infusion sets with the shorter 45cm (18 inch) tubing. I'll be trying one out tomorrow for the first time to see if I can minimise and maybe win the battle with door handles across the country!

Thanks for reading as always. Share, comment and feedback so I know I'm telling you what you'd like to know about.

More again next week.

Dave







Tuesday, 31 March 2015

Episode 6: 64 days on MiniMed 640G: Running with SmartGuard

Hello there!



Thanks for coming to visit the latest instalment on tales from the land of Minimed 640G.

For the observant ones amongst you you'll notice we've gone from Episode 4 to Episode 6 without number 5. Well 5 was a video blog only about CGM basics and can be found here. Worth watching, even if I do say so myself. 

This week I made a second attempt at going for a run whilst on video and this time I managed to not turn the cleverest bit of the pump off. So it worked. I was very fortunate that James from Open Adventure came along too and helped to keep me going and also do his Jeremy Paxman impression.

So watch the video and then come back for some more thoughts.



That was an example of me using the pump in a way that's not ideal but proving to the extreme what the SmartGuard could do. For me running normally would involve a suspension of insulin before starting, some carbohydrates pre-run, a few sweets along the way and then some careful monitoring afterwards. The difference the 640G has made to my exercise is mostly in the post-run time. Previously I'd be concerned about a later drop in blood glucose level and this meant lots of extra testing and treatment. Now I'm more confident to leave the pump to do it's stuff as it will protect from the lows. 

From the exercise point of view I'm off to a Diabetes Sports Weekend in May when I hope to learn more about how to handle the pre and post run highs and lows.

Hopefully you're enjoying my blog pieces on this piece of kit and I've been getting some very nice comments which I'm very grateful for. This week I hope to grab some photos of maybe even some video of the 640G in action while I'm attached to a thin wire on the side of a cliff. Follow this link to see what I mean. And yes, we are doing the extreme version. Why did I think this would be a good thing? I've no idea!

And then next up I want to have a look at what the 640G offers when you strip away the CGM elements. As I've mentioned before full-time use won't be that common in the UK until it gets NICE approval and even then, will probably only be needs based. And I'm fairly certain I won't meet that criteria so it's time to open the wallet. Which in turn means if/when I get the 640G permanently I probably won't have 365/24/7 CGM usage. So how does it compare to the Veo and also to other pumps out there? As I've only used the Veo before I may need some assistance with the comparison. All volunteers with assistance are welcome!

If you've got anything you want me to cover then either leave me a comment here, on the videos or via Twitter.

Finally here's some more links to other great vlogs I've watched recently.
Firstly there's John's tales of drunken adventures and occasional shirt removal. Shameless!
Next up we have Laura answering questions from other people with diabetes about her 640G whilst simultaneously juggling degus!
And lastly pop over to have a watch of Emma's fantastic video on her CGM kit bag. The obvious things are the best ones and I can't believe I'd never thought of using velcro. Genius! Well done Emma and it's a great video.

Have a great week and see you soon!

Dave


PS As a quick final note this blog's picture comes courtesy of my 24 hour CGM profile that is recording a maximum of 10.2 mmol/L (183 mg/dl) and a minimum of 4.1 mmol/L (73.8 mg/dl). This was almost identical to yesterday and they both rank up there with my best ever CGM 24hrs!

Wednesday, 18 March 2015

Carpe Diem and All That For Local Diabetes Care


So these pages recently have been all about pumping and more specifically the 640G. Whilst I know this interests many, I’m keen to keep a more general feel to the blog now and again and a few hours last night gives me the perfect chance to do this.

The event I attended at my local hospital was about a proposed new diabetes centre for the surrounding area. The ‘Patient Conversation’ was billed as an opportunity for patients to put across what the team currently do well and what can be improved upon. Along with a few others from a local diabetes group I attend, I went along to really try and make a difference. This should be an opportunity for local diabetes care to step back and look at everything they do to see what they do well, what they do badly and what they don’t do at all.

Being the good boy scout that I am I made a few notes beforehand and went along to see what was being proposed.

We were grouped into tables of roughly five to eight and together we put our thoughts down on to paper and answered the four questions of the night.  The questioning was good and open about what we’d like to see from the centre and also what can be improved with current treatment.

Overall a common theme was coming through the evening as we answered the questions and fed back table by table. The healthcare professionals we meet with at every appointment are fantastic (except Barney obviously!) and their hard work and dedication will be what makes any new centre work even better. On the flip of this process and organization needs improving along with taking this opportunity to make some relatively simple changes to improve the lives of people with diabetes locally.

A simple example of what works well and what doesn’t is getting to speak to the people you need to. On appointment day it’s not unusual for me to see the consultant and also squeeze in a meeting with the diabetes support nurse (DSN) and dietician at the same time. However contacting someone when away from the hospital means leaving an answer-phone message with the DSNs that will be listened to the same day (if Monday to Friday 9am to 5pm) and you normally get a call back the same day or the next. But when leaving the message you’ve no idea if or when you will get responded too. Likewise email responses are, what’s the word, ah yes, intermittent. And out of hours; you’re flying solo matey.

Obviously as this is the local NHS, resource is always a constant issue and we were reminded during the night that people are being stretched as far as they can. I fed back that I understood this but this has to seen from the other direction. Whilst the HCP is running around saying “I’m busy, I’m busy” I’m sat there waiting for an hour, looking at my watch thinking of the work building up back at my office and watching the emails come in that I need to deal with urgently but can’t because I’m sat on an uncomfortable chair and don’t have a decent phone signal. Being a person with diabetes takes time as I’ve touched on before and if I had a choice of hobby, this wouldn’t be it!

Through the night some fantastic yet simple ideas were coming out. For example, move the consultants desk to break down that ‘headtecher’ style barrier to communication, put up a noticeboard with posters of local support groups to enable peer to peer support, text alerts for appointments, same day HbA1c tests where currently it takes a few, remote appointments such as via Skype for those who find it hard to travel, a coffee machine in the waiting area with diabetes literature (Balance etc) to generate conversation etc.

I kept bringing up again and again the subject of social media and peer support. It’s hard to judge but I got the feeling the heads were being nodded but the historical fear of ‘nutters on the net’ still exists. The presentations given at the recent Diabetes Professionals Conference show that online support is a significant aid and encouragement to better self-management and to ignore or dismiss it at the stage would be foolish. I really do hope I’m wrong on how I think this will go. There were enough people with diabetes in the room that were there because of meeting others that showed if you can encourage it you will get a much higher involvement and therefore far less ‘did not attends’ on the appointment list. Paired with this I’m sure people in the room (including me) would be also willing to help provide some simple pointers (such as Kev’s great leaflet) for people to connect with other local, national and international people who understand what they are feeling too. On a local level we NEED to engage with those better. Some people don’t want to tweet, Facebook or blog. That’s fine. But they must at least know that these avenues exist.

Throughout the meeting we were asked to write our thoughts down and these would be taken away and fed into the decision making process. This must be applauded as connecting at any level can only help to make the proposed centre more successful going forward. Indeed some of the ideas already on the slides pre-prepared for a summary at the end matched the feedback we gave last night. This shows that the thinking is going in the right direction. Great!

The key question now is what is going to happen next? I have a very real fear that last night was an exercise in ticking boxes and if the decision makers were asked in the future if they had consulted they can say yes.

Some of things discussed don’t need a new centre building; they just need the process tweaking. And by tweaking this process it may help to ease the burden on the wonderful DSNs rather than adding to it.

I hope with a passion that this is just the start of the consultative process and as well as looking locally at what’s desired they can look nationally at other diabetes centres to find best practice and excellence in each strand of the diabetes journey.


This is the chance to redefine local diabetes care for a generation. Let’s do it! Let’s do it together!

Tuesday, 17 March 2015

Episode 4: 64 days on MiniMed 640G: Failed Experiment

Hello there!

Now it's week three of my 64 day trial of the Medtronic Minimed 640G insulin pump system I really wanted to see how useful it can be in terms of exercise.

You can see my 'success' by clicking through to the video below followed by some handy hints from my assistant.

Episode 4: 64 days on MiniMed 640G: Failed Experiment

For the Saturday you can see from the graph below it's wasn't one of my most successful 'being the perfect person with diabetes days'!



Thanks for reading and watching. And questions or comments please add them below or to the YouTube channel.

Dave



Sunday, 8 March 2015

Episode 3: 64 days on MiniMed 640G: Smart Guard

Welcome back. 

Following last week's introduction to my 640G system that you can read and watch about here, this week saw me getting more used to it.




The big selling point for this new pump system is the Smart Guard insulin control function. You'll find more about it in the video below but in summary the pump predicts when you are going low and cuts the insulin supply and then restores it when you start to come back up again. It sounds pretty cool and for me it's been working really well in my first two weeks of usage.

The second part of the video blog (or vlog as the kids call it) looks at the pricing of the Enlite sensors. Obviously this is entirely based on your location. So for me I'm considering the UK only where CGM use is normally not paid for by the NHS and therefore for continued use with a compatible pump I would need to buy the sensors. And yes, I did drag in a little helper as I needed some help with the maths :)




As promised here's a link to the facts behind SmartGuard

Hope you enjoy the video and please come back next week when I plan to have a good look at the bolusing now on offer and how this has changed in the new pump!

Before you go also have a look at Laura who gives her spin on the SmartGuard. And also John who's preparing to get drunk!

Have a good week!

Dave



Saturday, 28 February 2015

Episode 1 (and 2): 64 days on MiniMed 640G: Saying Hello

Welcome back! Or hello if you're new to my pages!

So today we are saying "Hello, Hallo, Guten Tag, Salve, Salut, Buon Giorno, Hola, Marhaba and Здравствуйте" to the Minimed 640G system!



Following a meeting with three very nice Medtronic people on Wednesday I managed to get my hands on the new Medtronic Minimed 640G system which incorporates a pump, CGM and Bayer blood glucose meter. Previously I talked about my visit to Medtronic here where I first saw the system and at the time cheekily asked if i could borrow one.

So in a change to my usual waffling in words I've done the same in film. Twice!

First up are my thoughts both before and after getting the system.




If you want to find out some more detail behind the facts in the video have a click through to these links:
Next up we have a small video I also created with the assistance of a little helper. The problem is I know the addition of my helper makes the content irrelevant as she's the star of the video! Anyway the subject covered in the clip is changing a Quickset infusion set on my lower back.




Thanks for reading and watching and for more information have a browse over to John and Laura's pages for their thoughts on the same project.

Please come back next week for the next instalment!

Dave
Disclaimer: Medtronic have provided me a 64 day loan of the 640G system and this includes the pump, enough CGM sensors for 64 days and the latest Bayer Link meter. They aren't paying me to write this blog and my only commitment to them is to do a weekly video blog of my experiences. I create, edit and publish all videos myself with no input from Medtronic or other agencies.

Tuesday, 17 February 2015

Real World People With Diabetes!

Ever since I started to take a little more notice of my D a few years ago the online world has helped me in ways that cannot be quantified. Along with the questionable suggestions to get fixed with cinnamon, have come hundreds of friends around the world giving help, advice and a pick me up whenever needed. In parallel to this virtual support in the last two years has been a fantastic group of local people who I meet every couple of months. Seeing people, shaking hands and offering an arm around the shoulder when needed is a fantastic opportunity. 


Let me reintroduce Lancaster iPumps. Through the guiding hands of Hazel we are a welcoming group of people with diabetes and their associated partners and friends. Although primarily focused on insulin pump users we'll let anyone in who has an interest and a liking for tea, coffee and cake! iPumps is slowly growing and the upcoming meetings are hopefully a chance for even more to come along. We tend to have a guest speaker who comes along and mostly meetings are very informal with discussion led by the group.

The coming meetings are really exciting me so here are the details available as I go to press (just call me Peter Parker!):

March 10th - Our guest speaker is the wonderful Joanne Hall from Medtronic who's coming to give us all their latest updates along with the info behind the new 640G pump system. 


Tying in with this, next week I'm getting the chance to try the system out for a while in real life to give my views and reviews! #exciting! As this coincides perfectly I'll also be on hand to answer the "but does it really work?" questions. Of all the speakers in the coming months I rank myself as not worthy but I'm hoping I can be of some use.  

May 19th - Next on our list is the athletic Gavin Griffiths aka Diathlete!
 


If you've not heard about his 'small' adventures have a look at his Facebook page. As an example of the jogs he likes to take part in, in 2013 he ran 30 miles each day for 30 days and his 2014 US tour saw him take in 7 marathons in a month! We are very fortunate to accommodate him as part of his UK Tour 2015. He's popping in to recall some of his memories on his past travels and offer some fantastic sports advice I'm sure. Maybe he'll bring his 2012 Olympic Torch too?

Another huge event for 2015 is Dr Jen Nash psychologist booked to present 2 seminars for Lancs-i-pumps: 'Well-being and diabetes' & 'Emotional impact of diabetes'. 



We have been funded to put on this event as a joint seminar with health care practitioners. There will be a hot meal included - booking in advance. More info to come on this one but please save this date to be able to support the event. The more we're seen, the more we'll be able to influence local diabetes health care!

All in all it’s a great group and very, very welcoming to new people. Don’t worry it’s not like a confessional where you have to declare your HbA1c. You’re quite welcome to skulk into the back and just listen but the more questions the better. If you’re local(ish) please come along to any of these meetings and if you need help with childcare there is also have some funding available for that so no excuses ☺

See you 10th March at The Gregson Centre, 7:30pm for coffee, cake and chat!
As a tease for my next blog I'll be taking a close look at the Minimed 640G Pump System next week and there's a possibility there might be a bit of video blogging coming up - not entirely sure but we'll see if I can achieve it without breaking the camera!


Monday, 19 January 2015

It's a System Not a Pump. Apparently!

No new blog for months then two in a week! I know, it doesn’t make any logical sense but enjoy it while you can!



On Friday I caught a ridiculously early train to visit Medtronic in Watford as a get-together for some bloggers and other more important people than me.

(I’ll be up-front and tell you they paid for my return train trip and lasagna and profiteroles for lunch. As the return train journey totalled seven and a half hours sitting in a variety of uncomfortable seats to a single destination with no detours I’ll leave it to you to decide whether I was ‘wined and dined’ to a level that might affect my impartiality!)

The purpose of the day from Medtronic’s side was to get feedback from various parts of the diabetes community without outside healthcare professionals to inhibit free speech – not that that is normally enough to make me bite my tongue!

The main subject of the day was their “biggest product launch for ten years”, the imminent arrival of the MiniMed 640G System. There were plenty of facts and as other people made more detailed notes than me, and manage to summarise details in a concise way I struggle with, I’ll point you to them rather than repeating stuff already said.

Go, please do. I won't be offended. But come back!

OK now you’ve read them welcome back and I’ll add bits I picked up.

System? I thought you were going to see a new pump?
I think brainwashed is the term. Just like I know all the words to Let It Go (it wouldn’t be one of my blogs without a Disney hyperlink!) because it’s been repeated so many times in my vicinity; Andy, Mike and the other Medtronic UK people were very well prepared in (nearly) always calling it a system not just a pump. The thinking is that the inbuilt technology is so integrated into their Enlite CGM that they are keen it’s not just a pump upgrade, it’s a new way to approach pump therapy.

Where did the name come from?
OK, I’ll admit it’s not the biggest question for most people but product naming always, worryingly, intrigues me. So here goes:
6 - Sixth variety of MiniMed pump from 1983 onwards.
4 - Fourth CGM algorithm since 1983.
0 - To allow incremental tweaks i.e. next could be 641G.
G – CGM enabled. Why not 640C or 640M? Shrug.
Having said that I like proper names. Veo has the ring of a space-related hero. Hey-ho; numbering it is.

How and when do I get one?
During the last year Medtronic have been testing them around the world and some people (this might be UK-only info) towards the end of last year who began pump therapy on the Veo were given the option to automatically upgrade to the 640G. These auto-upgrades (if eligible you’ll already know) will be started this week. The official worldwide launch begins on Monday 2nd February in four countries only; UK, Australia, Sweden and Denmark. Other countries will then be rolled out but this is subject to local medical approval and hoops to jump through.

Are they replacing existing Veos?
No. A juicy rumour I saw this weekend was that all existing Medtronic Veo users would get an automatic free upgrade. This is not true. Swaps will be down to your usual local pump replacement policy. Your local healthcare provider buying the new system from Medtronic will drive this and supplying you, as happens currently. Sorry.
Initially in the UK they’ll be provided in parallel to the Veo while local commissioning groups get their systems updated but within a short time (about 6 months) all new Medtronic pump supplies will be the 640G system.

Have sensors improved as historically they have a reputation for average performance?
This is an interesting one. The latest version of the Enlite CGM sensor (version 4) was built with this pump in mind. The improved algorithms in the 640G mean that CGM performance of the current Enlite sensor is noticeably improved when used with the Veo/530G.
Personally, as I’ve said previously, I’ve had an OK experience with the Enlite with a reasonable success rate. Others I know have fallen out with it so this improvement ‘might’ tempt them back.

Would I want one if no CGM?
Yes. This is because I’m a bit of a gadget geek and any extra features are always tempting. For me the key (non-CGM related features) are:
  • Waterproof – Splashing about by the pool on holiday with no stress about having to disconnect if popping in and out etc. Official rating of IPX8. This translates as "IPX-8 Protected against water submersion - The equipment is suitable for continual submersion in water under conditions which are identified by the manufacturer (typically 3m)." As a comparison the Libre is IPX7 which is up to 30 mins in up to 1m of water.
  • Battery back-up – The 640G has a built in rechargeable battery than can provide up to 8 hours of use if the replaceable AA (instead of the Veo's AAA) battery runs out. This is pretty cool, as currently my emergency kit bag has to contain a battery as the warning on the Veo can be as small as two hours. Also, a big plus, the type of AA battery used now includes rechargeable for the first time.
  • Set-change alerts – After mistakenly reaching five days on a set recently I love this development. The ability to set an alert automatically to come on at either 2 or 3 days after a set change is one of those features that’s so blooming obvious, yet simple!
  • Bolus from meter - The new Bayer Contour Link XT meter acts as a way to bolus without fishing out the pump from the pocket or dress (at the weekends). The bolus wizard isn't accessible but you can give normal, square or dual-wave boluses. The pump also acts as the USB transmitter for the (soon to be improved) CareLink software for downloading pump data for clinic appointments etc along with the blood glucose readings from the meter.  

Is SmartGuard helpful in real-life use?
We’ve all seen brochures and advertising and taken everything with a big pinch of salt. The promises offered by SmartGuard in reducing the number of hypos and providing a safety mechanism against severe ones sound fantastic. But will it work? For this we have to take the experiences of Sue from Dasang and Helen a person with T1 who also works for Medtronic. I can see the skeptics now saying we can’t trust Helen as she works for ‘them’ so she would say that wouldn’t she? Well, no. I don’t think she would. The official Medtronic peeps said that if Helen or us wanted they’d leave the room they would but no one felt any pressure so we carried on. Helen gave some real-life examples of where the SmartGuard kicked in without her realising and the insulin delivery had already been suspended before she realised there was a possibility she might be going low. The ability to turn the alarms off meant there were times when it stopped then restarted without her knowing at all!
But what about for me? Well this weekend I was doing my usual weekend tasks and junior football stuff and whilst I kept my BGs up by topping up with Fruit Pastilles. The value of something that would have kept me at a slightly higher level without having to stop and test would have been priceless. Yes, the Libre would also have been useful for easy tracking but the idea of the 640G system ‘managing’ me just blows my mind. Temporary basals, again could have been used but for some periods I wasn’t sure how much activity I was doing as it slowly increased until I started so by that stage it was too late.
Once again I’ll admit to being a bit of a techy geek and shiny new things always tempt me but I do believe that, for me, the 640G would be a good replacement for my current Veo. I’ll come back to this though.

I currently extend my life of Enlite (against Medtronic advice). Can I still so this?
A lot of “no comments” and “we do not recommend this” when this idea was suggested. Medtronic could only obviously discuss the 6-day use of the Enlite. If someone found a way to extend it and did so they would need to do this at their own risk. No change there then! 

Will Enlite sensor price be changing on launch of the 640G?
No. Despite other promotions elsewhere, Medtronic UK are not going to be changing the price of the Enlite sensors in the short to medium term. Parallel to this there is running a NICE consultation on the use of Sensor Augmented Pumps. Until this has been completed and published in around October Medtronic will have a limited understanding on potential future volumes and therefore possible mass production volume savings. This is a bit of a disappointment with other subscription promos around the world but this is where we are at the moment.
One slight change is that a MiniLink transmitter and one Enlite sensor will be provided with each 640G system. This removes the initial start-up barrier of the transmitter of £350 for new users.

I’ll admit to being smitten with the 640G system. It’s got a lot of new features that match the competitors’ offerings but I genuinely believe the SmartGuard sets it apart – if the sensor costs are affordable!

Roll on November when I hit 4 years with the Veo and then I wait patiently for Red, my Veo, to break outside its warranty! (Assuming other new technology doesn't cause me even more quandaries!)


Until the next time. Stay safe, enjoy life and try and stop humming LET IT GO!