Medicine, Botany, Faith (and not to mention Magic Potion!)
A little while back I posted about the challenges a family member faced after forgetting to bring their medications when they came to visit us. In that post, I referred to the Electronic Transfer of Prescriptions (eTP) and I’ve now taken a closer look at this system and discovered some useful features, but also significant room for improvement and expansion.
Continue reading “EHRs: Safety vs Privacy & the ETTO Principle”
Last week I was attending one of my (many!) specialist appointments to discuss results from my recent colonoscopy, possible treatment options for my ongoing colitis, and how they would interplay with my immunotherapy treatment. While in the waiting room, I opened up my daily bible reading app (ReadingPlan) and I just happened to be up to 2 Chronicles 21. Verse 15 was rather…err…interesting, but adds weight to my belief that God has a sense of humour!
15 “You yourself will be very ill with a lingering disease of the bowels, until the disease causes your bowels to come out.’”
😳😱😂🤣😂
This prophecy from Elijah was to King Jehoram, and sure enough came to pass. To rub salt into a very painful wound, the chapter finishes with:
20 Jehoram was thirty-two years old when he became king, and he reigned in Jerusalem eight years. He passed away, to no one’s regret, and was buried in the City of David, but not in the tombs of the kings.
“…to no one’s regret…” Ouch!
It’s enough to make me want to bowel down and worship!
I still remember quite vividly the unfolding nightmare that was my melanoma diagnosis in 2013. It was bad news after bad news after bad news. One kick in the teeth after another. First it was “There’s something big on your chest X-ray that shouldn’t be there”. Later that day it was that “it’s also in your abdomen”. A couple of days later it was diagnosed as melanoma. A CT scan early the next week showed it was also in my brain, which ruled me out of pretty much all of the clinical trials of new melanoma treatments. A follow up MRI a few days later showed it was even worse than the CT had suggested which meant stereotactic radiotherapy to the brain mets was no longer an option and I required urgent neurosurgery followed by whole-brain radiotherapy. There was one remaining hope in the form of a targeted therapy which had shown promise, namely dabrafenib, but again I was disappointed to discover that my melanoma didn’t have the mutation that this drug targeted so it wasn’t an option either.
This torrent of bad news was upsetting and frustrating for me and my family, and in amongst trying to wrap my head around each new piece of bad news, I was often left wondering where was God in all this? Did He really care? Why wasn’t He allowing me access to these treatment options? He seemed determined to just let me die, and quickly at that! Don’t get me wrong, there was lots of provision from God in other ways, such as the practical and spiritual support of my family and church, but I was still struggling with these darker questions as well, and wondering what was going on.
Edit 18/5/2018: A follow-up to this post can be found here.
My parents, as they often do, came up to Newcastle and stayed for a few nights last week, and it ended up being a case study in Patient Work.
My mother left all her medications at home. I’m sure she’s not the first, and won’t be the last person to make this kind of skill-based error known as a “lapse”, but it immediately raised some obvious questions and issues that she, and others, had to go about solving, requiring significant amounts of time and mental effort which all contributed to her Patient Workload. Continue reading “Travelling, Medications and Patient Work”
There’s been yet another twist in my earlier story about trip to Sydney for a medical appointment a little while back. I popped into my pharmacist earlier this week to get a script filled and he casually asked me if wanted my final lot of Humira, which was the medication I was driving all over Sydney to try and get because I had run out. As it turned out, I had one more repeat than I had thought, and the pharmacist had filled it expecting me to come back and get it when I needed. This meant there was more Humira sitting in the pharmacy fridge in Newcastle waiting for me the whole time I was going going back and forth across Sydney!
Sigh…
In recent months the “Theatre Cap Challenge” has been picking up steam on Twitter & has had significant coverage on mainstream media as well. In case you’re wondering what all the fuss is about, you can check out my video in this post or check out the twitter feed below.
While it’s been great seeing this initiative gain momentum, it seems that a significant number of people are hitting a hurdle in adopting it because their hospital doesn’t allow reusable cloth caps citing infection control concerns. In Australia, the ACORN standard is usually cited as the reason for not allowing them, though not all hospitals are interpreting the standard in the same way, and the standard itself allows individual hospitals to develop their own policy on cloth caps.
Following my recent “discovery” of the concept of Patient Work, it has reframed the way I view all my interactions with the healthcare system such as doctors visits, taking medication, blood tests and scans and so on. I’ve decided I’m going to start describing and documenting some of these interactions primarily for my own interest, but also in case others find them interesting as well. What follows is an almost textbook example of some of the complexity and unpredictability of Patient Work, and the need for the Patient Work System to be resilient enough to cope with these variations and uncertainties
This was a video my church produced last year to record part of my story, particularly the last few years of it. I hope you “enjoy” it!
As part of my job, I have a monthly safety spot at our departmental M&M meetings. Here is a modified version of one of the presentations discussing the importance of knowing, and using, people’s names. If you would like to download a copy of the slides, you can do so here here.
What’s in a name? from Dr Getafix on Vimeo.
The “names-on-caps” idea came from Rob Hackett and then went viral after Alison Brindle started the hashtag #TheatreCapChallenge.
Following my recent post on Patient Work, I decided to do what i normally do when I want to research something and headed over to Twitter. I did a search using the hashtag #PatientWork and was surprised to discover that at that time (2/3/18) there was a total of only 25 tweets, the earliest one being from 2012. Furthermore, 5 of them were mine, and 7 were used in a sense that was unrelated to what I was interested in leaving only 13 of relevance to me that predated my interest in the topic! I think this confirms Holden’s opinion (quoted in my earlier post) that this area is under-represented in the HF/E area. I might have to see if I can do something about that!
