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