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.

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!

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.

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!

The Cure

How old were you the first time you found out that diabetes would be cured?

I have been diabetic for almost 25 years and having been diagnosed at the tiny age of just 4 years old, I don't fully remember when my family - who were shaken to the very core by the diagnosis - were first told about it. What I do remember is confidently telling people that diabetes was going to be cured in the next 5 years. I was 12 at the time. I am now 28. Many things have changed in my life since then and with both the benefit and burden of wisdom, there also came a point where I had to accept that ten years had passed since my cocky assertions as a 12 year old and diabetes still hadn't been cured. Maybe it never would. It was at the age of about 22 that it really began to sink in that this cure may be nothing more than a pipe dream and that the cure' that I had spouted about so self-assuredly at the age of 12, may not come in my life time. If ever.

Like many other people with the condition, I have always been aware that there is a great deal of research going on 'out there' all the time. We don't always know where, when and what about, but we know they exist. We hear talk about these projects in the newsletters we receive, the charity fundraising letters we open asking us for money and on the websites we scan. But it can feel as though we rarely see their outcomes - even if the evidence is right there in front of us, in the form of an insulin pump, slow acting insulin or blood glucose meters.

So when I recently signed up to a Diabetes Wellness Day and found out that one of the speakers was the recipient of a Pancreatic Islet Cell Transplant procedure and she was coming along to tell her story, the 12 year old inside of me started to surface, albeit cautiously and with a hint of scepticism. Last time I heard this research was going on but still not effective enough to warrant the cost, and that most people went back onto insulin with unstable sugars within months - if not weeks -of the procedure. This must mean there is good news on the horizon.

Pancreatic Islet Cell Transplantation is the process of removing healthy cells (known as the Islets of Langerhans believe it or not!) from a donor and implanting them into the liver of diabetic patients. These cells will then begin to produce insulin according to the needs of the donor. For many years this has been and still is, one of the most promising avenues being traversed in search of a cure. But this conference was the first time I had had the opportunity to meet anyone who had actually been through it and could talk about it.

I don't want to ramble on for too much longer, but to give you an idea of where Rae came from, I need to tell you a bit about her first. Rae was diagnosed with Type 1 diabetes at the age of 35, frustratingly close to the upper limit of when a person can be diagnosed with the disease. She was a healthy, fit woman with a high-powered job and fast-paced life. She had to adjust to the disease just as we have all had to, but being someone who already ate well and as a keen runner who exercised regulalry, she had a bit of a head start in incorporating some of the aspects which all diabetics need to be aware of, and the first 10 years after diagnosis passed without great incident.

But after around 10 years, Rae began to show signs of severe diabetic complications, including Retinopahty (death of the blood vessels in the eyes), Gastroparesis (spasming of the stomach causing extended periods of sickness) which in Rae's case led to numerous hospitalisations, a worryingly close call with a foot ulcer which narrowly avoided becoming an amputation and severe hypo unawareness leading to multiple and increasing episodes of hospitalisation. Rae eventually lost her driving license (which I am glad to say she got back!) and had to leave her job.

After the complications continued to worsen and the hospitalisations became more frequent, Rae was eventually told she would be a suitable candidate for a pancreatic islet transplant therapy trial taking place at Churchill Hospital in Oxford. Rae had to go through a rigorous selection procedure and had to wait a long time for the eventual donor to be found. Despite almost getting the procedure and missing out at last minute. Rae remained on the waiting list and eventually was called in for her first transplant. In total Rae had two transplant operations a few months apart.

I don't want to write too much more here because I think it is really important that you hear as much of the story from Rae as possible. But when I met Rae in March, she was insulin free and had been for several months. Her blood sugars were "better than her Doctors" in his own words, and she had suffered no hypos or hypers since the completion of her second transplant.

Rae's story has stayed with me in vivid detail since I met her and I can assure you by the end of the talk there was not a dry eye in the house, in part I believe down to the sheer appreciation and thanks you could see spilling out of Rae herself.

Here are the answers to the questions you put to Rae:

How old are you?
I am 60 years old but was 59 when I had both transplants. I was diagnosed at the age of 35 with Type 1 diabetes and have had it for 25 years.

What do they look for in a suitable candidate for Islet Cell Transplant Therapy?18-65

Had Type 1 diabetes for over 5 years

Weight within height Ratio

Not a smoker

Not a heavy drinker

Not pregnant or planning to become pregnant

Not to have been diagnosed with a serious illness such as cancer or heart disease

To be suffering from severe recurrent hypo's - requiring outside help - for at least 6 months

Development of diabetic complications e.g. retinopathy, neuropathy, gastroparesis etc

To be referred by the patient's own diabetic Consultant, who needs to complete an official referral to the Islet Cell Team at Oxford

These criteria however only form the start of the process. Following this the team decide if a potential patient is invited to Oxford to discuss the possibility of a transplant. This is only done following the receipt of extensive questionnaires and BG (blood glucose) readings and can take several months. Interviews and detailed investigations are then carried out before deciding if the potential patient is then to be placed on the waiting list.

Do you have any idea how many people are undergoing these kind of procedures?

It is quite difficult for me to answer this question with any degree of reliability. However I understand that the numbers are still quite low. I think Oxford had done approximately 20+ procedures however some recipients such as myself have undergone 2 transplants and some will need three. I am unsure if they go on number of patients or total procedures. Also Oxford through the isolation facility provide islet cells to other regional hospitals so nationwide the figure is likely to be higher. Also not all the cells are used for transplants. The website gives further information on how these cells are used.

Do you have to take any medication at all?

The answer to this is yes and is key to the maintenance of the transplant. Immediately after the transplant a dose of CAMPATH is injected into the vein. Following transplant, two main immune-suppression drugs are taken every day. In addition an anti-viral and antibiotics are prescribed for several months after the transplant. In addition any drugs taken prior to the transplant are resumed.

How do you cope with the immune-suppressants and did you have any side effects?

I did experience some side effects following the transplant, but am not sure if these were due to the procedure or the drugs. This was related to having Gastroparesis for 5 days following the transplant, and had a debilitating effect on my recovery. In addition five weeks after the first procedure I developed a chronic ear infection which required hospitalisation. However probably not related to the drugs. Additionally I did experience Diaorrhea for some time after this procedure also this was resolved.

The second side effect last several weeks following both procedures was a low white blood cell count and resulted in temporary suspension of one of my immune suppressant drugs. I am very organised in taking my medication as it is important that it is taken at strict times/doses.

Was the immune suppressants better than having diabetes?

From my perspective it seems a small price to pay for my current experience of being off insulin. However I do naturally have some concerns about the long term effects of taking these. I understand that current research has a focus on transplants in the future and could mean that these do not have to be taken and is the reason why this procedure is currently not available for children.

How did you find the donor?

This is something that as a recipient you have no control over. I understand that the current criteria takes cells from people 30 years old and under.The blood group/tissue type have to be complatible and time on the waiting list are also taken into account. However you must be available to travel to the Transplant Centre within a reasonable time. There have to be a minimum amount of harvested cells in order for the transplant to take place.

Following the transplant you are given the opportunity to write to the donor's family anonymously, and this is coordinated through the transplant coordinator. I found this very emotive but was pleased the opportunity existed to extend my appreciation.

Was it strange not taking injections? How did you feel about eating your first meal without having to inject?

I was on a Medtronic insulin pump for around 10 months prior to the transplant and did not come off it until Christmas 2010. However my doses after the second procedure was so small that I was advised to cease taking insulin. It took me ages to adjust to the habit of setting basal/bolus doses. Initially I felt not being wired to the pump really strange, especially the tasks associated with using a pump such as replacing catheters etc. The overwhelming feeling I got about not injecting before eating was really weird. Like I was forgetting to do something!!

Was it worth it?

A resounding 'Yes' to this question, however I feel appreciative of the opportunity to be a recipient. I can't help feeling emotional when I think of all the people who made this possible. All the fundraisers. The curiosity, commitment and passion of all those involved in the research, particularly the brilliant team at Churchill Hospital, Oxford led by Professor Paul Johnson. Locally my consultant Philip Coates. Of course my Donor and the generosity of their family for giving their permission for organ donation.

My own friends, family and colleagues all played major roles in supporting me through this process.

I understand however that guarantees do not, and cannot, exist regarding how long this will last and the implications for the future. It requires long term commitment to attend regular appointments and to protect and take responsibility for my own health.

However I clearly feel that most diabetics are already well-practised in being disciplined!

I hope you found this interesting and if you ever have the opportunity to hear a transplant recipient speak I would urge you to go. Rae's story truly inspired me and to be alive in the time when this is being done is truly humbling.

But it is also still important to remain realistic. These trials are still at the very early stages and remaining healthy and dedicated now will ensure that WHEN (not if) this procedure is ready for the masses, you will still have a healthy body with which to join in.

We also have to remember that the efficacy of the procedures is not yet known. We have all heard the stories about people being back on insulin after two years. It is too early to think that by next summer all of us post-diabetics will be cured for good if we get the opportunity to do this. There is still a lot to do and a lot to learn. Don't go bulk buying the maple syrup just yet!

But for people with diabetes, their parents and loved ones, this is a step forward which signals a brighter, better and healthier future for diabetics. While there is part of me that is sad that I am not someone who would be considered for a trial and while I am sure my friends and family would rejoice if I was ever put forward, I am confident in the knowledge that people like Rae are leading the way for the rest of us. It is only with the help of willing participants that these trials and the precious results they provide, that people like you and me, your child, your mother and your friend, have a twinkle of hope on the horizon.

Please share this post with your friends, family and especially with all those in 'Club D'.

People need to hear this

Second time lucky - re-visiting CGM

It is no secret that I wasn't the biggest fan of CGM (Continuous Glucose Monitoring) when I first gave it a try. Don't get me wrong - the theory behind CGM is brilliant - pure genius in fact. And I hope that the person or team of people who came up with it are now being fed fresh fruit and fanned with a giant feather Cleopatra style on a beach somewhere, having retired at the age of 32. The idea, is great. But unfortunately when I tried one (the Medtronic Real-Time system) it left a fair deal to be desired. While the idea of information itself is invaluable if correct, there are several boxes CGM needs to tick in order for it to match up to the gold dust label it has acquired over the years.

For me, if I am to find a way to pay for CGM, there a 4 simple things it needs to be:

• 
  
  Reliable


• 
  
  Affordable


• 
  
  Comfortable


• 
  
  Easy

When I last tried CGM using Medtronic's Sofsensor, I found that the accuracy of the blood vs sensor readings were so wildly different that I reached new levels of blood testing madness, because I simply didn't know who or what to trust. I think on the first day I clocked up something ridiculous like 25 blood tests. If the sensor was to be believed, I was going from the brink of coma to surfing the teens several times a day. Even at best it was usually always 3mmol or so out. I also found that it got so 'confused' during periods of hypos, that I would end up turning the alarms off and letting it just get on with its melt down quietly. In fact CGM should always be used to look at trends instead of precise readings, but I experienced several episodes of moving in different directions entirely. Not particularly re-assuring for something desinged only to re-assure!

I also found that contrary to what people had claimed about wearing it for up to 21 days (!), after 6 days I would have paid Medtronic to take it back. I wanted to wear them longer because this would reduce the cost drastically. In fact I am fairly confident you could support a mild smack habit over affording CGM, if you only wear each sensor for 6 days. I wanted to wear it longer, but truth be told could have ripped it out sensor first given half the chance, because it caused so much irritation and discomfort. On top of all that the sensor left me with such sore, red and irritated blotches that it would have taken some serious work to convince people I wasn't harbouring some sort of infections disease - just what you want in bikini season!

So when Medtronic invited me to try out their new system after releasing the new 'Enlite' sensor and making some pretty big claims about the improvements, including a 69% smaller sensor, 98% of hypos detected (out-doing market leader Dexcom 7+) and being much more comfortable, I was rather excited at the prospect of giving it a go. So this weekend I was invited up to the Medtronic office in Watford (like going back to the Mother ship for some strange slightly star-struck reason) to get fitted with one of these 'magical' new sensors.

Well so far I have to say I am pretty impressed. Insertion (with the new automatic inserter) was easier and quicker than with the somewhat clumsy and fiddly predecessor. And to prove this we were encouraged to use the sensor in an area we hadn't used before. In my case, I used my 'luurrve' handles (sounds much less gross if said in an inappropriately sexual way, don't you think?!) and actually attached it without even seeing what I was doing (although with a little help from the Medtronic team).

Comfort wise, I have been wearing it over 2 days and honestly haven't really noticed it. Provided it is placed higher than your waistband (which common sense said it should be anyway) there is no rubbing to worry about. On top of this, Medtronic have added some extra adhesive material, meaning you don't need the sticky and extremely un-sexy medical Tegaderm that we were encouraged to use before (and left you looking like some sort of experiment). There is no 'flopping about' of the transmitter on the skin which bothered me so last time, and generally it feels very secure.

As for accuracy, although Medtronic only appear to have made claims about the accuracy of the hypo detection, it is actually the accuracy the rest of the time I have been impressed with. While I have still done several tests in the last two days, I have so far not proven the sensor wrong yet and there have been many times when the sensor and blood glucose have matched almost exactly (in fact 10 minutes ago my BG said 4.9 and then sensor now says 4.8.......). Bearing in mind there is a 15 minute difference between blood glucose and interstitial fluid glucose (which is what the sensor is reading), I call that pretty precise.

The biggest test for me knowing now how much the accuracy has improved, will be the longevity of wear. Unfortunately one thing Medtronic have not been able to achieve, is a lowering of the cost. In fact I believe the cost is marginally higher than in comparison to their old sensors. For the old Sofsensors with their sketchy accuracy and their trigger happy warning arrows, it just wasn't worth it. The new Enlite sensors however are vastly improved and if they can remain this comfortable even for 10 days rather than 6, this could just be something which can become manageable.

I will definitely keep you posted about amount of time I can wear it for and how reliable they remain and will let you know what my overall feeling is after the trial finishes. But for the time being at least, this previous sceptic is feeling positive.

Medtronic 'Enlite' CGM sensor launch

The new 'Enlite' sensor launched in April 2011

Well, after having had a few weeks out of the 'blogosphere loop' thanks to barbecues and bank holidays requiring me to go outside and get re-acquainted with daylight, I thought it was time to clamber out of my holiday mode and tell you about the launch of Medtronic's newest product which if the marketing propaganda is correct, should see a real competitor emerge to rival the likes of Dexcom 7+.

Continuous Glucose Monitoring (CGM/CGMs) is something which many people in the Diabetic community are both excited and frustrated about. What is exciting is that CGM means diabetics could now have the tools to monitor blood sugar levels in real time, 24 hours a day without the need for constant finger pricking. It is linked to much better blood sugar control and may aid children and people needing to keep an enhanced level of control (don't we all?). The frustrating thing is the cost and lack of access on the NHS unless you fight a gruelling battle and have a super-supportive diabetes team (harder to come by than you would think).

But regardless of how difficult it can be to secure, CGM is the most promising tool we currently have on the horizon in order to keep diabetic complications and the endless grind at bay. It is also going to be utilised in the 'closed-loop' system which we so often now hear being discussed, which will incorporate an insulin pump and CGM in order to manage blood sugar levels 'automatically'. That is, CGM senses sugars are going up, pump releases more insulin. CGM senses sugars going down, pump is suspended until sugars rise. Simple. We hope.

Medtronic's sensor, which has been around since the dawn of CGM and was in fact (as I understand it) the first sensor produced fit for patient use, has been replaced with the new Medtronic Enlite sensor in Europe after gaining the required CE mark. It appears a very similar device to the previous version, but with some significant (claimed) improvements. Medtronic state the device now boasts a much smaller sensor (69% smaller no less), greatly improved accuracy (over 98% of hypos detected) and a much better system for securing the sensor to the skin. For anyone who has worn a Medtronic CGM sensor, you will know that it never felt particularly well affixed to the skin and required layers upon layers of cling-film style Tegaderm to keep it from 'flopping about' on the skin. As well as the smaller sensor offering hope that the site of insertion may now be less irritated after a few days (as I found during my trial), the improved fixing should offer a much more comfortable, reliable and precise system.

The system also now has a much improved insertion device similar to the way the Quick-sert system works, if you have ever used one. This means putting the thing in no longer means the navigation of oregami style tabs and flaps which the old system involved, which usually meant if you pulled the wrong tab, the whole thing was a sticky mess of flaps to un-flap!

On the 14th of May I will be trialling this CGM for a month and, seeing as I wasn't overwhelmed with the results of the two-week trial I underwent last year, it will be interesting to know whether the sensor is indeed more comfortable than it's predecessor. If it is, the long term goal would be to wear the sensor for longer stints in the hope that the cost of the system would be lowered. As with the previous systems, the CGM will speak to my pump meaning no need for extra hand held diabetic paraphernalia, which as any diabetic knows can grow at an alarming rate. Likewise this also means that I can view my blood sugars at the touch of a pump-button, and can set the pump to alarm when I am approaching the upper and lower limits of my acceptable range, meaning less nasty 4am surprises!

I will definitely keep you updated and will let you know if - as with last time - I am ready to rip the sensor out by the 7th day. Something I hope the improved, smaller and more streamlined design will solve.