Changing the conversation at your next diabetes appointment
JDRF often hears from people who are frustrated with the usual conversation they have when they go to a diabetes care appointment. Whether it’s because the consultant doesn’t seem to listen, or the nurse just says the same thing about how everything looks okay, or the dietitian says the same thing about eating less of this or more of that, we can think of a few things you can try to change the conversation.
Our suggestions below may sound like a lot of hard work for no guaranteed result, but bear this in mind:
To get a different response from your diabetes care team, you might have to try something radical!
By ‘radical’, we’re not talking about something that’ll get you escorted out of the clinic or trending on Twitter. We mean:
- setting goals
- defining the agenda, and
- checking your basal insulin.
Whether or not your clinic downloads your meter or pump when you go, nothing in the device record can capture the detail of this story: ‘Last Saturday, I went for a walk after lunch, felt symptoms of a mild hypo but didn’t test, had 30 grams of carbs and then a glucose level of 10.9 mmol/L at 4 pm.’
All the device can say is ‘10.9 mmol/L at 4 pm on Saturday.’
Based on only that data, your consultant would probably say you didn’t take enough insulin at lunch – and he would be wrong!
Keeping detailed old-fashioned, paper-and-pen written records for two weeks or so prior to a diabetes clinic appointment can give you and your diabetes team a lot more to talk about, and a good amount of data to show what your control is really like. This is especially important if you believe you would benefit from a pump, but your diabetes team don’t seem to see why.
Download some free log sheet templates from Gary Scheiner’s clinic. If you’re on a pump, try using the Pump User Log Sheets; if you’re on injections, check out the Detailed Log Sheets.
You can print out a few copies to cover two weeks.
The log sheets are not intended for you to do a test every hour. The idea is for you to write the result in the box next to the hour when you do a test. For example, if you are testing at 7 am, you write the result in the box for 7-8 am and you could underline the seven in the ‘7-8’. If you test again at 11.30 am, you write the result in the box for 11 am and put a little note in the box (or in the notes area below all the boxes) to indicate it was 11.30, for example ‘:30’
Consider drawing a circle or using a blue coloured highlighter pen to draw attention to levels below 4.4 mmol/L. If you have situations where you have a hypo test result, but you didn’t have any symptoms, maybe draw a circle around them as well as use the blue highlighter. It’s important for the diabetes team to know about hypos you didn’t feel (this is called hypo unawareness).
If you feel hypo and you don’t reckon you can test before you have carbs, at least write an H in the time box (and put some blue highlighter on that H), record the number of carbs you consume, and check your glucose level 15 minutes later. You can pre-measure portions of sweets into plastic food bags labelled with the number of carbs on the outside of each bag when you are not hypo so you have a way of keeping track, or you could get some glucose tablets of 4 g carbs each at the chemist (Dextro Energy is a common brand) and keep track of the number of tabs you eat. Showing that you do not overtreat hypos and then end up high later is important for demonstrating that you understand the effects of carbs on your glucose levels. Or if you know you tend to overtreat, preparing your hypo treatments ahead of time could help you cut down on those ‘rebound’ highs.
If you have high glucose levels that seemed to come from nowhere, mark them – perhaps with an orange highlighter pen so they really pop off the page.
Adding a food diary to your record-keeping, where you write the time, type of food/beverage and amount consumed, can be extremely useful too. A glucose level 13 mmol/L after 50 g carbs and your correctly calculated bolus doesn’t necessarily give enough information for a problem-solving conversation. For example, if your glucose log shows you had a high glucose level after supper two Tuesdays ago, it could be very helpful to see whether you ate pizza or salad followed by fruit for dessert. If you ate pizza, the high glucose might have been from the fat and you could discuss the timing of your mealtime dose, or how much to take in a second top-up dose the next time you have pizza. But if you had a low-fat meal, maybe you just under-counted your carbs and it would help to keep an eye on the portion size the next time you have a bowl of fruit.
If showing all the blue and orange levels on your log sheet gets you no advice at all, the diabetes clinic at your hospital may not have the expertise to help you manage your diabetes and it could be time to consider asking your GP for a referral to a different clinic (we have a list of places we hear good things about).
What do you want to be different about your life with diabetes?
Waiting until the night before your diabetes appointment to think about what you want from it may not give you enough time to think of what to say. Set aside some time at least a week ahead of a clinic visit, or even think about it when you’re in the shower for a few days.
Can you identify some goals you want to share with the consultant or diabetes nurse? These may be things you put on the agenda for discussion, or just things you want your consultant to know are on your mind. For instance, if you want to get fitter or avoid putting on weight, you could put ‘weight management’ on the agenda as an item, and tell your consultant that you are keen to stay in shape. You may wish to ask him for a referral to the dietitian, or tell the consultant what strategies you might use on your own (like eating off the vegetable tray at a party, or increasing the amount of water you drink to avoid mistaking thirst for hunger).
Or maybe you know you’ve not been checking your glucose level as much after meals as you could, and you are afraid your A1C could be higher than your target because you’ve slipped on this. You can decide before you see your consultant that it’s time to put an alarm in your phone for three hours after your usual lunchtime to remind yourself to check. When you tell your consultant that’s what you’re doing, he or she hears that you ‘get it’. The consultant can then talk with you about changes you might make based on your results, rather than nag you to check your glucose level more often (which you already knew anyway).
Defining the agenda
In addition to setting some goals, try putting on the mindset you’d use with a solicitor, accountant, builder or other professional whose expertise you would pay for before you go to clinic. You might create a list of questions or priorities. Write them down in a list in order of importance to you, and print out a couple of copies so you can give one to your consultant and have one for yourself. Try to do this the night before the appointment so the sheets are ready before you have to travel to the hospital.
Get out a pen when you sit down in your consultant’s office. Hand her/him one of the agenda sheets, saying you’ve had a think about what you would like to achieve from the visit and you hope the agenda will guide the discussion. Make notes on what your consultant says with regard to each agenda item. If your consultant uses any words or names you’re not sure of, ask for the spelling. Showing that you are paying close attention may put the consultant into a different frame of mind in speaking with you.
If the consultant recommends a change to your doses, etc, ask a few questions:
- Why do you recommend this change? (if not already explained)
- How will I know if it’s working or not?
- How long should I give it (days? weeks?) before getting in touch if it doesn’t seem to be working?
- Who should I contact if it’s not working?
To get a clear idea of whether the change is working, you can use the written log sheets again for a week or so after making the change. Being able to compare the ‘before’ and ‘after’ data side-by-side could be very useful.
Why should you make notes? Research suggests that neither patients nor healthcare professionals are good at remembering what decisions have and have not been made.
Checking your basal insulin
Lots of people tell us they walked out of clinic with a recommendation to change their basal (background) insulin or carb to insulin ratio, but very few people are instructed on how to check what’s going on with their basal insulin first. But the right basal dose is the foundation of good control for everyone who uses insulin.
Changing your insulin ratios or doses without knowing what your basal is doing can be like putting the cart before the horse – things may even get worse! If you think things aren’t quite right – whether you’re seeing a pattern of highs or lows at the same time of day or your glucose levels are all over the shop – taking the time to check your basal insulin doses a week or so before you go to clinic can make it a lot easier for your diabetes care team to make suggestions that actually help.
Gary Scheiner’s article on checking basal insulin is really helpful for guidance.
- Remember: YOU are in charge of your care. Your consultant and DSN are there to help YOU manage your diabetes
- Keep detailed records 2 weeks prior to clinic, to provide a detailed narrative of the issues you want to discuss
- Set your agenda for the appointment, write it down, and take couple of copies to clinic
- Include in the agenda the changes you have already decided to make
- Make notes on what your consultant says with regard to each agenda item. Showing you are paying close attention can change how they communicate with you
- Consider checking your basal insulin a week or two before a clinic appointment if you feel like your regime might need tweaking