Posted by on Friday 17 September 2010

Not counting - the cost. An open letter to Diabetes UK.

Dear Diabetes UK

I was diagnosed with type 1 Diabetes in 1991 and joined the then British Diabetic Association almost immediately. Over the years I have come to value the support, research-funding, campaigning and much of the information that the organisation provides. However I am writing this letter because I feel there is a significant and quite dangerous problem with the advice being given to newly diagnosed type 1 and newly insulin-using type 2 diabetics in the UK. I am appealing to Diabetes UK to work with the NHS and healthcare professionals to implement new guidelines which provide essential information to new insulin users.

The problem is this: People are being prescribed basal-bolus insulin regimes without sufficient information about carbohydrate counting.

The problem does not appear to be universal. Some HCPs still do things the 'old way' and provide information about measuring the quantity of carbohydrate to match insulin doses but in a few weeks' research I have come across dozens of people, diagnosed over the last 10 or 15 years who were told little or nothing about the relationship between carbohydrate and insulin when they started a basal-bolus regime.

Some patients have muddled through, working things out for themselves, others have sought help and advice from peers or online forums. Even more worryingly, some patients report that they have asked their clinic or surgery for more detailed information only to be told that, "We don't offer carb counting here...".

This is insane. This is quite frankly, not good enough.

People are being instructed on what doses of insulin to take, and only being told to eat a diet which is low in fat, high in fibre and contains 'some' starchy carbohydrate at every meal.

When you inject a bolus dose of rapid-acting insulin the clock begins to tick. If you have not eaten enough carbohydrate within something like 30-60 minutes then your blood glucose level will begin to fall. If your level was within guidelines before the meal then the risk of hypoglycaemia becomes almost a certainty. On the other hand, of course, if your meal contains too much carbohydrate then your blood glucose level will rise steeply above and beyond the recommended limits putting you at greater risk of developing diabetic complications.

However, and this is the nub of the problem, 'not enough' and 'too much' become meaningless if the diabetic has never been instructed to measure the amount of carbohydrate they are eating. The problems are all too real, and the solution all too simple.

Every diabetic put on basal-bolus MDI (multiple daily injections) therapy must be given instruction on estimating, measuring and monitoring the amount of carbohydrate in their diet.

When I was diagnosed 20 odd years ago this was the case. I was introduced to a simplified 'exchanges' system, where fixed doses of insulin were matched with specified numbers of 10g 'exchanges' of carbohydrate at every meal. Even with that basic framework in place retaining good diabetic control is far from easy. Without, it is all but impossible. Consider this example:

Mr X, a newly diagnosed type 1 diabetic is told to administer 5 units of rapid-acting insulin to cover his evening meal and to eat low fat, high fibre diet which includes starchy carbohydrate. On Monday he has gammon, vegetables and new potatoes. On Tuesday he has soup and a wholewheat roll. Wednesday's meal is a wholewheat pasta bake. His meals, while in line with his dietary guidelines, contain approximately 50g, 35g and 70g of carbohydrate respectively, and yet he takes the same 5 units of insulin each time. One evening he is fine, another he goes hypo, another he ends up high. In 6 weeks he sees his DSN (diabetes specialist nurse) who tells him that his HbA1c is worryingly high and that he is having too many hypos. If his DSN looks at his blood glucose diary there will be a scattered pattern of highs and lows because, though the insulin doses are fixed, the carbs being eaten vary significantly and are not being measured or monitored. The amount of carbohydrate Mr X needs to match his fixed doses may be different to Mr Y. It may change over time, or if Mr X is more or less active than usual. But unless he is monitoring what he eats, he and his DSN will have no information on which to base informed changes to his regimen.

Some diabetics for whom 'MDI has failed' are put on insulin pump therapy. At which point they are automatically given instruction on carbohydrate counting, and rightly so. For many this is a lightbulb moment. But in all honesty there is little real difference in a 5 unit bolus given by pump and another by injection. Both will require a measured response in terms of carbohydrate eaten to avoid hypo- or hyperglycaemia.

I have no idea why it was thought better to give people less information to help them manage their diabetes. If you go back 15 years or so it seems everyone on insulin was taught the importance of counting carbs. When I was told by my own DSN that "we don't really do exchanges any more" I wondered what had replaced it. It horrifies me to think that what replaced a simple understandable framework was, in some cases, nothing. This can only have lead to poorer control, worsening HbA1c results and, by extension, more hospitalisations due to hypoglycaemia and a higher likelihood of patients developing costly (in all senses of the word) diabetic complications.

To advise people to take insulin without educating them about measuring the carbohydrate they need to eat in response is madness bordering on the negligent.

I urge Diabetes UK to work with the NHS and the government to ensure that every diabetic treated with insulin is given a simple framework of education, perhaps as little as a 10 minute consultation, that will help them understand the fundamental relationship between insulin doses, grams of carbohydrate and blood glucose levels.

Yours sincerely
Mike K

cc Dawn Primarolo MP Bristol South; Paul Burstow MP Minister of State for Care Services (inc Diabetes); The Editor, Balance Magazine

Update: If you reading this post has made you interested in carb counting yourself and your care team do not offer it, you might want to look at the Bournemouth (BDEC) online carb-counting course.

Update: The carb counting black hole


  1. Bravo, Mike. Something that really needs saying, and said well :)

  2. Well said Mike! Agree 100% and wish and wish that someone had sat me down for an hour or more to explain how counting carbs makes things more manageable all round.

    Here's to carbs.... 【ツ】

  3. Hi Mike,

    Great post, and you are right. Insulin without carbohydrate information is scary.

    It's been over 30 years since my diagnosis, since then I've gotten some carb counting training. Although, as you know, it's all very "trial and error".

    I don't know what the standard is in my area, but I believe that most people diagnosed with type 1 are given some basic carbohydrate information.

    I hope that your efforts are successful, as it is, again, scary to think about insulin use with no real carbohydrate counting info.

    It should be said too, that even with training, carbohydrate counting in real life is pretty hard to do right most of the time. Or maybe it's just me? :-)

  4. Thanks Scott. Nope you're right. It's hard enough even when you've been given a little training. Goodness knows what it must be like if it hasn't been mentioned at all :O

    Someone has even said to me that perhaps I should have mentioned that administering insulin with no idea of the carb implications could well be lethal. Now that *is* a scary thought.

  5. Thanks for this. 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. The rest has been trial, error and a lot of internet research.

    I'm an educated guy, with the where with all to become my own expert. I frightens me to even imagine what happens to those that aren't so self-motived. Your call to arms has my full support.

  6. Oh, I'm with you on this one. I've been carb counting of sorts since diagnosis 33 years ago, but when I went on a Carb counting course as a pre-requisite to getting a pump, most of the other people there where there because they were having problems, and so carb counting might help. Most of them didnt really know how to count carbs - so it wasnt surprising that they were having control problems!
    Here, it seems to be: if you're having problems, try carb counting, if that isnt enough, we'll give you a pump if you want one. Surely it makes sense to prevent the problems happening in the first place!


  7. Hi Mike,

    Thanks for the letter - I understand that you've talked to one of our Clinical Advisors over the phone about this, but thought we should post our response here too for the record. Zoe Harrison, who you spoke to, kindly put this response together:

    "Evidence continues to emerge about the role of counting carbohydrate in conjunction with adjusting insulin. For many people with Type 1 diabetes it is an effective way of managing the condition which once mastered, will lead to better blood glucose control and greater flexibility and freedom of lifestyle.

    Diabetes UK is very aware of the disparity of the provision of structured education, and more specifically around carbohydrate awareness and counting. Although there are some areas of the UK that provide a consistently high quality service including education in this subject some areas remain lacking. A survey carried out by Diabetes UK in 2005 identified that half of registered dietitians with a special interest in diabetes felt they needed more training so as to advise patients with Type 1 diabetes about carbohydrate counting and insulin dose adjustment. Further focus work carried out in 2009 highlighted that both nurses and dietitians see a definite need for a resource for healthcare professionals to learn more/develop their skill in this area.

    In response, the Policy and Care Improvement team has put forward plans to the Board to pilot an education programme for healthcare professionals on the subject of carbohydrate counting for 2011.

    In addition there is overwhelming interest from Diabetes UK supporters about how to estimate carbohydrate values of foods. In 2007/2008 Diabetes UK undertook a project, with the support of a working group, to produce a book called Carbs Count. The final product was a 125 page book with an additional pocket sized carbohydrate reference list. A pilot production of 1000 copies of the book were printed, distributed and evaluated. Around 90% found the book helpful and that the book had given them more confidence counting carbohydrate and insulin dose adjustment.

    The Policy and Care Improvement team has put forward plans to the Board to publish further copies of the book for 2011.

    In the meantime people with diabetes can access further information about carbohydrate counting through the website"

    Many thanks

    Joe Freeman
    Digital Communities Manager
    Diabetes UK

  8. Thanks Joe (and Zoe). It was great to chat through this issue with Zoe last week. If I get a chance I'll post an update tonight since my MP, the Dept of Health and NICE have also been in touch.

  9. It's good that Diabetes UK have acknowledged this issue. However, what about T2s on insulin? I was diagnosed T2 in May 2003, solely based on my age. I was not overweight, quite the reverse and had lost nearly a stone in a matter of 3 weeks. After 3 weeks on tablets and BGs in the 30s I was finally given insulin and taken off all oral meds. I was told I could not do DAFNE because I am T2! So does carb counting not work if you've been given the wrong label? As it happens I have taught myself with the aid of the BDEC online course and have kept my Hba1c under 6 for the past 6 and a half years. Would others be so motivated?

  10. Absolutely agree Mike, to not carb count makes no sense verging on ridiculous. They presumably think it's too complicated for people to handle? Even if your not on MDI, you still need to understand about carb counting to keep your levels stable to match the fixed dose of insulin your'e on. Many children are started on fixed twice daily doses and parents are just told to make sure 'some' carbs are provided at each meal. Far too vague!!