A little consistency would be nice

Here's a thing... And for once I'm not whining about trying to keep my blood glucose levels in range while attemping some semblance of a normal life.

There are quite a few insulin pens on the market, I think it's fair to say that some are nicer that others. Some offer half unit doses, others permit particularly large single doses. There are even those (actually just one in the UK right now until the NovoPen Echo is released) that automatically record recent timings and doses. There are prefilled disposable ones and more luxurious-feeling metal cased ones. Brightly coloured ones and grown up serious ones. You would think we diabetics would be happy.

However, aside from the fact that many of the pens are actually quite nasty (flimsy, plasticky affairs that feel rather less than reliable), there is something about their design that frustrates me intently. Because there is no consistency in the design of the pen cartridges, different insulins are only compatible with a tiny fraction of a pretty meagre range. There is, of course, no reason for this. Readers of a certain age will remember the development of Betamax and VHS video. After the early excitement of both formats, it became clear to the industry that all the electronics brands would need to produce players compatible with a single format. For many MDI users the paltry choice of available pens is little more than a minor irritation, but I read a forum thread recently where a doctor was looking for an pen device which was easy to use with one hand. Someone suggested a pen which had a spring-loaded delivery via a sliding switch (the Autopen 24), but because of the current limitations such a choice will limit the patient to particular insulins. On the other hand if you are on Lantus glargine and would benefit from half-unit doses there are simply no compatible pens on the market. There are half-unit pens available, but none that fit Lantus cartridges.

There is, as I say, no reason for this. Where formats are common (audio CD, DVD, USB) competition still exists, brands are still able to assert their own identities and strengths. It feels as though development of the pens is seen by the pharmaceutical giants as a bit of a bind. But these companies are investing (probably considerable) R&D budgets into the development of these devices. Wouldn't it make sense then to see the pens themselves as an opportunity in their own right. To make each pen compatible with all insulins on the market. To produce better/more solid/more stylish/more advanced/more [insert your own wish here] delivery devices to build relationships with insulin users. After all these are things we are using day in, day out.

So come on Big Pharma, how about a little consistency in insulin cartridge design. Then patients could match the best insulin for them with the injection pen that best suits their needs. Not too much to ask, surely?

The carb counting black hole

A few weeks ago I wrote an open letter to Diabetes UK raising concerns about the advice given to diabetics when prescribed insulin. There are something like 6,000 newly diagnosed type 1 diabetics every year in the UK. If you add the number of type 2 diabetics put on insulin the figure would rise substantially. I'm not 100% sure when DSNs stopped giving carb-counting advice as standard in the UK, but at a guess it would be 10 years ago. If only half the newly diagnosed T1s are affected that's still 30,000 people being given insulin doses to take every day and no information to manage them effectively.

I am so outraged at the current situation that I copied the letter to my MP, the Minister of State for Health (with responsibility for long-term conditions) and NICE (the National Institute for Clinical Excellence). I'm pleased to say that I have now had responses from everyone. The content of some of those responses saddens me greatly.

The first reply I had was from my MP, who said she had written to the Department of Health and would let me know when she received a response. So far so good.

10 days later I had a reply directly from a Department of Health 'customer service centre' minion. The basic thrust of the letter was that the value of patient education was recognised and that luckily they have already put guidelines in place that make it all fine. DAFNE... local NHS... local PCT... allocation of budget... maximum benefit of local patients...

The reply from NICE went into detail about how carefully they sort out and their guidelines. Guidelines which, in the case of T1 diabetes in the UK, are not up for review until 2013.

And here's what is depressing about these responses. The NICE guidelines themselves are not that bad. But they don't actually say anything. They only cover broad principles, and it would be foolish to suggest that they could do anything else. If you have been told (by your trained DSN and/or dietician) that you can take your fixed dose and then eat whatever you like, whenever you like as long as you wear odd socks, this advice meets NICE guidelines. If your local PCT has decided that this advice constitutes a 'structured education programme' anything goes.

What the NICE guidelines do say is that proper education for T1s is crucial. They state that everyone should have access to a DAFNE course, or equivalent. They make the point that typically, a properly educated carb-counting diabetic reduces HbA1c by 0.9-1.1%. This correlates to something like a 30-40% reduction in development of diabetic complications. Even at DAFNE's fairly hefty £545 per person/per course pricetag it is still expected that the reduction in complications (and their attendant cost) will put PCTs that run the course in profit. Some PCTs however are taking a rather shorter view of things. Some patients are paying the cost.

By far and away the most encouraging, proactive and positive response I had was from Diabetes UK. Zoe Harrison, a DUK clinical advisor and DSN, took the trouble of telephoning to talk things through with me. She agreed with me that there is a black hole in diabetes education in the UK. She and Diabetes UK recognise that thousands of diabetics are being badly let down by their clinics. Not taught to carb count. Not taught the relationship between carbs on the plate and units of insulin injected (even when those doses are fixed).

DUK have added a comment to the earlier post which talks about patient education materials which they have developed and successfully trialled, and other materials being developed to educate the Healthcare Professionals themselves. Budgets permitting...

Speaking of budgets, it's a sobering thought that just one trip to A&E by a diabetic who gets into hypoglycaemic trouble because they have never been taught to count, measure or monitor their carbs costs the NHS £88 £1,034. The cost to the NHS of three afternoons of training in a local Diabetes Clinic? £66.

I sincerely hope DUK's efforts pay off. Money is found. Diabetes clinics start telling people what they did about carbs 20 years ago. The alternative? Here are some anonymised experiences under the current guidelines:

"Well you will not believe it but if you are not taught the basics of carb counting then guess what, the advice is zero, zilch, nada, nuffink" ('A' type 1)

"I was diagnosed as T1 6 years ago. The basic introduction I was given was just that. Basic. I was instructed in MDI during one very traumatic diagnosis day.We touched on carb counting and DAFNE, but only to say that they existed and that I might one day be taught." ('M' type 1)

"I was told what dose to take and sent on my way, I had to report what my pre-lunch figures were on the phone to the nurse every day for 10 days and she kept on telling me to increase the morning dose by 2u. What I didn't realise, was that I was unwittingly reporting the pre-lunch figures which were high as a result of over-treating the regular 11.30 am hypo. After some months I was fed up with the swinging BGs, regular hypos etc and weight gain that came from heeding the dietitian's advice to eat starchy carbs with every meal. So I got online and met a group of people who helped me. I fought tooth and nail to get onto MDI which I did. I asked the DSN (yes, I've seen a real one twice) about Carb counting and she said "We don't offer that service" ('PE' LADA)

"I don't get this carb counting malarky, I have asked my DSN but she says, 'It's complicated and we'll look at it in the future.' In fact I don't even know what carbs are..." ('P' type1)

"...spoken as one who has been refused carb counting education and was put onto 4 units novorapid with evening meal" (V type 2)

"A basic introduction would suffice, but if DAFNE is available, take it as it gives you a much better understanding of all aspects of the condition. Personally it turned my diabetes around." ('NR' type 1)

"My HBA1C about 7 months ago was 9.2, I started carb counting in September 2010 and my HBA1C in October was 8.3. Yesterday my HBA1C was 7.8!! really pleased with that, especially as I've not had many hypos to give a better 'false HBA1C'.

I'm not after any pats on the back but I do feel annoyed that I have had Type 1 Diabetes for 14 years before anyone had even told me about carb counting!! It makes me wonder how many other type 1's are out there in the same position?" ('P' type 1)

If you are interested, you can read the original letter to Diabetes UK here: Not counting, the cost.

Watching 'Bucket List' on No D Day

Well known diabetic ninja George Simmons (@ninjabetic) has declared today No D Day. Not that we get a day off from 'it' but an encouragement for blogs like ours to write about something else for a change. Something unrelated to the condition we wrestle with every day. In fact I didn't think I'd get round to posting anything today. But here we are.

I love watching films.

Right now, I find myself sitting tapping away while half-watching the film 'Bucket List' quite by chance. Something I recorded a while ago and hadn't got round to. I didn't choose it with any real thought, but somehow there's something very fitting about it given today's theme.

For those that don't know, it's a film that stars Jack Nicholson and Morgan Freeman as cancer patients thrown together and both given very little time to live. They embark on an adventure, attempting to tick off a 'to do' list before they die. So far it's about as silly as you'd expect from that summary (they are currently watching the sun set over majestic pyramids). There is though, something quite No D Day about the 'sieze the day' and 'you only have one life, make it count' themes they are subtly weaving in (with a trowel).

It's all too easy to get swept along in the chaos of daily life and miss the little moments of beauty. It's all too easy to feel squashed under the everyday and to forget to make space for the extraordinary.

Life moves pretty fast. If you don't stop to look around once in a while...

Oh no hang on, that's another movie.

Advice for new diabetics in one sentence

A few days ago Tim on Shoot up or Put Up posted a thread which asked, 'If you were presented with a newly diagnosed diabetic and had to give them your advice in one sentence, what would it be?'.

It was an interesting question to be asked. Diabetes can feel very complex and difficult to understand at times. In all the months, weeks and years since diagnosis I don't think I've ever got to the point of feeling I really understand it completely. There's always something new to learn. A new explanation for those confusing 'out of the blue' results. A new approach. Another lightbulb moment. So to try to distil everything you've picked up into one handy phrase is quite tricky.

There were some interesting and inspiring responses. Things about living life to the full. Being able to take control of the condition. Never letting it stop you from doing anything. Mine, by contrast seems rather dull, but it contains 5 little nuggets that I'm very glad I was told, or really wish I had been told at the beginning of my diabetic life:

Sometimes it won’t feel like it but this is something you can control - just count carbs, test lots, carry sweets and keep asking questions.

For starters, I know that sometimes however hard I try, my control seems to go all over the place. It's no fun battling relentless highs, persistent lows or perhaps worse, the zig-zag rollercoaster of overcorrection from one to the other. Aside from the physical grottiness of it, there is the emotional upheaval and the dark looming cloud of complications to add to the fun.

But...

It might be hard work, it takes a lot of effort, a little willpower and just a smattering of gut-instinct but diabetes is something you can control. Well most of the time anyway. As a type 1 it is a matter of matching the insulin I take with carefully counted (or more usually wildly guestimated) carbohydrates. A little systematic testing after meals can help to identify different and/or unexpected absorption patterns of different foods, pizza... Weetabix... you know the sort of thing. Then I have to decide whether I'll just avoid those choices entirely or work ways around the problem with timing/dose-adjustment. More testing helps me understand the effects of exercise on my blood glucose levels and combat those with altered doses and/or fast-acting carbohydrate for the rest of the day.

Writing everything down, not just BG (blood glucose) levels, but insulin doses, carbohydrate eaten at meals, exercise etc has helped me spot patterns this year that I'd struggled with for years.

If you have not been offered carb counting yet and you are injecting insulin I would urge you to ask your team about it. If for any reason it is not available in your area (and I'm not sure how this can be the case!) the online BDEC course might help. To be honest, even if you are type 2 and not on insulin, it seems to me that carb counting and using a meter to see what happens when you eat different amounts (and different types) of carbohydrate can only help you see how your body reacts and tweak your diet accordingly to aim for the challenging target BG levels we are set.

One of the most significant changes for me this year though has been to compare notes with other diabetics. I've never sought out the voluntary-group-tea-and-biscuits(!) sort of arrangements, but there are several thriving online forums (including one supported by Diabetes UK) where you can share experiences, rant, ask questions and generally converse with other people who are facing the same challenges as you every day. A trouble shared and all that.

Life with diabetes can feel hard at times, or impossible, or unfair. But all we can do is just keep on digging in and working to get the best control we can one day at a time.

I wonder what your advice to the newly diagnosed would be?