Friday 24 June 2011

Snort, drink and smoke your way to an early grave.

I always said that I would write this blog honestly and openly and would never just write according to which posts were most popular to keep the clicks coming in. Nothing frustrates me more than reading blogs where all people talk about is the wonderful DOC (Diabetic Online Community) and how diabetes has made them grow as a person (I don't feel diabetes has made me grow as a person. I MADE ME GROW. Oh and biology had a little to do with it also). Anyway, I always said that I would write about both the good times and the bad, even if the bad is embarrassing (went out for the day without filling up my reservoir a few weeks ago - marvellous fun that one),or funny (thought I'd gone blind during a hypo) or sad (because sometimes, it is just bloody hard).

Well, I have decided to admit a deep, dark, sordid secret about a huge risk I take with my health. I do so because this habit of mine is well and truly ingrained in my behaviour and no matter how hard I try or how many times I read about people getting off it, I simply can't seem to shake it. And as a person who writes a blog and who you may well be listening to when I tell you my story, you need to have all the facts. I hope you can understand.

So, back to my admission. Any guesses?





Thankfully, my sordid secret relates none of the above. But it does relate to something which causes my sugars to soare each and every time I do it. I have a track record clearer than the shadows on the video of the moon landing. Clearer than the lack of WMDs in Iraq. And clearer than the paper mache on the Roswell 'alien'. Yet I still choose to engage in this activity in a self-destructive way which makes a mockery of the hard work my mother went through to bring my perfect little self into the world.

What is it?

Well, if I told you you should stay away from anything which is packed with anti-oxidants, what would you say? If I told you anything with natural fruit sugar and natural sources of fibre was off-limits, what would you do? If I told you this came from the earth and many countries base their primary economic income on it, what would you think?

Yep, you guess it. Fruit.

I love nothing more than to sink into a giant pot of fruit. Strawberries, blueberries, pineapple, watermelon, honeydew, gala. I could sink my teeth into a blood orange until the cows come home and enjoy every second unflinchingly.

The thing is, if I wasn't afflicted with a defective pancreas and blood sugars who love a good roller coaster style curve I would probably be considered very healthy. I have never in my adult life struggled to get my 5 a day because I love fruit and veg. But the impact of my reckless lifestyle is that my blood sugars - usually relatively stable - go completely haywire.

Every. Time.

My biggest diabetic frustration (other than the fact it picked me in the first place) is that when I eat any kind of fruit I jump from 7.5 - 13mmol (as I have done today). I could take my pancreas, rip it out and go all Tarantino on its ass. Trying to explain to non-D's that fruit is more damaging to a diabetic than a tub of lard is like telling Victoria Beckham that a sandwich never killed anyone and sometimes even accepting it myself is pretty tough. If I didn't need it, my testing kit could easily have been launched from my 4th floor office window today.

Today when I woke up at 6.30am, I was 7.4mmol (133 mg/dl).

At 7.30 before I ate my omellete. I was 7.8mmol (140 mg/dl)

At 9.45, after my omellete and just before I ate (and bolused for) my bowl of fruit , I was 7.0mmol (126 mg/dl).

Then, at 11.15am and after having thoroughly enjoyed my fruit, I was 13mmol (234 mg/dl).

I have read so many accounts of people who pride themselves on having fantastic sugars and swearing by a low carb diet lacking in any fruit, who claim to be healthier than all those who around them. I am sure that I could have kept up that 7.5 trend until dinner tonight had I not wanted that fruit so badly. But that's just it. I want to eat fruit. If we were talking straight up liquorice, sweets, cane sugar and milkshakes I could understand it.

But it's fruit!

I don't know what the answer to this one is and after 24 years, I doubt I ever will. But being honest about the fact that this diabetic issue both infuriates and baffles me, makes it a whole lot easier to manage.

Anna - off to eat a giant piece of melon and screw you Mr D!

Wednesday 22 June 2011

Improving Access to Medical Technology

It's no secret that I love all things diabetes. Except having it that is which is no fun whatsoever, by the way. Other than having the odd funny hypo story or day when I get all under my blood sugar levels under 10 (which seems to coincide with a full moon, strangely enough), having diabetes is the biggest challenge I will ever face in my life. Fact. It can be worrying, frustrating, angering, tiring and annoying to say the least. And when you really upset the gods, these happen all at once.

But in recent years I have learnt that if I harness the energy I put into diabetes and channel it the right way I seem to meet fantastic people, I get involved in projects of which I am terrifically proud and I achieve things I wouldn't have thought possible.

This week was one such week. Thanks to an invite from Lesley Jordan from INPUT (the UK's largest patient advocacy service), I was invited up to Westminster to take part in (well, attend more than take part , really) one of the new All Party Parliamentary Groups (APPG) on Improving Patient Access to Medical Technology.

So what do these APPGs do? Well, until yesterday I wasn't sure myself. But with such a distinct and provoking title, I wasn't about to miss this one. After all, I make no secret of being very grateful for being one of the 'lucky' people to benefit from an insulin pump, but also that I find it frustrating that so many others out there are not afforded the same treatment. So with a title promising to make for extremely interesting participation, I gladly accepted Lesley's offer.

After jamming all my work for Tuesday into Monday, I boarded my train and headed for London feeling very excited but also admittedly baffled that I had somehow been invited to such an important event. I met with Lesley at Waterloo, where we had a quick Subway lunch (low carb and blood sugar friendly of course) and made our way to Parliament.

To give you a bit of background on the APPGs, they are a parliamentary group which are set up for any number of reasons and to discuss any range of issues: there is one for diabetes, there is one for climate change, one for dementia, breast cancer and even one for beer (with over 300 MPs in membership, I might add!). The list goes on. In order to set one up you need at least 20 MPs who are willing to be members of the group, which can be both a positive and a negative. The positive is that you can get some real weight behind you (see earlier beer group comment!) and get some big names into the group. The negative (pessimism informs me) is that it would be a mighty fine thing to put your name to, without really having to get deeply involved. But either way, the point of these groups is to discuss an issue, any issue, which deserves appropriate attention and to raise its profile in parliament. It allows those who attend to be better educated on current issues and hopefully in future to bring about change.

OK, that's the groups in a nutshell. Now for the specifics. This APPG appeared to have 21 MPs (including my local Lib Dem MP and Portsmouth City Councillor......) and in attendance were a number of key people professors, NHS Commissioners (the ones making and re-making decisions about your NHS), representatives from NICE (National Institute for Health and Clinical Excellence), INPUT and The Chairman of the Medical Technology Group (MTG), Barbara Harpham. And what was the purpose of the group? Well, exactly what it says on the tin: to discuss reasons to improve access to medical technology. This particular meet was focused specifically on Orthopaedics, with fast-paced and fact-packed talks by Professor Peter Kay (no, not the rotund dude who owned the Phoenix Club and toured the country with his mate Paddy), but the President of the British Orthopaedic Association, Professor Tim Briggs (Medical Director of the Royal National Orthopaedic Hospital) and Ros Meek (Director of ARMA, the Arthritis and Muskuloskeletal Alliance).

Now you may think all that sounds great and all, but what does that have to do with Diabetes? Well, a lot it turns out. I arrived thinking this would be an exercise in experiencing what goes on in these kind of parliamentary meetings because frankly, at times we all [quite rightfully] question exactly what our government is doing. But it turns out that Diabetes isn't the only disease whose battles are plagued by NHS red tape and procedural flaws. The talks given highlighted the way in which the NHS is fast becoming an emergency service, rather than a health service and that often treatment is simply not given until people are suffering and complications have developed far beyond those seen at the point of diagnosis.

Sound familiar?

As the meeting progressed, I found myself grunting and nodding along more and more enthusiastically in agreement with the points being raised and if the words 'orthopaedics', 'knees' and 'hips' weren't being used, could easily have mistaken the discussion for one about diabetes. In fact I got so grunty I could even have been mistaken for an MP myself - having become quite used to giving a long "urhurumum" when I heard a point I agreed with. Funny how being in a parliamentary meeting turned me into a little parliamentary sheep.

So, the crux of the matter. Do you get a pump - proven to minimise diabetic complications, improve quality of life and offer much better glucose control - when you are first diagnosed? No, instead we need to be suffering debilitating hypos or have a raised A1c (a sure-fire path to complications). You have to be DAPHNE trained and prepped up to the eyeballs before you are even considered for a pump. In fact, Barabara Harpham summed it up perfectly when she pointed out (even though the discussion was orthopaedics) that in the United States there is a 35% take up of insulin pumps, in Europe the figure is 20% and in the UK, worryingly enough, this figure is just 3.5%. THREE POINT FIVE PERCENT!

The big message I took away from yesterday's meeting was that in fact the battles faced by diabetics are worryingly similar to those faced by every other sector of the NHS. And with the challenges faced at the moment, what new barriers will be introduced in order to cost-cut and penny-save.

It could be easy to walk away from a day like yesterday filled with hope that in the next 5 years every diabetic (even those currently ruled out type 2s) will have access to a pump. But politics is just that, political. It is hard to know who was present yesterday in order to take this issue forward and work towards creating a National Health Service which doesn't just meet basic needs (which we all know on many occasions it doesn't do), but offers services and provides technology which can not only improve the lives of the public, but also save huge amounts (we are talking billions) of pounds long term. As Prof. Tim Briggs kept re-iterating, it is about finding the right treatment for the right patient at the right time.

Yesterday was fascinating and the optimist in me sees such groups as a real opportunity to impress the importance of offering patients appropriate and life-saving medical technologies at the earliest possible stage, rather than how the system currently does it, at the point of no return. But I also have to remember that there were only 30 people in that room yesterday. The job is ours to take this forward and continue to impress on policy-makers the absolute importance of making the most of medical technology.

My biggest question resulting from yesterdays meeting was "What's next?", because I am all too aware that the seemingly passionate involvement of the people there yesterday could go no further than be shelved until the next meeting if we don't keep pressing this issue. But the fact is even if yesterday's meeting only served to educate one or two of the MPs in attendance that medical technology is key in saving money, improving lives (both medically and emotionally) and in creating a National Health System we can be proud of, then it is already an achievement in itself.

But the reassuring thing for me was to see people like Lesley in her absolute element and making a bee-line for the Chair in order to dive in and get straight to the nitty gritty. It was reassuring to see that medical technology - which is ultimately going to be the saving of us - being discussed with such passion, and it was reassuring to see Type 1, which dare I say is often forgotten or overshadowed in the media by Type 2, being given such worthy attention.

To see who else out there is fighting out corner, click here.

Saturday 11 June 2011

Sensor update

I have now been trialling the Medtronic Enlite CGM sensor for around 4 weeks and feel that as my trial draws to a close and the time when Medtronic will have to rip the sensor from my tightly clasped hands draws closer, it might be time to fill you in on my experience.

The people at Medtronic have been openly proud (and rightly so) about the improvements they boast on their new Enlite Sensors. These improvements include a 69% smaller sensor and an automatic inserter which not only allows for much easier insertion, but also hides the needle; a big deal if you're jabbing it into a kid or needle-phobe (I know, needlephobic diabetic- tough break! ). Along with this they claim improved accuracy (98% of hypos detected) and a more comfortable wear in general. Big words, I know.

I have now had a full month of wearing sensors and feel I have experienced enough to give you a decent idea of what a difference there is between this and their primitive version, the Sofsensor. I mean, I could have updated after 2 days, but having been so pleased I was offered this trial in the first place, it wasn't going to be all that unbiased was it?

Let's start from the beginning.

The smaller sensor

Having had a chance to directly compare one of the old sensors with the new, I was already impressed with the smaller sensor before I even attached my first Enlite. The sensor was visibly thinner, shorter and perhaps most importantly if you brushed your finger over the end of it, felt like a hair compared to piece of metal. Unfortunately my old laptop has died a technological death, which means I have also lost the photos of what my stomach looked like when I tried to wear the old sensor for 8 days (which is probably convenient for Medtronic - not the best advert I've ever seen). Other than the immense irritation, apparent under-skin bleeding and lump that I was left with, the truth is the accuracy was so poor that it really didn't seem to be worth it.

Well so far this time around although I have unfortunately not been able to get more than 7 days out of a sensor (although some friends also taking part in the trial managed 12), the comfort is not what has stopped me carrying on. In fact, after a full 7 days there was no point at which I felt irritated, sore or even particularly aware that I was wearing the sensor. Compared to the generous 3 days I managed without irritation last time, this difference was huge. I can also advise that the friend who did make it to 12 days told me that she removed it due to waining accuracy, not due to irritation. Not bad for a product with a guide of 6 days, ay.

So it's all round thumbs up on the smaller sensor.

Automatic Insertion

This one is another big thumbs up for me. I don't think I felt particularly repulsed by the other inserter Medtronic had in place, but having said that I also wasn't aware of how much I disliked injecting until my first week on the pump had passed and I realised that ever injecting again appealed about as much as a roll in the hay with Noel Edmunds. The fact is the new device (below) means no more faffing about removing tabs and flaps and worrying that if you unflap the wrong tab before you untab the right flap, you will have lost the sensor all together. With the new inserter you don't even have to touch the sensor until you are removing the needle after it is already in. It has even been designed so that you can remove the sensore from the box and straight into the inserter, without even touching it. The casing is also recyclable, for those trying to ease the load on our plastic planet. Jamie and I now have sensor change day down to a fine art and thanks to the improved adhesion to the skin (by ensuring the sensor is fixed flat to the skin rather than 'flapping about') the wearability factor has gone up ten fold.

The sexy new sensor

The tip of the scary-ass old inserter, spearhead and all!

We like. We like it a lot.

Improved Accuracy

Due to the sometimes wild readings of the old Sofsensor system, I never really worked out how the sensor managed to detect hypos other than by recognising that your blood glucose levels (BGs) were going up or down, which in itself does not necessarily mean a hypo will happen. You could go from 9 down to 6 which is ideal. A hypo alert now would seem premature. So I have been pretty baffled by the new enlite sensors which have at times alarmed when I was seemingly stable or nudging down very slightly. But far for me to be the one to pick it apart, it has been right almost every time. It certainly allowed me to make slight adjustments like snack on a handful of fruit here and there and manage to bump the sugars up. In fact, having had an appointment with my Consultant last week, he has said that he will support my application for CGM funding, because in just 4 weeks my average blood glucose has gone from 8.5mmol (which equates to an HbA1c of around 7%, apparently) down to 7.4mmol. That difference is just within the last 4 weeks, and I am not sure that would have been possible if the accuracy on the Enlite was not so great.

That being said, I am not here to just 'sell sell sell' for Medtronic and I did have one sensor which gave me some strange readings. However, I can recognise that having had a massive hypo 5 minutes before needing to calibrate the sensor for the first time, and then ending up having a series of badly timed follow up calibrations which collided with several meals/hypos, my transmitter was probably extremely pleased when I in fact took the sensor off 3 days early. The thing about CGM is that when it works well, it is possibly the MOST useful diabetes tool we have at our disposal. When it doesn't work, it is also the single most useless tool. I had several times this week when I was told I was 19.1mmol and going up (in fact I was 13mmol), and one incident where it said I was 6.9mmol and rising quickly alarming that a a high was imminent and when I tested I was 3.4mmol and apparently dropping. I did try turning it all off and on again but that seemed to have no effect. So I turned it off. It is most likely that my poor calibrations and frequent hypos were the issue, but I should still tell you so that you can have the full picture.

All round comfort and experience
Well, I have to say that as for all round comfort and experience, things have moved on hugely since the times of the unpredictable and extremely uncomfortable Sofsensor. I may have to go into hiding so that I can eek out just a few precious more moments with my transmitter before Medtronic cruelly and coldly take it back from me, like ripping candy from a diabetic adult. OK OK, so it's only because they were nice enough to give me this trial in the first place that I have had an opportunity to try it, but either way the message is strong: The Enlite Sensors have landed and they mean business.

If you have an opportunity to try one or are one of the people already benefiting (but only slightly) from the Sofsensor CGM system, I really would recommend getting a handful of the Enlite sensors. You won't be disappointed.

Medtronic's claims are not just a selling ploy, they are grounded. Of all the people trying the sensor in this trial, I have yet to find out who has not been impressed. Strong words for a bunch of talk-a-write-a-holics who love nothing more than to pick apart the system.

Anna - heading in the direction of Rio with a backpack full of food and transmitter still attached!

Friday 3 June 2011

Saying Goodbye to Elizabeth

There are over 6 billion people in this world and with each one comes a story, a journey and a life. Every day people arrive on this planet - and leave it- just as they have done for millions of years and will continue to until this world is no more. In fact each day around 150,000 people pass away and chances are most of the time you didn't know any of them. You don't even know it has happened. You wouldn't necessarily feel sad yourself if you found out someone you didn't know had died, but you may take a moment to recognise the sadness this brings to others and you empathise with them.

Today on Facebook I read a status update of a fellow diabetic, taking a moment to remember a 29 year old diabetic named Elizabeth, who recently passed away.

I didn't know Elizabeth, or pretend to. I don't know her parents or friends. I don't know if she had a job, pets or hobbies. Perhaps she had a fantastic sense of humour. Maybe she loved to read and spend time on her own. Maybe she was a film buff. Whatever her story, it makes me sad that another diabetic who is exactly my age, has lost her life to diabetes.

But it makes me proud that on Facebook tonight, there are little blue candles appearing on every ones page. The candle of remembrance. It makes me proud that in the community we belong to, people care when we lose one of our own, even if we didn't know them.

The DOC (Diabetic Online Community) spans the world and it doesn't matter that we may not have known Elizabeth together because tonight, will remember her together.

And say goodbye to her together.

Thursday 2 June 2011

Walking into door frames

It is no secret that I have been in the Medtronic 'fan club' for some time and I make no apologies about the praise I give them for their customer service. On countless occasions their customer service team have pulled me out of a tight spot following a bout of bumbling clumsiness. I include in that the time I accidentally hung up from someone on the Medtronic team thanks to the fog of hyperglycaemic sugars I was wading through only to find out they had spent around 30 minutes trying to get back through to me. I learnt recently that this is policy, because the patient on the other end of the phone could have collapsed. It's kind of fuzzy and cuddly to know that, isn't it?

I should add here that I only have one other company to compare them to and make no assumptions about the likes of other big players in the market such as Animas and Accu Chek. Unfortunately my brief encounter with Omnipod left a lot to be desired which has probably nudged me an few steps closer to camp Medtronic. I was among the many thousands of pump users in the country just falling over myself to get to the Omnipod - the worlds first tubing free insulin pump - which landed on our shores in the summer of 2010. However, after 6 months of unanswered emails and forgotten voicemail messages, my correspondence clearly got forwarded to someone much higher up (and overseas, I might add) who couldn't have gone to more effort to get a demo pod to my doorstep. It was just a little too late at that time. I am hoping that the issues I had were a one off and that other people out there have not only had the chance to try it, but that if or when they had an issue it didn't take 6 months to shoe-horn a response out them!

So all being said and done, it's pretty clear that Medtonic have brain-washed me into rubbing their Big Pharma egos and writing about how marvellous they are. The fact is, I would LOVE to bring you a story about how they let me down or dropped the ball, but just recently they not only impressed me with their super-speedy nothing too big an issue attitude, but actually left me speechless. I know. That must be just as newsworthy as the time Victoria Beckham ate a burger and the time Katie 'Jordan' Price said something intelligent (that's' un-thick, if you're reading this, Katie).

The story goes that while at the Medtronic Office in Watford recently, my local Med-rep Polly Haycocks spotted that I had a crack in Maggie (my pump). Feeling a little sheepish about the fact I probably acquired said crack by either dropping it/dragging it like a dog lead after forgetting it was attached to me/walking into door frame/falling out of car/catching it on door handle and any or all of the above, I thought it was being pointed out that I had damaged their precious product. In fact, the revelation that I had a crack in my pump appeared to light some kind of small fire underneath Product Support and Customer Service Manager Pat Moore, who like a whirling dervish set about ordering me a new one. Now if you've ever ordered anything online you will know that if you are lucky enough to have something in stock, you probably need to wait about another 5-7 working days before your product arrives. Well after no more than a few questions about what colour I would like and was anyone at home today, my new pump was on its way to me. Impressive enough statement on its own, but as it turns out my brand sparkly new pump actually reached me in under 2 hours!

Now I have no doubt that it helped somewhat that I happened to be at the Medtronic Headquarters office at the time and that I happened to be meeting the Products Support and Customer Service Manager, but still - under 2 hours to swap out my old pump, which was literally whipped out of my hands and replaced. No forms, hassle, interview or Spanish Inquisition to get to the root of the damage!

So it is with great pleasure that introduce you to my new pump - Lord Pumpington (in electric blue no less!)

Once again I have to take my imaginary hat off to Medtronic and hold my hands up - they have once again jumped a foot high when I ask for an inch!