Diabetes does not go away. This is one of its defining characteristics—it is a chronic condition, which means it is managed rather than cured, and the management continues for the duration of the person’s life.
A person who was diagnosed with diabetes ten years ago and has been managing it successfully for ten years is, at the end of those ten years, still a person with diabetes. The diagnosis is not provisional. The condition does not require periodic re-establishment to remain valid. The membership card issued by the national diabetes organisation is not issued to people who think they might have diabetes. It is issued to people who have been diagnosed and whose diagnosis, being permanent, remains in force.
The GP who declined to accept this—who looked at the card, looked at the blood test results, listened to the patient’s account of their self-management, and determined that he could not accept the patient as a diabetes patient without conducting his own tests from the beginning—was not making a medical judgement. He was making a jurisdictional one. The condition was not in doubt. What was in doubt, within the logic he was applying, was whether the condition had been established through the processes his framework required. The evidence that it had been established was in front of him. The evidence did not fit the format his framework specified. The format took precedence over the evidence.
The test he insisted upon was not the most appropriate test for the situation. An HbA1c—the standard measure of blood glucose management over the preceding months—would have confirmed the diagnosis and provided a current picture of how well the condition was being managed. It is the test that diabetes specialists use. It is the test that reflects the reality of how diabetes is lived and managed over time. It was available. The GP did not order it.
He ordered instead the oral glucose tolerance test—the base-level diagnostic tool that is used to establish a diagnosis in people who have not yet been diagnosed. The test requires twelve hours of fasting, the ingestion of a high-glucose solution, and intermittent blood tests over several hours. It is a test designed for people whose diabetes status is unknown. It was being ordered for a person whose diabetes status was documented, established, and not in question.
The patient explained the practical consequence of the test for someone managing the condition the test was supposedly confirming. Twelve hours of fasting followed by a high-glucose load would produce a hypoglycaemic state that made driving unsafe. The clinic was two kilometres away. The recovery from the test and its effects would take approximately a week. These were not complaints about inconvenience. They were accurate descriptions of the physiological consequences of a test that was being ordered not because the information it would produce was needed but because the format required it.
The GP was adamant. The policy required the test. The test would be ordered. The patient did not proceed.
The second GP took blood tests in his surgery. During the tests, the patient fainted. When consciousness returned, the GP tested blood glucose and found a level of 8mmol/L—moderate for a person with diabetes, and within a range that the patient’s own self-management had been navigating for some years. The GP declined to allow the patient to leave until they had consumed extra sweet tea and a sugary biscuit. The patient was not in a position to decline, because the referrals they had come for—to podiatry, to the other services that their diabetic status entitled them to access at reduced cost—were conditional on the GP’s cooperation.
The tea and the biscuit produced a week of illness.
The GP was following standard procedure for a patient presenting with what appeared to be a hypoglycaemic episode. The standard procedure is designed for patients who are not already managing their condition, who do not know their own blood glucose responses, who require intervention to avoid the progression of the episode into something more serious. For the patient who has been self-managing for years, who knows their responses, who had fainted not because their glucose was dangerously low but because the blood test itself had triggered a vasovagal response, the standard procedure was a solution to a problem that did not exist, applied without inquiry into whether the problem existed.
The inquiry was not made. The procedure was applied. The patient ate the biscuit and drank the tea and was ill for a week.
The pattern that emerges from both encounters is not the pattern of negligent doctors. Both doctors were following the policies and procedures of their professional context with the sincerity of practitioners who believed they were providing appropriate care. The first was following state government health policy. The second was following clinical protocol for hypoglycaemic management. Neither was failing to do what the system required of them.
What the system required of them was the application of frameworks designed for the general case to a specific case that the frameworks were not well suited for. The general case is the patient who has not yet established their diagnosis, who does not know their condition well, who requires the full diagnostic workup to establish the baseline from which clinical management will proceed. The specific case is the patient who has been managing their condition for years, who has established knowledge of their own responses, who arrives with documentation, history, and understanding that exceeds what the standard intake process is designed to receive.
The frameworks do not have a category for the expert patient. They have a category for the diagnosed patient, which is different. The diagnosed patient has been through the system’s processes and has emerged with a documented condition that the system can manage. The expert patient has been managing the condition themselves, has developed understanding that may exceed the GP’s familiarity with the condition’s daily reality, and arrives at the clinical encounter with knowledge that the clinical encounter is not structured to receive.
The knowledge asymmetry in clinical encounters is typically assumed to run in one direction. The professional knows the medicine. The patient knows their symptoms. The professional interprets the symptoms through the medical knowledge. The patient provides the raw material. The professional applies the expertise. This is the standard model, and it works reasonably well for acute conditions that the patient has not previously encountered and that the professional has seen many times.
It works less well for chronic conditions that the patient has been managing for years. The patient with a chronic condition has, through the necessity of daily management, developed a form of expertise that is different from the clinician’s expertise but is not inferior to it. They know how their condition behaves in their specific body. They know the patterns of their responses. They know what their blood glucose does in specific circumstances, what interventions produce what effects in their case, what the standard protocols recommend and where their own experience diverges from the standard. This knowledge is not available in the medical literature. It is available only through the sustained experience of living with the condition.
The clinical encounter does not have a mechanism for receiving this knowledge. It has a mechanism for the clinician to provide information and the patient to receive it. The inversion of this—the patient providing information that the clinician receives and integrates—is not the encounter’s default structure, and the default structure is enforced, often without either party explicitly acknowledging it, by the asymmetry of professional authority.
The GP who insists on the diagnostic test, despite the patient’s documented diagnosis and established self-management, is not insisting because he doubts the patient’s intelligence or good faith. He is insisting because the professional framework positions his authority to establish the clinical facts as prior to the patient’s account of them. The patient’s account is data. The professional’s assessment is the conclusion. The conclusion cannot rest on the patient’s account alone, because the account is data and the professional is the one qualified to interpret data. The framework requires the professional to generate their own data rather than rely on the patient’s.
The patient’s ten years of daily self-management is data the framework cannot receive in the format the framework requires.
The consequence of the two encounters is that the patient has neither a GP nor the referrals that would allow them to access the related services their condition entitles them to. The podiatrist, the eye specialist, the other professionals whose contribution to diabetic management is documented and whose services are subsidised for people with a confirmed diagnosis—these are inaccessible without the GP referral, and the GP referral requires the patient to submit to processes that produce genuine clinical harm.
The choice is between submission and self-management without support. Self-management without support is what the patient has been doing. It has been working. The evidence that it has been working is the blood test results the first GP declined to accept.
The system that is supposed to support the management of chronic illness has produced, for this patient, a set of encounters in which the successful management of the illness has been used as evidence that the management does not require support, and the support has been conditional on the patient submitting to processes that undermine the management.
The patient manages their condition well.
The system’s response to this is to require them to demonstrate that they cannot.
The demonstration makes them ill.
The illness confirms the need.
The need does not become support.
The Vorpel Foundation