I have written about corporate accounting controversies and political parties ducking and weaving. I’ve explained complex accounting gymnastics, upset regulators and chased listed companies and caused more than one person to get grumpy when a light was shone on their corner.
I have sought to use Freedom of Information laws to try and track down information and found – as have many other people attempting to wrestle information from the clutches of government using FoI – that things can be made difficult by people who want to hide.
There is one story, however, in which I was able to get a straight answer about using FoI laws in Australia that particularly mattered to me, and one in which the FoI process was particularly useful.
I was well into my late forties, and I was unaware of what detective work went on later to discover that I had what is a rare disorder. I knew nothing other than what my specialists told me during periodic check-ups.
This changed when I requested access to my medical records late in 2018 from the Royal Children’s Hospital using the ability to get access to that material through FoI.
All it cost me to go back into the archival time machine, which occurred at the same time as Australians were wondering whether to opt out of the electronic My Health system, was one hundred dollars that included the application fee and the payment for printing and mailing costs.
The first 19 years of my life information arrived that mid-January in a manila folder in the mail, and I began to go on my personal medical safari.
What did I learn?
It was about six weeks from birth that the condition was discovered after there was a battery of tests undertaken to unravel this medical mystery that covered the full gamut, including immunology and bacteriology.
I had been taken to the hospital by my parents with convulsions that had been occurring over a longer period of time but there was no immediately discernible cause so the medical practitioners had to go through the process of elimination to try and understand the dilemma with which they were presented.
Hypoparathyroidism – essentially the inactivity of or non-existence of parathyroid glands – results in a range of symptoms that include tetany, fatigue, tingling around the face known as paresthesia and a range of other weird and wonderful things if the condition is not treated properly with one of a range of treatments.
Convulsions were one way in which hypoparathyroidism manifested and the medical report on how I slowly recovered from these during hospitalisation as an infant fascinated me.
“Convulsions that occurred during the early part of his hospital stay were controlled with [intravenous] calcium gluconate – as his serum calcium rose, changed to oral calcium gluconate. Also given vitamin D and Pentavite,” the medical report in what is a 300-plus page file that chronicles almost two decades of my existence. “Convulsions became less frequent until they finally ceased, and the patient was discharged on calcium gluconate orally, 1 Gm q.i.d.. vitamin D 1000 daily and Pentavite 12 drips daily.”
This was the beginning of the use of what is called the conventional treatment to treat the disorder that, in my case, has continued to work well. There are alternative treatments that are hormone-based but in my case, ‘if it ain’t broke, don’t touch it’ applies. Why mess with success?
I am different to some others with the condition because there are people who have hypoparathyroidism that might come bundled with another disorder such as a problem with adrenal glands.
Others might discover hypopara is the door prize they receive when they deal with thyroid problems. The parathyroids sit on top of the thyroid gland and as such the removal of a thyroid gland to fix one medical problem can bring the onset of another. There are also people for whom the disorder is familial.
There were also tests for other things, too, in order to rule things out over periods of time given the nature of hypopara but those typically came back with the medical practitioners’ version of ‘nothing to see here’.
My records also provided an audit trail of blood test results that were undertaken once every three months to ensure that there was sufficient ‘control’ as the doctors call it of the levels of calcium in the blood. There are times when things were out of kilter but short letters that said “you will be pleased to hear that your blood tests were again satisfactory” are peppered throughout the records.
The fat manila folder’s contents are a reminder of the care that nephrologists – doctors who specialise in treating kidney problems – took of me during those years when endocrinologists did not have as great an understanding of the impact of calcium in certain disorders.
A flip through the records also enables a person to remember what they felt at a particular time and place. The records underscored the challenges I faced in understanding how to deal with this thing that medical professionals did not understand. It must also be acknowledged that these records also show the toll medical mysteries take on families that are confronted with having to understand something that is rare, different and, at times, isolating.
Records such as these provide a necessary closure and a sense of transparency about the treatment of a life-long disorder.
One look at the Twitter feeds of journalists and politicians showing redacted documents that are the outcome of FoI requests indicates that our laws regulating the release of information may need to be looked at more closely.
The community deserves to have the same level of transparency and sense of closure that I received when my records lobbed into my mailbox that one morning.
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