I attended the consumer outreach day of the ADS-ADEA 2014 scientific conference last week and it was during the session on hypos that I realised that the intersection of scientific “evidence”, clinical expertise and the lived experience of diabetes is a total train wreck.
ADS-ADEA 2014 are to be commended for dipping their toes into the murky waters of consumer involvement in scientific sessions, bans on pharmaceutical companies (who are the major source of sponsorship for such conferences) and affordable and meaningful involvement of people with diabetes in conferences that talk about rather than with them. Most countries fail to accommodate consumers at all. There is much to be done to integrate consumers into these conferences and we’re not there yet, but credit where it is due, the 2014 ADS-ADEA was a really encouraging start.
So back to the train wreck….
The first part of the morning session on hypos was a presentation on the effects of hypos on the brain. There was good data from studies to show that severe hypos are neurotoxic and particularly so to the developing brain. The most injurious thing to the brain of somebody under 6 is severe hypos combined with hyperglyceamia. Hmmmm, this was extremely depressing listening for me who was diagnosed at the age of 16 months, but the science was clear. During question time, it was asked how you would talk about this with your patients and the response was “With great caution, these effects (on the brains of those who’ve suffered severe hypos and hypers) aren’t obvious in everyday life/interactions.” It’s too late for me, my brain might have been injured but I guess I’ve been able to hide it pretty well. I did, however, feel for the parents in the room who are faced with the daily battle of achieving optimal a1cs and avoiding hypos. I honestly believe I would make the decision to run my diabetic child’s sugars a little higher in order to avoid hypoglyceamia after listening to that evidence-based presentation.
The next presentation was a “hypo update” presented by a paediatric endo. Dr Tim Jones’s main point was that fear of hypoglyceamia is a problem that patients have. He stated that hypoglyceamia was over-emphasised at diagnosis and asserted that children pick up on the fear of hypoglyaemia from their parents. These were assertions made with confidence but if there was any evidence to support this, I certainly must have missed it. When Dr Jones made the statement that “the solution to hypoglyceamia is patient education”, I was grateful to the ever gracious and patient-centric Professor Peter Coleman from RMH who asked that this statement be explained, forcing Dr Jones to concede he should have said it was his opinion that patient education was the solution.
By now one wondered whether one should be throwing caution to the wind and disregard hypos as a problem or whether, based on the first presentation consider that every hypo was costing us brain cells.
I’d like to suggest that some doctors might like a little education about the person with diabetes’ experiences of hypos. Perhaps they’d like to live with the fear that their child won’t wake up in the morning or they’d like to wake up in a cold sweat and not know where they are or become nonsensical during an important meeting or just have the shakes and an insatiable urge to eat everything in your refrigerator at 1am. Those of us with type 1 have all got our hypo stories, heck some of them we laugh over, like a friend telling her kindy teacher to f*&% off during a hypo but for others, like the Meads-Barlow family a hypo took their daughter’s life and it’s no laughing matter and our fear is not irrational. At best hypos are an inconvenience, but they can also be debilitating, frightening and even life threatening.
So don’t tell me that my fear of hypos is irrational. It’s not, it’s a real fear and frankly, I think that the vast majority of us do an absolutely amazing job putting up with hypos in order to achieve “good” hba1cs. Sure things have gotten a lot easier since I went on the pump, the ability to reduce my basal in the early hours of the morning to prevent the 1am hypos has been a God-send but until we get the closed loop, hypos remain one of the bug-bears of diabetes.
I’d have liked the clinical symposium to have offered actual data on interventions to reduce the frequency and severity of hypos, for example, does CGM help and in what circumstances? What about pumps? What about this patient education that was mentioned? What form does it take and have the effects of different educational interventions been measured?
I’m pretty sure the answer to the above questions is “we don’t really know”. In any case the experts didn’t seem to know when they were coming up with the Clinical Guidelines for Type 1 in adults . There was a particularly flippant comment made by one of the presenters that problems were encountered when “we” (meaning the medical profession) tried to improve control with Actrapid and Protaphane and we didn’t really know what we were doing. Well why should i, a sufferer of this previous “stumbling around in the dark” trust that you do know what you’re doing now? Those of us who remember the days of Actrapid and Protaphane remember the same judgement and feelings of failure when trying to achieve ideal hba1cs with these inadequate tools, need some convincing that things have really changed. Sure, there are new insulins and new delivery methods but at the same time the targets keep being reduced.
The positive thing that I took away from this session was that although I felt an enormous divide between medical research, clinical opinion and patient experience of diabetes, it was a giant leap forward that I was able to see that by attending this conference. It is my hope that as more patients participate in the healthcare debate and health care providers listen to people with diabetes (outside of the context of a consultation) and vice versa then this gap will be narrowed. I suspect that bringing science, clinical expertise and the lived experience of diabetes together is the most efficient and effective way to bring about improvements in the quality of life of people with diabetes.
I am interested in hearing your thoughts about hypos, do you believe they are over-emphasised? Do you think, that generally, people with diabetes have an irrational or even too great a fear of hypos? What about the divide between science and experiences, any ideas on how to bridge the gap?Tweet