Advocates, will you please stand up.

Do you want to know more about pumps but don't know where to start?
Are you a keen diabetes advocate and want an opportunity to stand up and be counted?

Want to talk about the burning issues in diabetes care today?

In 2012 the UK's only charity for increasing access to medical technology for diabetes, INPUT, decided to put itself 'out there' and take their knowledge on pumps and medical technology - and how to gain access to them in the UK - to the areas of the country with the lowest uptakes. In doing so, they reached out to the hoards of people either desperate for a pump and not able to get one, or interested but unsure of where to start, or what questions to ask.  

On 5th October this year between 11am and 3pm, they will be hosting their Cornwall Roadshow at the Alverton Hotel, Truro.  Here, the usual leaders in the market providing pump technology will be there to pose your questions to, to chat to about yours or your loved one's hopes and expectations from a pump and offer you the chance to see them first hand. 

This year however, INPUT have added even more to get involved in and excited about.  Following the usual superb roadshow event on Saturday 5th October, Professor John Pickup who is a leading Professor of Diabetes and Metabolism at Kings College London, will be around for a Q&A session about all things diabetes.  Professor Pickup has quite literally led the way in diabetes research, treatments and technologies, is an expert advisor to the National Institute of Clinical Excellence and has received countless prestigious awards for his contribution to the field of diabetes.  NICE.

But if somehow even that wasn't enough for you to get excited about (frankly, you had me at 'Professor Pickup'), then on the Sunday morning (6th October), the INPUT team will be hosting a patient forum 'open mic' session where bloggers and advocates are invited to get involved and get talking.  About anything; about everything.  

So if you have something you want to get talking about; an idea burning its way through your mind; a challenge you think you could help sort out; a vision you want to share, or just a conversation you want to start, then this is your chance.  

Get in touch with INPUT for more information on this event.

The INPUT team look forward to seeing you there! 

Sexy stuff

Sex: it can be a tricky subject to talk about on a public blog, no?

My husband Jamie has been in my life for 11 years now, six of which we have spent together as a couple.  When we first began dating and started to navigate life together, Jamie had to earn his degree at the University of Diabetes, as all loved ones and carers of people with diabetes do at some point.  

As we talked about different treatments and how I manage it, my views on insulin pumps were clear; it was not for me. Medical terms like 'cannula' and 'infusion set' weren't welcome in my lexicon, and for many years I simply wanted to know nothing about them.

But as I learned more about the many benefits of pumping and realised that the problems people usually go on a pump to address were the very same challenges I was facing after more than 20 years with D, I realised I may need to re-consider my options longer term.

 

Jamie's never been squeamish.  He watches Embarrassing Bodies with the same morbid fascination many do.  But nevertheless, diabetes can be a gorey condition and having the gore on your own doorstep is different to watching it on a television show. Needles and annual blood tests are one thing, cannulas, possible glucagon administration and well-documented complications are another.

As I approached the decision to go on a pump I had to make sure that having tubing protruding from my clothing and cannulas moving around the landscape of my body wouldn't be a problem.  I had to make it clear that if it was, then I would come off the pump.  Above all else, Jamie still had to find me attractive if our relationship was to continue as well as it had so far.  Feeling squeamish at the sight of me was not an option.

As always Jamie's attitude was to take it all in his stride.  I believe his exact words were, "Do I mind it, are you kidding?  It's like a girlfriend remote; notch it up a couple of units when you're annoying me, wait for you to go floppy, give you time to think about what you've done then chuck you some sweets.  It's what every guy could want."  True love there people, true love.

Rather on topic, Kerri Sparling of Six Until Me recently posted about how insulin pumps work during sex, and how you can either keep it on, or fling it.  Personally, I'm a flinger; I don't want to be worrying about Lord Pumpington while in the throes of passion.  It's Jamie and Anna time - no third parties needed (just don't tell Jamie, that will kill many a dream that was never going to come true). 

My pump didn't change the way my then boyfriend (now husband) looked at me;  It didn't freak him out; it doesn't get in the way of a sex life; it needn't be something you worry about if you are thinking about life on a pump.  In fact, getting one may just make you a happier, healthier, more fun-loving person.  

And who wouldn't wanna tap that ;)

 

Dexcom G4 vs. Medtronic Enlite: The Low Down

There are many tools in my diabetes arsenal which help me smash diabetes out of the park and continue living my life the way I want.  But there are two above all others to which I credit my current success: Continuous Glucose Monitoring (CGM) and my insulin pump, Lord Pumpington.

CGM has been around now for around a decade and gives us the tools to monitor glucose levels within the tissue beneath the skin, feeding back results around every five minutes with a lag time of between five and 15 minutes.  When I was first diagnosed in 1986, we had to pee on sticks to find out what our bloods were doing four hours ago (useful, maybe, as long as you don't have diabetes mind....).

If you are considering Continuous Glucose Monitoring, you probably have one major question rolling around your brain: which system is best for me?  There are two available in the UK; the Medtronic Enlite and the Dexcom G4.  I had the opportunity to try both systems and know that when deciding, it wasn't the gumph (actual term) spouted by the pharma companies but the experiences of others with T1D which led me to my final decision. So here it is, my breakdown of the major differences/benefits of both systems.

Insertion

For this one, Medtronic win hands down.  The Enlites benefit from an automatic inserter in which the sensor sits and from which it is discharged into the skin at the touch of the button.  This means you don't even need to see the needle, let alone insert or retrieve it.  

Comfort

This one is firmly in camp Dexcom.  When you insert your first sensor and have it camped out on your abdominal landscape you will think of nothing else, for a while.  Eventually however, the sensor will become as much a part of you as the watch on your wrist: you know it's there but it comfortably fits in your life, serving a purpose and earning its place on your person.  When I tried the Enlites even after five weeks and having grown used to having CGM in my life, the sensor adhesion felt 'fragile' on me - as though one good knock would see the sensor come away and £50 down the drain.  The Dexcom however feels 'bomb-proof'.  I have bashed it on walls,  scratched at it, got it caught on clothes and been through many a vigorous gym workout.  Nada. That bad boy stays put

Cost

This is the real nitty gritty and, if we're honest, a major factor if you are thinking of bringing CGM into your life.  It is a long term tool, meaning long term costs.  The options for buying include either purchasing a separate handheld unit (if you don't have a pump which can integrate CGM), or buying the kit which integrates into a pump.  I've included the actual costs on the chart below but again, the Dexcom G4 is the industry's worst-kept secret for lasting far longer than the manufacturer's recommendations, making it the much more affordable system

Insulin Pump integration

Both Dexcom and Enlite can be integrated into pumps so this one would be an even keel.  This means the results are sent wirelessly to the pump screen and are 'with you' at all times.

The Dexcom G4 can be integrated into the Animas Vibe insulin pump and the Medtronic Enlites can be integrated with the Medtronic Paradigm Veo.

The Vibe is a waterproof insulin pump which may be worth considering if you are an active water-baby.

The Paradigm Veo on the other-hand has a feature called 'low-glucose suspend', meaning if glucose levels reach a certain low-point, the pump will suspend until glucose levels rise.  Useful if you have kids or severe night-time hypoglycaemia unawareness.

For that reason, there is no winner here, just different selling point.

Low Glucose Suspend

This is perhaps the greatest feature of the Veo and certainly a consideration between the two systems.  I don't suffer severe hypos; but many do.  The Medtronic Enlite system is the only system currently on the market which has the capability to suspend the pump temporarily (up to 2 hours unless someone interacts with the pump, in which case in turns back on immediately) for the purpose of stopping a hypo from progressing further.  This means the Medtronic is the clear winner in this category

Length of wear

One of the biggest factors in making my final decision on which system I should chose was based on the diabetes community's worst-kept secret; that the Dexcom can be 'tricked' into working for far longer than the seven days it has CE approval for.  I'd heard rumours that people could get up to three weeks or so out of the new fourth generation sensors.  And it has most certainly lived up to expectations.  My shortest sensor lasted eight days; My longest, an impressive 36!  Other than that, each sensor I have used has lasted between 14 and 36 days, with the last four alone going between 22 and 36 days. I've heard of one person getting 12 days out of an Enlite sensor but personally after five weeks trial, I never managed more than 8 days.  Meaning the cost really was £50 per week.  Dexcom wins.

Overall Experience

There is a reason I wear a Dexcom, and not a Medtronic Enlite.  There are numerous reasons, in fact.  Even though I use a Paradigm Veo insulin pump (for now) and could have integrated the CGM much cheaper than by forking out for the stand alone kit, it was the accuracy, length of wear, comfort and overall experience of the Dexcom that made it the system I chose.  Everything the Enlites lacked for me, the Dexcom could offer. While there may be considerations such as the false high readings from paracetamol (personally I just switched to Ibuprofen.  Problem solved), the benefits of CGM - and more specifically, the Dexcom G4/Animas Vibe insulin pump system - mean it was a clear choice for me after having tried them both.  

And the benefits CGM has brought to my life are 100-fold:  No more overnight testing, fewer night -time hypos and continuous results driving my decisions, making working, driving, exercising and living my life, easier.  The improvements in my glucose readings are even so marked that I'm even looking forward to my next HbA1c, confident that it will be my best yet.  And for anyone's who been reading this blog a while you will know those are big words, coming from me.

Here it is, the run-down I hope you find useful:

	Dexcom G4	Medtronic Enlite
Cost	£46.50 per sensor £450 starter kit (for integrated pump.  Four sensors included) £975 for stand alone unit (for those without integration feature on pump)	£52 per sensor £750 for starter kit (for integrated pump.  10 Sensors included) Unknown cost for stand alone unit.
Calibrations needed	2 per day although more results can be entered	2 per day.  No more than 4.
Length of wear (according to manufacturer’s guidance)	7 days (CE approved)	6 days (CE approved)
Actual wear by customer’s choice (not advised)	Personal experience of between eight and 36 days wear before sensors expired	Personal experience of only 8 days before sensors expired
Comfort	Extremely comfortable.  Longest time worn for 36 days ith no irritation and very small entry hole. Extremely secure when in place	Comfortable. Longest worn for 8 days, but aware of the sensor site at this time and reasonably irritated on removal. Not as secure feeling when in place
Integrated into pump	Yes, only with Animas Vibe	Yes, only with Medtronic Paradigm Veo
Low Glucose suspend (safety feature to suspend pump temporarily when hypo)	No	Yes, when integrated with Paradigm Veo pump
Alarms	Very good.  Audible, simple, easy to amend upper and lower limits	Good but less audible when pump under covers.  Somewhat over sensitive (alarms when changing very slightly).
Paracetamol use while wearing sensor?	No. It interacts with the fluid giving a false high	Yes.  No issue with fluid interaction.
Range	20 ft, can work between rooms (with stand alone unit)	6 ft (with standalone unit)
Accuracy (MARD score – the gold standard of glucose testing. The lower the MARD, the more accurate the device is considered)	14%	15.3%

You helped me...Thank you...

My diabetes clinic are great.  I've been with them since I first came back to the UK and they have changed over time with me, as well as in front of me - safely leading my way into pumping and Continuous Glucose Monitoring.  Forward-thinking and personal, they know me.  And I know them.

My calls to them are often frantic and hurried, as I search for pump supplies after forgetting to call them yet again.

"That's OK Anna, pop in on Monday and someone from the pump clinic will be here to help."

Today, as I waited briefly at the counter for my Dietician and pump clinic expert, I spotted a familiar face. Let's call her 'Sarah', in case she doesn't want to be plastered all over a blog.  

'Sarah', was my diabetes nurse when I was 15 years old.  She had the responsibility of managing my clinic contact me during the 'dark years'.  Many of you teenagers with T1D, or parents of Children with Diabetes, will know what I mean; when you aren't sure if your teenager is taking insulin, whether or not they are smoking, whether they listen when you tell them you care, whether there is light at the end of the tunnel. Maybe you're reading this thinking, 'I'm still there'. Well, Sarah was the one who had to see me in clinic during those times.

Sarah was one of those people with a gentle, patient way about her.  When I came to clinic, she didn't question me on the BGs over 20mmol (360mg/dl)  I was trying to forget.  She didn't berate me for the three hypos I had last night.  She would just ask, 'how I was'. We talked about what I had done well.  We talked about carbs, diets and how best to inject.  I didn't want to be there, but if I had to be, Sarah seemed OK to talk to. I could manage this.

I still remember our meetings. I remember never really wanting to be there, because we were talking something I found impossibly difficult to accept.  Why me?  Why now? Why should I care? As it turned out, I didn't truly accept it until I was well into my twenties and wanting to go to University.  Even though that University was local, I wanted to feel well enough to go, to enjoy it, to succeed.  

Seeing Sarah today as she welcomed me with a hug and a 'how are you?', and finding out that she was back in clinic again after having worked elsewhere for 10 years, reminded me how lucky I had been that I had a team who didn't try to scare or shout me into self care.  I've blogged in the past about the need to feel hope at the end of the tunnel, rather than fear.  Sarah was one of those people who never tried to use graphic images or frightening story morals to scare me into care.  Fear doesn't work. Period.

I'm lucky that I have a team who listen to my trials and triumphs and try to steer me from stupid decisions (of which there are many) while still allowing me the freedom to see if my latest bright idea in diabetes management might work.  I'm lucky that Sarah was one of the people who laid the ground rules for me.  She allowed me to come to clinic and not be harassed, but welcomed.  Sarah helped lay the seeds in my head that clinic was a safe place.

Now, I engage with my team regularly and I fund my own CGM because I finally 'get' how important this is. I willingly wear a pump because of the freedom it affords me and I know that I've been blessed not to come across any complications to this point.  

Sarah, was one of the people that helped me get there.  Patiently, quietly and without expecting thanks. Thank you.

T1 Pizza night. Omnomnom.

I was lucky enough growing up to come from a family where every direction I turned there was a pillar of strength to help me cope with diabetes.  It wasn't until I turned nine that I met someone else my age with Type 1 who would truly 'get it'. But seeing as he was a boy it was unthinkable that we could be friends.  At nine years old, all boys are gross.  Everyone knows that.

Now in my 26th year with D and through the wonders of the internet, I finally have an abundance of ways to find others with type 1 to put the world to rights with.  And man, I did not realise what I was missing.

In June this year my friend Michelle - part of the Animas Sports Weekend massive - decided to arrange a T1 night out in London.  Boys were on the guest list too, but this one turned into a girly one as the boys wussed out and left the socialising to the pros.  Seven of us hit Clapham Junction Pizza Hut (yes, you heard right, people with diabetes eating pizza) for a night of carbs, wine, laughs and letting down of the hair.

As usually happens when a group of people with Type 1 meet, it takes only minutes before we're laughing, joking, sharing and becoming friends.  From all walks of life, perhaps we may never have had the opportunity to meet if we hadn't been hit with the diabetes stick at some point in our lives.  Now, we would enjoy sharing stores, comparing diabolical blood sugars (somehow the only two with CGM managed the worst BGs, ), ordering carbs with extra carbs on the side, and learning from each other about new ways we might manage the beast.  And that was just the D-talk.

Three hours later and after a whole bunch of wine (the correct measure of wine by law) I boarded my train with a distinct 'wobble' in my step, thinking about the evening we'd shared.  We can file it under 'A good night was had by all'.

Fancy coming along next time? Then join us October 12th, Clapham Junction Pizza Hut at 7pm.  Bring insulin.  Just mention you are coming so we can order a table big enough and have them order in enough pizza dough and wine.

See you there!