Today, I share a deeply personal story. Having come across the ditch to New Zealand about 6 weeks ago, to help my Mother navigate some health issues, I find myself still here. This story is still playing out. Everything in the time of Covid is more difficult with the ever-present possibility of a pause or even cessation of the Trans-Tasman Bubble. I came here knowing this and am very grateful that travel between Australia and New Zealand is much easier than it was 7 weeks ago. However, I was totally unprepared for the obstacles that we have been faced with in helping to get a diagnosis and some treatment for my Mother. In the first two weeks, Mum underwent some tests through the Public Health system and we were told that we would have to wait for the results to come back. In one case for two weeks and in the second, await a call into the clinic at the hospital. We reached the anticipated date without any information and then – disaster. The hospital was a victim of a cyberattack. Mum and thousands of others, some with serious health needs were “lost” to the system. We were powerless. Over the next few weeks, Mum became more and more anxious and apparently sicker and sicker. Her GP could not do anything to help, as she did not know what was wrong with her. The advice was, if she was acutely unwell to go to A & E. Problem was that she was not “sick enough”. We got to the point where there was no end in sight for rectification of the security breach and we did not think that we could continue. Some reports said that it would be at least another month. (The end of June). The uncertainty was doing our heads in. I consulted with a couple of my friends, one a GP and the other working high up in administration at another big hospital in New Zealand. They both listened closely and agreed that something needed to happen and that we should present to the Emergency Department early the following morning.
On arrival, we were met by a gatekeeper at the door. We were questioned about why we were there and made it through to the next stage, the triage window. Mum was told that despite having some significant symptoms that she was not sick enough and should not be there. Despite, this the triage nurse continued to listen and decided that she would allow Mum through to the “next stage”. We had made it through to the examination/ clinical area and Mum had to relay her problem again to the nurse. She also asserted that Mum should not be there as she was not sick enough. She told Mum that the Doctor would come and see her. The Doctor came and took her history and examined her. She stated that this did not seem to be an emergency but fortunately continued to listen. The reason that she continued to listen is that Mum had access to her own electronic MyHealth record which gave the doctor important information about what had happened to her in the past. The information was comprehensive and informed the doctor of Mum’s medical history. She said that she wished that everyone had one.
The Doctor told Mum that she would see if she could find the results of her tests, although because of the cyber-attack, she could not make any guarantees. She would also get a specialist registrar to come and see her. Some success at last! They did find the test results, which were handwritten and cleared Mum of one serious problem. When Mum saw the registrar, she once again, took Mum’s history and said that she was not sure that she was sick enough to be there. She listened and then decided that she would admit her, to await an angiogram. Mum waited as an in-patient for 4 days. When she was waiting in the pre-admission room for the procedure, they came to her and said that they were considering whether it was really necessary, were thinking of not doing it and sending her home. Fortunately, they listened. They are now really listening, as the angiogram discovered a 90% block in the major cardiac artery and Mum is on strict bed-rest awaiting a cardiac bypass. The hospital still wanted to send Mum home on bed rest but she is not going anywhere. We had to work too hard to get her to where she is now.
This personal story has a few lessons:
- Listen and keep listening.
- Listen to understand.
- Uncertainty makes people unwell.
- Do not open emails with attachments from unknown sources
- Consider the security of your electronic records and what would happen in your practice if you could not access information.
- MyHealth Record is likely safer security-wise than your data in other areas and it might save your life
- Sometimes we need to advocate for our patients to help them to navigate unfamiliar systems. It can be very difficult!
Dianna Howell Certmgr MIML MAPA