Sitting on the fence

Version 2

I promise there is no mention of “The referendum” in this post. Except just now.

So. Since my last blog post, Tim Peake has spent 6 months orbiting the Earth and come home again. I don’t think a new blog post is quite in the same league but it’s a step in the right direction.
In March I attended the TAD (Talking about diabetes) seminar in London and actually met (face to face and everything) some of the people I’ve had the pleasure to tweet with for some time. The speakers, and their talks, were incredibly moving and inspiring. It was my first proper experience of being amongst fellow PWD, which was both surreal, unnerving and liberating. I still felt self-conscious testing while we were sat in the lecture hall. I could have done with an entire week to get to know everyone properly. An hour or two in between talks wasn’t anywhere near enough, although I did join Anniecoops afterwards in a bar (in St ‘Pancreas’ station!). I think I’d like to do it again sometime soon. A meetup that is, not drinking with Anne. Although…

The trigger for this post was my pump clinic appointment on Wednesday (15th June). I hadn’t basal tested for ages and was too busy to manage any before going. I expected a telling off. I was, as usual, panicking for no reason. My DSN sees me as someone who has lived with diabetes long enough to be sensible, even if I don’t obey all the rules. She has an optimistic outlook. My most recent HbA1c was 6.7 in old money, so I’m not doing too badly. We (she) decided I’d go and donate some more vials of blood while I was there. So I’ll get a more up to date figure in a week or two.

One subject that came up in the conversation was Accu Chek Insight cannulas. Apparently, the local rep has said that Accu chek has changed its policy regarding set changes. The tubing needs to be replaced along with the cannula every 2 to 3 days, instead of every 4 to 6, as at present. I can’t remember the exact reason but it simplifies things a bit. I’m forever trying to remember whether I need to change just the cannula or the full set. I also confessed that I sometimes (often) go to 4 days before getting round to changing. She wasn’t impressed and stressed the importance of prompt changes. Like the cannulas, I’ll try to change the habit.

The surprising news, that has given me a bit of a dilemma, was when I discussed CGM and the Libre. They have been given a number of Libre handsets with a single sensor included. She’s offered me one but on condition that, if I don’t/can’t continue to buy sensors I need to give the handset back.
My concern is getting the most out of just one sensor. I can’t justify buying them at the moment so would want to make that fortnight count. My lifestyle is such that I can eat the same things 3 days running but be doing completely different amounts of exercise on each. That means I’d struggle to differentiate the effect of the food/insulin from exercise. So until I can see a way of doing this, I’ll have to think on it.

In general, I’m getting on ok with the insight, despite my constant hatred of the handset. It’s been thrown away in disgust a few times, usually when an E57 error announces intself just as I’m about to sit and eat, after spending ages preparing a nice meal. I don’t like it, I’ll never like it and I’d love to be stuck in a lift with the person who decided it was fit for purpose. I’m also on my third belt clip. They’re extremely flimsy and tend to get caught as I’m getting in and out of the car. I refuse to buy an improved version.
I’ve also been extending my multi waves a bit more. I used to stick with 1hr30mins to 2hr30mins but have recently been stretching to 3hrs+. For Chinese I go to 5hrs. It seems to make a positive difference. I eat a fair amount of carbs, don’t worry too much about low fat and my portions are large. No idle boast. This means I probably don’t digest meals too quickly. Extending seems to have avoided most of the 2 hour hypos and 4 hour spikes.
I’d be interested to hear any advice or comments, good or bad. I realise I don’t do things the same as most and have some old-fashioned, probably bad, habits. Feel free to ridicule and rebuke me.

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A definite keeper…

I thought it about time I posted an update to share my thoughts on the first couple of months with my Insight pump.
My initial feelings of elation regarding the pump haven’t changed. The love affair continues. I have had 3 occlusion alarms, one with obvious air bubbles in the tube. I don’t know how they got there but there they were. I don’t know what caused the other 2 but possibly a blockage at the ‘sharp end’. I did get 3 or 4 while on the Combo so maybe I’m just prone to them.
The whole set change thing is a dream. Clear menus guiding you through each step, so you can’t get lost, even if you get interrupted half way through. I’m averaging about 10 minutes for a full cannula, tube and cartridge change but I am prone to tweeting or browsing while I do it. I needed both hands and full concentration with the Combo.
The handset still niggles me. One of my main concerns for both pump and handset was battery life. The pump has only just got through it’s first battery after 6 weeks and the handset can go for 3 days at least. I tend to charge it overnight every 2nd or 3rd night. I don’t want to risk running it down since the handbook warns that this can damage the battery. It’s less of a nuisance than I expected it to be, but would have preferred an option for normal batteries, if only as a backup. In the past 7 weeks, since last posting, we’ve been away for a mini break. Whilst away for 4 days, I only charged it once so it wasn’t intrusive. But… every time it hesitates between steps I feel my blood pressure elevating and the startup noise is plain annoying; especially in the middle of the night. I’ve only had a couple of hypo wake ups but, as I feared, the need to unplug the meter from the charge lead and wait for the meter to start up before inserting a test strip wastes precious time and drops the blood glucose further. I’ve yet to contact Roche about it but suspect my opinion won’t trigger a major redesign. Let’s hope they don’t wait for something more serious to prompt it.

In day to day use, it’s easy to wear on a belt. I don’t slip it in a pocket since they’re allocated to other things. Namely, iPhone, jelly baby tin and loose change. There’s only so much space in a trouser pocket. I would imagine if we get a Summer this year I’ll need to find other ways to carry it. I have a Spibelt but rarely use it. It’ll be more useful if I’m sporting the shorts and T shirt look. I’m still keeping the handset in the mini camera case. It’s awkward but manageable. Meters are fairly easy to carry around but the strip pot and lancet device have to come too. Some things can’t be solved by new technologies.
More recently I’ve been experimenting a bit with bolusing. I’m somewhat stuck in old habits. As anyone diagnosed before the industrial revolution will know, routine and fixed habits were ingrained back then. 3 meals per day of fixed carb portions at approximately the same time each day. Hard to imagine now but that was standard. Due to a lack of exposure to other people with diabetes, no proactive HCPs and my own reluctance to ‘break the rules’, I’ve tended to be more routine-led than some others, even now. I do vary mealtimes, certainly vary carbs and mess with boluses/TBRs but my basic routine is the core. I want to break away from this a bit. As an example, not long ago I would weigh (or deduce the weight of) all the food on my plate, as much as possible. I could then know the total carbs in advance and be able to test and bolus the full amount before eating. This isn’t easy when some prepared foods only state carbs when cooked. So I now bolus the known portion beforehand and bolus the remainder after I’ve plated up and worked out the carbs. This sounds basic but it’s quite an advance for me. I’d like to try prebolusing properly (small bolus well in advance of eating and remainder closer to meal) (I think) but without a CGM it’s hard to know what effect it’s having.
I’ve always maintained that food is the greatest variable a PWD has to contend with. We all process it differently, at varying rates and with varying degrees of absorption, but there are maybe 3 or 4 standard insulin profiles available for us to match the carb spikes accordingly. And very few of us know when or to what degree they happen. CGM is the only tool that can show that but most PWD only get access through self-funding. Maybe this will change in the future. I hope so. Meantime, it’s trial and error, experience and intuition, that guide us. Tools that cost the NHS nothing, except a few extra test strips here and there.
One thing for sure, all of us, I hope without exception, would wish to have no further need for repeat prescriptions. The funds we suck from the NHS coffers are not by choice. The only thing we can do to minimise it is to manage our health the best we can and hope that we won’t need anything further adding to the list. Apart from statins.

Everybody has to take those!

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A little insight

Now I’ve had the Insight pump for a week I thought I could safely write some words about it. When I first read the specs I was shocked by the short battery life of both pump and handset. Having used a fair few different meters over the years I’ve got used to expecting the battery(ies) to last weeks, if not months. The pump uses an AA battery, as did its predecessor, the Spirit Combo. It supposedly lasts about a fortnight or so with predicted normal use. After a week, the display is reporting 100% battery capacity. Whether this will gradually decline or suddenly drop I’m not sure. But since Accu Chek/Roche provide batteries I’m not too fussed about it. Battery changing is very quick and simple.

Insight pump & handset

Insight pump and handset with strips

The handset I still have concerns about. It’s advertised as having about 3 days battery life. It has a rechargeable, mobile phone type, battery. They advise a nightly charge to ensure it’s always fully powered. I’ve experimented a bit by leaving it one night and was surprised that, even after 2 days continuous use, the battery level indicator hadn’t moved far down the small icon. I’m assuming it would drop a bit quicker once day 3 came around. I didn’t want to risk that so charged it that night. The biggest problem I see with this is that it doesn’t allow blood testing while charging. So those 3am hypos where you’re not sure which alien planet you’re on, could be made even more fun by having to unplug the cable before you test. Add to that the annoyance of the meter then defaulting to the main menu, from which you have to navigate to the test function before you can actually test. I suspect that, when you wake up in the 2s, tired, confused and scared, this could be quite dangerous. Not ideal when every second, and muscle used, counts against you. I plan to contact Roche about this to find out what they were thinking when they designed this ‘feature’.

Insight pump rear

Aluminium rear of pump

Insight front view

Front of pump

Power issues aside, I’ve fallen in love with the pump. It’s slightly smaller than the Spirit, but its main advantage is the smooth, uncluttered casing. The tubing exits via the innovative headshell and, apart from two discreet buttons on one edge and a button array on the front, it’s sleek. The rear casing is, I presume, aluminium (This can get cold in bed and you know when you’ve found it!). The front has a colour display that shows everything you ever wanted to know via a pretty simple menu. You can do all the usual stuff via this; TBR, bolus, basal rate change, etc. it also gives clear, step by step instructions for cartridge change, tubing prime and cannula fill. There’s also a zoom function for anyone struggling to view the text. It seems to have been designed with users in mind. Changing cartridges and/or tubing take a couple of minutes with practice. The headshell has the tubing incorporated. This stays in place for up to 6 days. The pumpcarts are 1.6ml novorapid, but apparently refillable 2ml should be available at some point. I’m getting 3 days use out of each cart so far so I’m not unhappy with that. It really is easy. I’ve been using the Flexlink plus cannulas since I started pumping in October, so I’ve not had to change. The only holder that’s supplied is a belt clip but this is very low profile and holds the pump close to a belt or other clothing item. It feels pretty secure and doesn’t have any spring mechanism that explodes every time it catches on anything (car seats for me). I’ve been told that there is latent CGM compatibility built into the pump. Presumably Roche are developing a CGM and maybe that will have some sort of suspend feature. I doubt it will be affordable for most users though.

Now, the handset. Oh dear. I’d been using the Aviva expert for a few years. I liked it, despite a few quirks. This made the combo handset very familiar. Just an extra menu for the pump display emulator. This new handset looks nice, with its touch screen colour display and aluminium bezel. It reminds me of a budget smartphone. If such a thing exists. It has basically the same functionality as the combo handset. But everything’s full colour, icon driven. This is ok but it does seem a lot slower than the combo. To get from test to bolus takes a lot of steps and each one has an accompanying busy whirring symbol. The bolus wizzard seems to take a loooong time to give a result. You don’t want to be in a rush. Maybe I’m expecting too much but I feel they’ve designed this for its own sake. It doesn’t offer anything extra to most people. I can see that it may assist users with limited vision or less confident users with clearer visual instructions. But essentially I see it as a combo in a cheap iPhone. Circa 2009. A small but important detail is the strange choice of carry case I was given. It’s a soft case, similar to the other aviva series meter cases. It has an elasticated loop for the strip drum, one for the lancet device and another for the meter. But this goes across the middle of the touch screen. So the meter has to be removed before use. And best of all, the meter is too long for the case to zip up. It has to be pushed so that it overlaps the strips. Clearly not designed for this meter at all. It may seem trivial but we have to carry this kit around all day. I would have thought someone would have come up with a solution. For now, I’ve bought a compact camera case that keeps it all together. All this said, I don’t feel I can’t get on with it. I can and I do. I just feel they could have either improved the speed and responsiveness or incorporated some new features. It does offer Bluetooth connectivity which is an improvement on the old IR transmitter. If they could develop an app to download the data to a phone or tablet, that would be nice. At present it has to use the 360 software, which is only windows compatible. I’ll have to buy a Bluetooth dongle for my laptop.

insight in belt clip

Pump securely held in belt clip

In summary, the pump, for me, is a very well designed piece of hardware. The handset is functional and visually pleasing but not an advancement, in my opinion. I’m not going to give it back and will probably get over all the negatives in time. I look forward to seeing if any custom cases appear on the market or whether Roche offer periodic firmware upgrades. Either way, they can feel proud of the pump and the handset can bask in the reflected glory!

Any opinions are purely my own (who else would want them?) and I am in no way connected with Roche or any other organisation. If they wish to ask my opinion before they design another handset, I’m right here.

(All photos taken by, and copyright of, the author. May be reproduced with permission)

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Rejected

Something ive always found odd is the way the NHS handles prescriptions for long term illnesses, such as diabetes. I hate inefficiency. Having to request the same stuff every month, or usually every 3-5 weeks, due to variable use, is not only time consuming but costly too. For both the NHS and the patient. With no cure on the immediate horizon, and a need to have some spare supplies, it seems the ethos of 28 days meds at a time is a bit ridiculous. 

As type 1s we are trusted to carry out every function needed for our health and wellbeing, except ordering meds and supplies. In fact, now I’m on a pump, I order most stuff direct from the manufacturer. I’m trusted not to abuse that privilege. Why then, can I not have the same arrangement with the NHS?

My GP has no interest in, nor knowledge of, my day to day requirements. Despite this, several times I’ve had test strips removed from a prescription. When I’ve complained they’ve always been reinstated but, despite asking, I’ve never found out why they’ve been removed, nor who has taken the decision without involving me first. I’ve even offered to give an informal talk to explain the needs of a type 1. I was told they’re too busy. So much for patient engagement.

The latest episode has seen the introduction of the myhealthonline scheme across Wales. It’s a web based prescription system. The patient is given access to their own repeat meds and can request them via the website. Brilliant idea. My surgery announced the scheme via letter 4 or 5 weeks ago. As instructed, I obtained a form from reception, filled it in and returned it. I was told to call back in a week for my PIN number. I collected that last Friday, logged in and requested the insulin I need to get through Easter. The following morning I logged in to find that it had been rejected. I spent the weekend stressed, worrying what sort of battle I may have getting enough insulin before Friday. It makes me realise that, whatever messages I read on Twitter about patient centric healthcare, it isn’t likely to be universal. Not all HCPs are equal. 

At 8.30 this morning I’ve rung the surgery to get an appointment. I explained to the receptionist what the problem is. She seemed to anticipate what I was ringing about. Apparently the GPs are not supposed to take any action on requests. My GP had done. Without finding out why I’d requested insulin, without having knowledge of my clinical needs and apparently against the practice guidelines. The receptionist has noted my problem and promised to resolve it. I’ll have to wait and see what, if anything, gets passed through to the pharmacy. I’m annoyed that I’ve been unable, yet again, to actually change anything. The problem is resolved for now. But nobody has gained any insight or furthered their knowledge of the issues we face when ordering and collecting supplies. There seems to be no time for anyone to listen to, let alone take interest in, the needs of the patient. This may be a local issue. But I don’t think so. I’ve always believed that a system is only as good as the person implementing it. Sadly, I don’t trust some of the people I rely upon for my health. Some are excellent. But it’s a gamble which of these people have my life in their hands at any time. Consequently I’d feel safer removing them from the equation. My GP doesn’t know me. He clearly doesn’t trust me to manage my own meds. I’m fairly certain, if I asked his advice about my diabetes management, he’d tell me I’m the expert. It’s something I’ve been told constantly over the decades. Until I want some autonomy. 

Perhaps if I could request meds directly through my pharmacist it would introduce a more human, more understanding, more flexible and personalised approach. I’d be more than just a slip of paper to sign. Or reject. 

 I hope I don’t get ‘rejected’ again but I have a funny feeling I’m going to be going through this process a few more times yet. 

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A bit like buses…

I’ve been on the Accu Chek Spirit Combo for about 5 months now. For a while it felt very strange being connected to a device 24/7. I’ve read that a lot of people can’t cope with that. I can understand that. For me, the pros outway the cons. The ability to adjust basal and bolus to match circumstances in (near) real time is enough on its own, but factor in not having to inject and there’s no going back. I would liken it (in physical terms, discounting emotional and medical) to a catheter or maybe a drip. Everywhere you go, everything you do, you have to consider the tube and pump. I can’t think of a non-medical analogy. Other than a ball and chain, but that implies negativity. Itls a nuisance but then so is sticking a needle through your skin several times a day!

I was told a few weeks ago that Accu Chek were honouring an agreement to transfer recent Spirit pumpers onto the new Insight pump. I looked online at what it had to offer and was surprised to see that there was little difference in features. The case is sleeker and the insulin comes in prefilled cartridges, similar to pens. This apparently means no bubbles, so no flicking and a lot less swearing. The tubing has a built in ‘endcap’ which functions as a cartridge holder and clips to the end of the pump, sealing the tube and catridge. The whole thing is waterproof to about 1m for short periods, so ok to drop down the toilet but not recommended for swimming. The display is colour which lessens the battery life considerably. The handset has been redesigned to resemble a smartphone, complete with touchscreen and USB charging. Unfortunately, the battery life has shrunk to 2 or 3 days. Meaning an overnight charge along with the iphone and any other devices. This is fine as long as there’s access to a charge point. We’re off camping this summer so I’m going to have to find a solution, possibly a precharged charger thingummy. Or a separate meter and then bolus on the pump.

My initial feelings were very negative. I went to a demonstration event 2 days ago and am impressed by the pump. I still have reservations about the handset but feel that I can learn to live with it. I don’t want to look a gift horse in the mouth. So I’m booked in for March 26th to do the swap over. 

The only new feature I could find, hidden away in the manual, is a programmable time lag that delays each bolus, mainly for those with gastroparesis. I’m sure there could be other uses for it. The demonstrator also mentioned that the pump has future capability for CGM compatability. I don’t know if that would be via a firmware upgrade or it’s a latent feature waiting for CGM development. It’s better to have it than that. I may one day be in a position to go down that route.

It does seem a bit odd that I’ve spent all these years injecting, then within 6 months I’m being given my second pump. I’m still very much a novice and consider myself lucky to have one at all. I know there are still plenty who are denied them at all. As the title says, you don’t see one for ages, then all of a sudden 2 come along at onceI hope the same happens for everyone sooner rather than later.

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How it all began… and how things are now

I don’t remember a great deal about my diagnosis apart from a few details that clearly made an impression. It was 1978, I’m pretty sure it was February, and it may have been the 7th. My parents had seen me go through the usual thirst, weight loss and lethargy without twigging what it was. I was 13 and they (and I) put it down to a teenage growth spurt. We didn’t have the luxury of the internet or mass education campaigns, so it was business as usual, until my Mum remembered something another parent had said about diabetes. I was whisked to the GP after school. I remember waiting for what seemed like hours to see him. He tested the urine sample we’d taken and rang the hospital to get me admitted that evening. I elected to stay on the adult ward, because I thought I’d escape the noise and turmoil or the childrens’ ward. I didn’t factor in patients crying out in pain and confusion, nor dying during my stay. I had a series of urine and blood tests and, obviously insulin. After a couple of injections, possibly more, one of the nurses informed me that I’d have to do them myself for life, something no one had thought to tell me up to that point. Over the next few days, I injected myself and got used to unsweetened tea and hospital porridge. I was sent home eventually with my metal and glass syringes, a bag of other goodies (including the infamous urine test kit) and a grapefruit to practice injecting on. It didn’t hurt a bit. Except when I had to inject it in me. And so it went on. From glass to plastic. From plastic to 1ml novopen. From 1ml to 3ml and various insulin’s with ever better profiles. From twice a day to 5 times a day. And then, last October, I was given a pump.

It’s an Accu Chek Combo. The one with a Bluetooth handset, based on the Aviva expert. I only found out about pumps in 2010, when I joined the diabetes support forum and spoke with fellow type 1s for virtually the first time in 30 odd years. I also discovered CGMs (although yet to see one) and learnt about carb counting. Something the NHS had failed to teach me. So I went through a phase of wanting a pump, then not wanting one, to wanting one again. Then I requested one and was told I didn’t qualify. So I pestered and pestered until, eventually, it was agreed that I qualified on quality of life criteria. I’ve had it now for about 3 months and it’s become normal. On MDI, I was forever trying to predict the next 4-6 hours, but with the pump, I can make changes on the fly, with extra boluses or temporary basal rates as needed.

I had a few preconceptions about how it would feel to pump. Mostly I was wrong. It’s better, but more clinical. A bit like the early days but with the benefit of more control, less restrictions and a lot less poking sharp metal through the skin. I wouldn’t want to give it back but would welcome something even better. Maybe longer between cannula changes and/or a bigger reservoir, requiring less frequent refills. I presume there’s a limit on how long the body will tolerate a foreign object through, and stuck to, the skin. Likewise, the insulin in the pump might become less effective with time. But these are the sorts of things I hope for. Along with CGM access. I did ask once, at clinic, about borrowing a CGM. I was told they have one but don’t use it due to it being unreliable. End of conversation. It’s one I may return to once I’m more stable on the pump.

I’m going to look at the new accu chek Insight pump in a couple of days, due to an agreement by Roche to offer it to new pump users as an upgrade. I have reservations about some of the features but will hold back until I’ve seen it and asked the questions.
I hope to write a few words about it and maybe give a verdict on whether I choose to upgrade or not.

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