Normal

The aim of every clinician is to make each patient with a long term condition as "normal" as possible. The definition of "normal" depends on the clinician, but it should be as close to the patient's definition of "normal" as possible. If the patient feels they are living a "normal" life then the clinician has succeeded.

When I was first diagnosed with type 1 diabetes, in 1976, I had a glass syringe and reusable needles stored in a plastic pot filled with ethanol, and two vials of bovine insulin. The routine was quite involved. Take out the syringe, push the plunger back and forth a few times to expel the alcohol, then attach the needle, pull the plunger back to the dose and, holding the syringe and vial upright, push the needle into the rubber stopper of the vial, and pump the dose equivalent of air into the vial; then draw out insulin, remove the needle, tap the syringe to get any bubble to rise to the needle end and gently push the plunger to expel the bubbles. Finally inject the insulin. It is not normal to do this in a restaurant, at school, or at a friend's house. This is not normal, so injections were kept to a minimum: twice a day at home. When insulin pens were introduced it became possible to be discreet about injections. It was possible to inject under the table at a restaurant, or nip to the toilet and inject. You could act "normal" while still doing something unusual - injecting in public.

Over my 39 year of type 1 diabetes I have been as "normal" as I can. I don't use my diabetes as an excuse. I try to be like my relatives, my friends and the people I work with, by doing the things they do and living like them. Indeed, it is not unusual for a friend to say "I didn't know you were diabetic". No, like you, I am normal.

The problem comes when clinicians try to turn normal people into patients. Recently, when talking to a GP at my local Clinical Commissioning Group about their new design for diabetes services I asked about the diabetes annual review. The GP told me that in his opinion a review annually was not often enough and he would like to see his diabetics four times a year. Four times a year: that's not normal, that would be changing me into a dependent patient. I don't want to be a patient, I want to be normal.

For 39 years I have collected my prescriptions four times a year and although that is enough of a chore, I have learned to put up with it because I know that without my insulin I won't be conscious for long. However, I have just found out that my GP will only issue repeat prescriptions monthly. That means twelve visits to the pharmacy every year. To a pharmacy that has opening times the same as most people's work time, and closes when most people have lunch. That is, the only time a normal person can collect a prescription is during work time. A normal person will have to take time off work to collect the prescription and this identifies them as not being "normal".

In the last 20 years or so, I have been able to be "normal" while still having diabetes. Now, it appears, I have not choice: I have to be a patient. I won't change without a fight. I am quite happy for my GP to send me four diabetic clinic appointments every year: that gives me a choice of which one I want to attend. And if my GP wants me to collect a prescription every month. Well, fine, instead of requesting my prescription electronically, I will collect the script from the surgery. Yes I do know that I will get in the way of the smooth flow of patients through reception, but it was you who decided to make me collect my prescription from reception every month.

And then there is the issue of the drugs I take. Half of them I take on faith. I take these drugs because my GP tells me to take them, but I know from the occasions that I have forgotten to take them that these drugs have no discernable effects on me. I have a big incentive to take insulin because if I miss an injection I start to feel ill within an hour or two. But I have no incentive to take the statins and the two hypertension drugs other than to make my GP happy*. Yet I will have to make monthly visits to the pharmacy to get these "on faith" drugs, drugs that I have no incentive to take. If I run out of statins, but I still have insulin in the fridge, why should I make an additional trip to the pharmacy? After all, since the statins and the hypertension drugs have no noticeable effects on me, if I don't take them I will still feel "normal".

[* I am diabetic, my GP gets a QOF payment based on my blood pressure and cholesterol blood tests. Although I have no incentive to take statins and hypertension drugs, there is a financial incentive for my GP to make sure that I do. This game of incentives may get interesting.]