Monday, 31 July 2017

Couldn't Get it Right

This is difficult. I am well aware that every job is a good deal harder and more complex than it looks, and that it is the easiest thing in the world to criticise, so I offer these thoughts as, I hope, due praise, together with suggestions and observations as to how things could perhaps be differently expressed. 

A routine hospital clinic review has left me with a 1976 earworm from my diabetes playlist which expresses perfectly my thoughts: Couldn't Get it Right by the Climax Blues Band.

Today was my second clinic review since I returned to hospital care last year. My first review, back in November, left a lot to be desired, and I wrote about it at the time – here.

Today's visit went better in many respects. For a start, the administration was exemplary and the waiting time minimal. I received a courteous reminder phone call, at 7:30pm, three days before the appointment, with the caller apologetic for disturbing me but explaining that missed appointments are common and costly. Fair enough.

Checking in at the hospital was on a touchscreen and I had been sitting less than a minute when I was called for weighing, blood test, blood pressure and “taking the piss”. Another minute's sitting down and I was called in, about a minute before the appointment time.

At my clinic we do not have designated consultants and DSNs, so it appears to be pot luck whom we get to see. The woman I saw greeted me, gave her name and proceeded to give me more time and attention than I have ever had before. She was thorough and attentive, and my take-home message in factual terms was an HbA1c of 6.4. So I should be celebrating.

But I was left feeling, well, mildly amused and even slightly angry, largely because of some rather careless language and an unnecessarily stern tone on the part of the consultant.

She asked to see my meter in a rather brusque tone, and seemed surprised and mildly disapproving when I proffered my FreeStyle Libre, explaining that this was where the vast majority of my data could be found. She took it from me in a manner reminiscent of a teacher confiscating a mobile, then fumbled through the display in a manner reminiscent of an aged aunt with a smartphone. She was clearly less than familiar with a device which has in recent years been widely recognised as a quantum leap in blood glucose monitoring, an impression strengthened by her asking how long I wear the sensor for (it is well known that the sensors last precisely 14 days). I sensed suspicion rather than interest.

She was commendably thorough in her questioning, albeit a little bureaucratic and interrogatory in manner. I was particularly amused by one choice of question: “What other medical conditions do you have?” “None!” Her raised eyebrow suggested disbelief, and surely a better phrasing would be “Do you have any other conditions?” Words are powerful and subtle things, and the phrasing of a question should be thought through. Especially if it's a routine question, presumably used at every such appointment. I felt guilty for being so well.

Scrolling through my data, she appeared to be looking for lows, and enquired rather accusingly “what was wrong here?” on seeing a solitary “LO”. I explained that nothing was wrong, pointing out that it was at 5:30 pm on a day when I had been working hard in the garden, that it was preceded (on the Libre) by a 4.9 with a down arrow and followed, 30 minutes later, by an 8.4 with an up arrow, indicating that I had anticipated and acted upon the “LO”. Her manner suggested she was unconvinced.

Then came the punchline: my HbA1c, she said, was “too good” at 46 (6.4). It was at a level where I was at increased risk of hypos (self-evident in a way?), and she asked if I suffered from hypos. Yes, I do, I replied, but I am normally able to anticipate them and deal with them, not least because of the Libre. Fair enough, she said, but if it went any lower "we would need to lower your insulin dose”. Bad phrasing again. I'm not a child – it is I who would modify the dose.

By this point, I was starting to sense some rather rigid thinking: “lowering my dose” suggests a constant dose, unadjusted for meal content, portion size, activity level, temperature etc. I vary it according to what I'm eating and doing. I don't have a "dose". It's not medication.

To finish with, she said she thought I didn't need a DAFNE course. I was clearly doing very well without one. I told her that I've never been taught carb counting, I just guesstimate, and she replied that I must be very good at it. So again, I am being penalised for doing too well.

So there you go. A pleasing HbA1c result, great to hear as I approach my 20th diaversary and 60th birthday, but somehow it seems that they're never satisfied. 

To paraphrase Abba, “I feel like I lose when I win”

3 comments:

  1. Dear Adrian,

    What a wonderful blog - thank you ever so much. I'm really sorry to hear about your experiences. I had similar issues of consternation from our DSNs when I opted to use a CGM five years ago.

    CGMs are such a genuine game changer in diabetes self-management. I've been surprised how long this has taken to get off the ground in the UK, and how little CGMs feature in our national diabetes conferences compared to the international arena.

    An HbA1c of 46 is fantastic. The NICE T1DM guidelines of course recommend under 48 (as long as hypos don't become a problem):

    1.6.6 Support adults with type 1 diabetes to aim for a target HbA1c level of 48 mmol/mol (6.5%) or lower, to minimise the risk of long‑term vascular complications. [new 2015]

    A CGM with an alarm as a safety feature, particularly whilst asleep (so either Dexcom or Medtronic at the moment) is invaluable to achieve this.

    All patients should also be offered structured education, soon after diagnosis:

    1.3.1 Offer all adults with type 1 diabetes a structured education programme of proven benefit, for example the DAFNE (dose-adjustment for normal eating) programme. Offer this programme 6–12 months after diagnosis. [new 2015]

    In my case we had a daft rule in my hospital that you couldn't attend the DAFNE course for the first year after diagnosis. And yet good control in the first year is associated with much better outcomes later on ...

    I'm a medical doctor and have considerable experience of looking after sick diabetic patients, but didn't appreciate the nuances of the circadian insulin sensitivity, or how to allow for exercise etc. I did the excellent Bournemouth online course instead.

    And books like 'Think like a Pancreas' and the recent 'Bright Spots and Landmines' are both excellent.

    A very Happy Birthday to you for you forthcoming 60th :)

    Very best wishes,

    Ian

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    1. Thank you very much for this thorough and positive feedback.
      As I said, I don't want to sound critical, but I do feel as if there is a lack of flexible thinking here.

      Thanks for the online course and book recommendations, and your kind good wishes.

      Adrian

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  2. It really is deflating when we have clinics like this, where we are made to feel like naughty children for doing our best. Sadly, they are still too common. I really wish that before we unleash these consultants on patients that they have to pass exams where people with diabetes are the examiners. I suspect we might create an Endo shortage 😉

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