Shoot Up or Put Up

My HbA1c results show that my pump and CGM are working for me. But they’re not a cure so what is it about using those tools that’s made the difference?

Metronic Paradigm pump & CGM

Doing the research

I read Pumping Insulin: Everything you need for success on a smart insulin pump by John Walsh.  It’s a weighty tome, but it helped me work out how to get the best out of my pump.

Beyond that, I think there are 6 main areas where I’ve seen major improvements:

1. Overnight levels.

Before – nights were a bit of a blood sugar rollercoaster ride of drops at 3am and rises at 5am. This meant I had to go to bed higher than I wanted to avoid hypos and I’d wake up higher than I’d have liked.

After – I can now go to bed at a 5 and wake up at a 5. I have the basal rate on my pump set to decrease at 1.30am, to ward off the 3am low and then increase at 3.30am to stop the 5am high. Looking at the CGM graphs of my overnight blood sugars helps me adjust the basal rates.

The CGM also showed that as soon as I get out of bed in a morning my blood sugar rises, even if I have no food. Now I take 0.5 units as soon as I get up to counter this.

2. Post meal peaks.

Before – I injected when the food was on the table and I could see what I was going to eat. Or sometimes I’d inject afterwards if I wasn’t sure how much I’d eat. If I was being good, I’d do an injection before a meal and then another after, but that wasn’t something I did often.

After – I conservatively guestimate how many carbs I’m going to eat and bolus for that about 30 mins before I eat, more if CGM shows I’m high. It’s no hassle, I just press a button. Then, when the food arrives I’ll put more insulin in if required. Dessert? Press the button again.

The CGM helped me see the impact of not injecting in advance of meals. I’d always known the theory, but nothing brings it home like an upwardly rocketing CGM graph. And nothing is more satisfying than seeing a gentle rise and fall after a meal, rather than a massive peak on a graph.

And then there’s the bolus wizard on the pump – I always thought I had no need for a glorified insulin calculator but I was wrong, when you get it set up right its much better at working out how much insulin I need than my finger in the air guestimates.

3. Dealing with certain foods 

Before – pizza was a nightmare, if I injected for pizza as I ate it I’d be hypo in a couple of hours and then high for about 12 hours after that.

After – I use a dual wave bolus on my pump when I eat pizza. I set it to deliver some insulin as I eat, but then spread the rest of the insulin over the next 5 hours. The CGM lets me track whether I’ve got it right, and take more insulin early if I see I’m rising. Same goes for plenty of other foods too. 

4. Less time spent flying high

Before – I’d only know if I was high when I did a blood test. If I was having a life and didn’t test for a whole afternoon, that would mean I’d be high for 5 hours and not know.

After – I have the CGM set to alarm if I go above 9.5. Plus,  if I look at the CGM and see that I’m rising fast I take more insulin to try and head it off early. That means when I mess up with carb counting or hormones kick in or whatever other reason means I end up high, I spot it early and take action quickly so I don’t rise as high or stay there for as long.

5. The little things

Before – a biscuit during a meeting or a couple of sweets stolen from a friend weren’t worth an injection.

After – I bolus for pretty much everything (assuming I’m not low of course). I’ll take 0.5 units for a small biscuit or a couple of sweets, it’s only the push of a button and it keeps my levels pretty flat.

6. Correcting highs

Before – If I was a 7 I couldn’t really do anything about it – I didn’t need a full unit of insulin so I was stuck with it.

After – Now, if I’m 7 I’ll take 0.3 of a unit to bring it down to around 5.5. A quick glance at the CGM lets me see where I am and whether I’m rising or falling. It puts the number in context – on it’s own a reading of 4 means I need to eat. With the CGM, a reading of 4 that’s been like that for several hours while I’m watching telly and have no plans to move needs no action at all.

So, the pump and CGM haven’t given me the magic bullet to diabetes control, but they’ve let me tweak my control is several key areas that all add up to better overall results. And better quality of life. It took a lot of research and effort to get to this point, but it works for me and importantly, it’s sustainable. I can manage my diabetes like this long term and have a life.

Beware, what follows has somehow turned into a slightly bizarre piece using animals to illustrate HbA1c result variations. I don’t know where in my mind this came from but bear with me, the real point is that my pump and CGM have made a real difference to my long term diabetes control.

A year ago I graphed my HbA1c results for the first timeand was pleasantly surprised (read absolutely gobsmacked and delighted) with the results my pump and CGM had helped me to achieve.

Pre-pump the graph looks like the results of an Alison vs kangaroo wrestling match. If I tried really hard I could tie that kangaroo down and get my HbA1c around 6.5. Once, I managed a particularly brilliant left hook and floored it to 6.2. Sadly, as kangaroos and HbA1cs are apt to do, the damn thing always bounced back up to around 7 whenever I took my eye off the metaphorical kangaroo.

Then I got the pump and CGM and the graph looks like I taught the kangaroo to ski (yes, I am starting to regret this bouncing kangaroo analogy but its too late now). The downhill ski slope 4 months after starting on the pump was the last significant gradient. From then on the kangaroo lost it’s bounce and became more of an armadillo, wandering gently through the meandering flatlands that made up the next 2 years. My HbA1c flatlined, the slight twitch as it varied between 5.5 and 5.8 the only real sign of life in the graph.

Recent forum debates about whether anyone had graphed the impact of pumps on HbA1c prompted me to carry out my first annual graph update. The result leaves me feeling a bit like Mary – just a little contrary.

I’m delighted to see that there’s been no change; I’ve flatlined for another year with HbA1cs between 5.6 and 5.8 and no significant hypo issues. If I didn’t know better I’d swear I must be dead, such HbA1c consistency is not something I’ve been used to over the last 27 years of diabetes. I still have bad days, random blood sugars, hypos, times when I forget to bolus and times when I’ve had enough of the whole thing, but they’re much rarer now. I’ve found the tool that lets me manage my diabetes as I want to and the kangaroo, if not quite dead, is certainly enjoying a long hibernation period.

So why do I feel so contrary? It leaves me with little more to say on the subject than I said a year ago. What use is that when I’ve got a blog to populate?

I rave about my pump and CGMS. My personal experience is that they’ve enabled me to keep my HbA1c at a very happy level for over 2 years, reduce the range of my blood sugar swings and reduce the number of hypos I experience. And now science agrees with me!

The latest research from JDRF shows that using a continuous glucose monitor regularly (at least 6 days a week) increases diabetes control and enables patients to maintain good control long term. This is exactly my experience.

My consultant never looks convinced when I tell him that I need to wear my CGMS pretty much all the time to achieve excellent results. He seems to think that I should be able to use it occasionally to get an idea of what’s going on, and then fly blind the rest of the time. My view is that CGMS is a tool I use to manage my diabetes day in day out, not something I dip into once a month to see how I’m doing.  Now science agrees with me:

“patients averaging at least six days per week of CGM use had substantially greater improvements in HbA1c compared with those who used the devices less often”  http://www.jdrf.org/index.cfm?page_id=112539

The other interesting bit from the study is the proof that the behaviour of the patient is as important in this as the technology:

“…the study found that regular use of blood glucose testing prior to beginning CGM therapy was an excellent predictor of regular CGM use and thus of improvement in glucose control” http://www.jdrf.org/index.cfm?page_id=112539

Yes CGMS is a great tool, but it is just that, a tool not a cure. I’d argue that if you were blood testing regularly prior to starting using CGM you’re probably someone who is used to putting the effort in to take control of diabetes. Common sense says a more advanced set of tools like CGMS is going to be most effective in someone who is used to making the most of the treatments available to them. I like it when science and common sense agree, it makes me feel that all is right in the world!

Hopefully this research will really help strengthen the argument for all those who are currently lobbying the NHS or insurance companies to provide them with access to CGMS. Good luck to you all!

I went to London for work yesterday. Not a major event really, I go a few times a month and it’s only a couple of hours by train. For some reason though the world was against me yesterday.

- 0630: Leave the house.

- 0635: Return to the house having remembered that I haven’t picked up my meter.

- 0705: Get to the station and ladder my tights getting out of the car.

- 0715: Get on the train and spill my hot coffee on my leg, luckily though I haven’t changed the laddered tights yet, so at least that’s something.

- 0800: Go to the bathroom to change my tights. Somehow during this escapade I manage to pull my infusion set out.

- Because I’m a bit of an idiot and am allergic to carrying lots of junk around I don’t carry a spare infusion set when I’m only out for the day – bad diabetic!

- Because I’m not a complete idiot, I do carry a syringe so that I can get insulin out of the pump should I accidentally remove an infusion set on a train.

- 0805: Stop muttering about the infusion set nightmare and get on with dealing with it.

- 0806: Realise I’ve forgotten what it’s like to use a syringe in public – the man opposite me looks at me a bit strangely as I disassemble my pump and use the syringe to draw insulin out of the reservoir.

- 0807: Wimp out of starting a diabetes education session with the man opposite as my brain is occupied with calculating how much to inject to compensate for the basal I’m going to miss, conscious that I have an important meeting at 1100 that I don’t want to hypo in.

-  0808: Realise that my diary is back-to-back with meetings pretty much all day which will make injecting every couple of hours a bit of a nightmare. Decide to keep an eye on CGMS, aim to inject every 2 hours and deal with problems as they arise.

- 0820: Realise that for all the time I’ve been dealing with the infusion set issue and wondering how I’m going to keep myself alive for the next 12 hours the woman across the aisle has been doing her make up. Why can’t my life be that simple?

- 1127: CGMS alarms to tell me I’m high. Normally I’d press a button for a quick bolus of insulin and no one would notice, but my only way of getting insulin is to take my pump apart and use a syringe. I decide that my kidneys won’t fry from sitting in excessive glucose for the 30mins it’ll take to finish this meeting.

- 1200: Most important meeting of the day is over and CGMS shows 14.6. I resist the instinct to just press a button on my pump and get the syringe out again for a splash of insulin to correct the high and some more basal to cover the next few hours.

- 1405: Why can I smell insulin? So that I can keep track of how much insulin I’ve injected, I’ve been bolusing the same amount on the pump every time I inject. This info is incredibly helpful but as the infusion set isn’t actually in my skin all this insulin is running down my leg and my tights smell of insulin. Nice!

The day continues – check CGMS; thank the god of diabetes tech for CGMS which makes this whole palaver slightly easier; inject; do my job; repeat.

- 2000: Arrive home and insert new infusion set, I feel whole again! Blood sugar is 13.8 which isn’t at all bad after a busy day of managing with only fast acting insulin and a syringe.

- 2245: Jump out of bed to put a couple of new syringes in my handbag for any future emergencies.

- 0257: Remember that I know someone in the London office who also has a pump and who could probably have given me an infusion set. Idiot!

I’m Alison’s pump. She talks about me a lot so I’ve hi-jacked the blog to tell my side of the story. I don’t have long because we’re not apart often so I’ll get straight to it.

I’ve been with Alison for over 2 years now and overall I’d say we get on well. She’s a very enthusiastic owner, she makes me blush at times the way she raves about how fantastic I am. And so she should, I have integrated CGMS, I’m at the forefront of diabetes tech. Personally I don’t think she uses all of my capabilities – I’m sure she could spend more time downloading and analysing all the data I collect for her but apparently she has a life she wants to live.

Most of the time I get to sit in pride of place on her waistband, although don’t think I haven’t noticed that for parties that involve a posh frock I’m relegated to the bra, out of sight. That doesn’t do a lot for my ego.

This job has some good perks. She’s taken me white water rafting, sailing and on safari. I like it that she never leaves me behind although it was a little embarrassing when she spotted one of my friends in the middle of the Costa Rican jungle. Despite it’s owner speaking no English I had to endure the shame of her and Alison attempting to compare pumps via the medium of mime. I was willing my battery to run out so I didn’t have to witness the humiliating spectacle any longer.

I don’t want to sound ungrateful, Alison’s a good owner, but she can be a little hard to live with at times.  

She has a tendency to shoot the messenger. I can’t predict how she’s going to react when I have to tell her that her blood sugar is too high, it’s like Russian roulette. If we’re in public I’m generally safe, she’ll acknowledge the high and put some more insulin in quickly and discretely. If we’re alone it’s a more hit and miss affair. Sometimes its fine, other times there’s furious muttering and occasional violence. Thankfully she’s only thrown me on the bed so far but she does talk about pitching me out of the window which I think is an unnecessary over-reaction. At times like this I fear for my safety.

There’s one thing though that hurts above all else. She thinks I don’t know, but I’ve seen her looking round at other pumps, seeing if there’s anything better on the market, eyeing up my replacement. I know I’ve got less than 2 years until I’m out of warranty and then what? I need to start planning for my future.

The things I know about Alison you wouldn’t believe. We’re rarely apart; I know everything about her, what I’ve told you so far is just a taster. If you want the more salubrious bits, please send money. I have to fund my retirement somehow.

If my inbox is anything to go by, how to secure NHS funding for insulin pumps and/or CGMS is a bit of a hot topic at the moment. There aren’t any magic answers, and personal experience taught me that tenacity and perseverance were pretty key to winning the battle, so for what its worth, here are my thoughts.

Understand the product – what is it that you want and why? How will you use this kit to improve your control or your quality of life? Be clear in your own mind about the benefits to you. Speak to the local rep – could you maybe trial the CGMS for a week to see if you like it and if it makes a difference to you? Take a look here for what I think are the main benefits to me.

Understand the market – what guidelines are out there? For pumps, INPUT have a great summary of the guidance.  For CGMS, there is very little guidance out there so you’ll probably need to fight on an individual basis. Medtronic have a summary of what little guidance exists.

Get your healthcare team on side – if your consultant is vehemently anti-pumps I’d recommend you find a new one. Try INPUT to find out who in your area has a good reputation for supporting pump use.

If your diabetes team just need a bit of gentle persuasion, show them the evidence. The download-able marketing literature from Medtronic covers the basics and quotes some of the major research projects that prove the benefits of CGMS. If you want more detail, try here for a reasonable summary of the research.

Use the suppliers - at the moment there’s only Metronic who provide CGMS in the UK. Contact them and ask to speak to your local rep. See if they know of any Drs in the area who are pro CGMS. When you know which clinic would suit you, head down to your GP and explain why you’d like to be referred for your diabetes care to that particular clinic.

The Dr says its too expensive – “Every time I have brought up continuous glucose monitoring with my diabetes nurse, she has said there is no way the NHS would cover it (no point even trying, apparently)”. To be blunt, it isn’t the job of your Dr or nurse to decide what the NHS will and won’t fund. Their job is to work with you to decide what is clinically the best treatment for you. Your local primary care organisation decides what they will and won’t fund, based on NHS guidelines or on an individual assessment of your case.

With your healthcare team on side, you now need to get financial approval. In the UK this will come from your local primary care organisation (PCO) - basically the NHS body who use our taxes to commission healthcare from hospitals and other providers on our behalf – in England and Scotland they’re called Primary Care Trusts (PCTs), Wales have Local Health Boards (LHBs) and Northern Ireland have Health and Social Services Boards (HSSBs). So we don’t lose the will to live amongst the complexities of the NHS, from now on I’ll call them PCOs.

If they agree that what you’re asking for is medically necessary, your Dr should write to your PCO to request that they fund the treatment. Ask for a copy of this letter, that way you know who its gone to and can chase it directly rather than via your Dr.

Personal experience showed that it took my PCO 6 weeks to respond to a letter. If I took that long at work to respond to a letter, I’d be sacked. I now give the PCO 2 weeks to respond, and then give the addressee of the letter a gentle nudge via phone or email. “I’m just calling re X to check you’ve got all the information you need” is a good opener – it brings it to their attention and means you get to know early on if they need more info.

Question, question, question. Without wanting to tar everyone with the same brush, we do seem to have a culture of prevarication in the NHS and a desire to do anything other than actually make a decision. Don’t be afraid to ask questions. Do they have everything they need to make a decision? If not, what else do they need? When can you expect a decision? Who will make the decision? What criteria will they use? What’s the appeals process?

Have your evidence – you want this, so make it as easy as possible for them to say yes.

Are there any NICE guidelines? If so, be clear about what they are and how you meet them. If there aren’t you need to point out this is not a general policy decision they’re making for everyone in the PCO area, this is something they should decide based on the merits of your case.

What are the consequences of not funding this request? eg severe hypos impacting on your ability to work, fear of night-time hypos as you live on your own. If you’re a woman, talking about the impact of poor diabetes control on any imminent planned pregnancy soon gets attention.

I felt I was being fobbed off and generally ignored when I applied for funding, so I went straight to the top and emailed the Chief Exec, cc my local MP. I explained the issue and that I felt I wasn’t getting a good quality service. The Government promises patient choice within the NHS, but I felt my PCO wasn’t making appropriate efforts to enable this.

There aren’t any simple answers to getting funding for CGMS, it is a battle but as more people fight that battle it will get easier. To summarise, here are a few things that I think are important:

• Be clear about what you want and how it will benefit you in the short and long term
• Get the support of your medical team – if they won’t support you, consider finding a new team
• Gather the evidence to show that what you’re asking for actually works - if you’re struggling, ask the suppliers to provide you with the evidence – this is their product, they should be able to point you to the research that shows that it works
• Keep the pressure on - you want this funding so you need to drive it through the system. Find out who is dealing in your PCO and speak to them regularly. Understand the process and always know what the next step is. 
• If you’re not getting anywhere, escalate. Writing to the Chief Exec and getting your local MP on board generally helps to clear any blockages. 

That’s what worked for me. If there’s anyone else out there with pearls of wisdom on how to get NHS funding, please share!

Wizards and quidditch and death eaters abound in the UK this week as the latest Harry Potter hits our screens. If pushed, I will admit to having read all the books and I will be going to see the film, but I won’t be fighting off the hoards of teenage girls to see it this week. I think I can wait a while until the mayhem calms down a little. 

Wizardry is an often overlooked tool in diabetes care. In fact, when I mused about pumps the other day, I completely omitted to mention the mystical marvels of the bolus wizard. Now is the time to correct such an omission (thanks to Roger for pointing it out).

The ultimate book of spells for young wizards acquiring their first pump is Pumping Insulin by John Walsh . It was here, before I’d even attended the Hogwarts Academy for Novice Pumpers that I first discovered the wonders of the bolus wizard.

Basically, once you’ve programmed it with a few ratios – worked out either through a spell provided in Pumping Insulin or with some help from your mystic master (otherwise know as a diabetes specialist nurse) – it’s up and running.

You simply tell the pump what your blood sugar is and how many carbs you’re planning to eat and it makes a recommendation about how much insulin you should take. It cleverly takes into account any other insulin it knows you’ve taken recently so you don’t dose twice for the same high.

Here comes my second admission of this post, not only do I quite like the Harry Potter books, I also rather arrogantly thought I had no need for a bolus wizard. I’d been flying high on the diabetes broomstick for many, many years. I could calculate how much insulin I needed for a bowl of pasta as quickly as Hermione can say “Expelliarmus!” . I didn’t need a machine to tell me how to reverse the impact of the “too much ice cream/not enough insulin” spell.

Listen carefully; you won’t hear this often…I was wrong. My bolus wizard is far more accurate than my previous finger-in-the-air type guessing. That’s not to say I treat it with the reverence of Dumbledore and never challenge its’ teachings. It doesn’t know I have a game of quidditch or a battle with some death eaters planned, so sometimes I’ll knock a bit off the recommendation to allow for that. Equally, if the CGMS tells me I’m rising faster than the Snitch in the final seconds of a game, I’ll add in extra insulin for that.

Overall though, it’s marvellous. And it feels like a real step towards an artificial pancreas. If we already have a machine with the ability to calculate insulin requirements based on glucose level, it isn’t a huge leap to automate that process.

The elves tell me that many people on pumps don’t use their bolus wizard. Perhaps, like me, they felt they were wise enough without it. I can hear the legendary words of Dumbledore now “use the wizard my friend, it will guide you on your journey”.

Omnipod pod and PDM

I have a couple of friends who are in various stages of getting themselves insulin pumps (do I really go on about it that much??). Having had similar conversations with each of them about what’s currently on the market in the UK, I thought a quick overview of some interesting recent developments in the UK pump market might be useful.

Bear in mind I’ve only used a Medtronic Paradigm pump, my thoughts below are based on reading reviews and publicity material, playing with samples at conferences and talking to people. This isn’t a scientific, double blind randomised control trial, it’s just my musings.

The Omnipod is a step nearer to the UK

Our friends over the pond have had the tubeless Omnipod for a couple of years now. The overall impression from people who use it seems to be very positive (save for a few reliability problems early on that seem to have now died down).

Personally I like the idea but have reservations on two fronts – firstly the pod is pretty large to have attached to you at all times. On a standard pump when you disconnect to shower or whatever you’re left with an infusion set roughly the size of a 10p. As you don’t remove the Omnipod pod for the entire 3 days until you replace it with the next pod you’re permanently attached to something roughly the size of half a small apple. My other concern is the tubelessness. My pump is attached by a piece of string which does have the unexpected benefit of my not being able to forget it or lose it easily. I don’t have to remember to pick it up before I run out the door as it’s attached to me. As the Omnipod is tubeless, that means you have to remember to carry the remote to do any dosing. Not an insurmountable problem I’m sure, just something that concerns me.

Insulet Corp recently gained a CE mark for the Omnipod, meaning that they can now sell it throughout the European Union. News reports say “the product will be available to a limited extent in selected markets in 2009 with broader availability in 2010“. Always good to see more choice on the market. One interesting issue for Omnipod entering the UK market may be their website – their .co.uk address is currently owned by a company that “specializes in mid-20th century designer furniture and distinctive accessories”!

Paradigm Veo

The Paradigm Veo is already here!

Having had to wait impatiently for the Omnipod to hit the UK shores (and it’s still not here yet), it was a nice surprise to see that we actually got the Medtronic Paradigm Veo in the UK before our American cousins.

The Veo is an upgrade to the existing Medtronic Paradigm Real Time – it has some tweaks to the CGMS but it’s big new feature is that if you fail to respond to the CGMS hypo alarms it will suspend insulin delivery for 2 hours to help reduce the risk of severe hypoglycaemia. Thankfully severe overnight hypos haven’t been an issue for me since I was a teenager struggling with ye olde insulins of Ultratard and Actrapid, but if this had been available back then it would have been life changing for me. For more detailed info try the INPUT blog.

Accu-Chek combo system

New combined approach from Accu-Chek

Pumps are very personal things, what suits you depends on what kind of life you lead, what you like, what you don’t like etc. What’s really exciting at the moment is the diversity in the types of pumps and features that are available, we’re really starting to see a market where each supplier has a defining feature whether that’s the lack of a tube, integrated CGMS,  great remote functionality or the ability to give really small doses of insulin like the Animas 2020 . The next step has to be to get all the good stuff into one pump. For what it’s worth my wish list includes:

• CGMS. This is my “must have” pump feature. I’m not interested in having it as a separate device, that’s just too much stuff to carry. It has to be integrated.
• A remote with full functionality would be handy – so I can hide my pump in my bra when I’m wearing a nice dress and not have to fish it out at the table to change my basal rates.
• If I’m carrying a remote, it’d be nice for it to have built in glucose meter so that’s one less thing to carry.
• I’m surprisingly ambivalent about tubing. If I could get over the fear that I’m going to find myself on a train to London having left the only way of controlling my pump on my bedside table – and they could make the pod smaller – I’d certainly think about going tubeless. It’s not a big deal for me though; the tubing on my pump isn’t something that really bothers me.

Here endeth my thoughts for the day. Comments?

In 1994 when I was 14 years old I spoke at the British Diabetic Association 60^th anniversary conference about my hopes for the future. I’d already had diabetes for 10 years by then. What did I want? The ability to see what my blood sugar was at any time without having to prick my finger.

Fast forward to 2009, I’m so close to 30 it’s undeniable; I’ve had diabetes for almost 26 years and I have such a device. It’s not as perfect as I’d dreamed but it’s the biggest leap forward in diabetes care that I’ve experienced.

Now for the techie bit – I use a Medtronic Paradigm combined insulin pump and continuous glucose monitoring system (catchy name, I know!).

If you look around on the web you’ll find loads of people talking about CGMS here and here and here – they seem to polarise opinion, people love them and hate them with equal passion.

I wouldn’t swap mine for the world, but there have been occasions when I could have happily thrown it out of the window. Here are the top issues I hear people complaining about:

• CGMS readings are not identical to meter readings
  - this is because they are measuring different things (CGMS measures glucose in your interstitial fluid, not blood glucose) and there is approx 15 minute time lag. I don’t find it a problem, its not thatimportant whether you’re 4.5 or 5.5, the fact that you’re around a 5 and you can see which direction you’re heading in is enough. I’ve
  always found the trend to be accurate, i.e. whether I’m rising or falling.
• CGMS can’t keep up with fast changes – I find it loses accuracy if you’re rising or falling very quickly – the sensor can’t keep up with the rapidly changing BG levels. For example, if I see that I’m 10 and rising really fast, I’ll always do a finger prick because it’s likely that I’m really around 14 and the sensor is lagging behind. Without the CGMS I wouldn’t have known I was rising in the first place, it alerts me to the need to do a blood test and check.
• You still need to do blood tests – I still blood test around 3-4 times a day to calibrate the machine and to check any really low or high readings. In the first month or so I tested more. It takes time to learn when you can trust the readings and when they’ll be a bit out.
• It takes time to get used to - from day 1 I’ve believed the benefits have outweighed the effort it takes to get
  used to the quirks of the system; however I do read about people who are disappointed because it isn’t perfect and takes some getting used to.

Now for the positives.

I really love my pump and CGMS and it has made a huge difference to my care. I’m aiming to keep my HbA1c in non diabetic range, i.e. below 6.2%. Before the best I could do was 6.5% but it was really hard work. I’ve been using the CGMS for 2 years and my HbA1c has been below 6% the whole time (and more importantly I’ve had a life too!)

So what do I love most?

• The ability to see what my BG is at any time and take action accordingly.
  e.g. I’m in a meeting and see that I’m 8 and rising. I can take 0.5u of insulin and bring it back down to around 6.5. Previously I would have been unaware of what my BG was until I did a blood test hours later by which time I would have been above my target level for several hours. This makes it so much easier to get tighter control.
• The ability to see your BG in context rather than as a one off reading.
  e.g. I see that I’m a 4. If that’s from a single blood test I have to eat to be sure I’m not going to go hypo. Now if I see I’m a 4 I can look at the history and see how fast I’m dropping, keep an eye on it for 15mins and see if it continues to drop or whether its actually bottomed out and I don’t need to take any action.
• The reassurance of having the alarms means that I can be more aggressive with my control. I know that if I go low in the night I will get woken up and can do something about it. This is especially useful when I’m working away from home and am alone in a hotel room. Previously I was concerned about going hypo overnight so I
  ran my BGs slightly high when away from home. Now I have the confidence that the CGMS will alarm and I can eat something before things go too far.
• The ability to spot the impact of certain foods.
  For some reason I go through the roof when I eat Special K breakfast cereal – I had no idea until I started using the CGMS. Now I don’t eat it any more. Previously I never took insulin 20mins before a meal, now
  I make sure I put some insulin in at least 20mins before because if I don’t, the post dinner peak on the CGMS is huge and if I make the effort to put the insulin in early I can really flatten out that peak. The pump of course makes a real difference there – I wouldn’t inject several times throughout a meal but with the pump I just push a button whenever I want some insulin.

So, why hasn’t everyone got one?

Firstly, it’s not a cure, its just another tool you can use to manage diabetes and it takes effort. Some people simply don’t want to be bothered with the amount of information a CGMS gives them. Fair enough.

Secondly, its new technology so huge levels of scepticism exist about whether it delivers long term benefits. Plus, not everyone (and that includes medics, patients, policy makers etc) is comfortable with new technology and many are reluctant to embrace it. My personal experience shows that it works for me, but we’re starting to see larger
research studies that show that it works for other people too – take a look here to see an overview of the research so far.

Thirdly, its perceived as being expensive. The actual pump/CGMS costs the same as a normal pump, but the sensors cost around £35 each. They’re licensed for use for 3 days each, but I use mine for 7 days and I know people who use them for longer. I’ve brought my HbA1c down significantly and sustained that over 2 years – that reduces my risk of
complications in the long term and therefore also the potential cost of those complications. We have to look at healthcare costs across a lifetime, not over a year. In short, in the immortal words of a well known hair care company, I use it because I’m worth it.

So, it’s not perfect and like all other aspects of diabetes care, you need to put some effort in to make it work but personally, I wouldn’t swap my CGMS for the world.