My Health Story is now live and has totally replaced PainTrain My Health Summary. My Health Story goes beyond helping people communicate their stories of living with chronic pain. It now presents a way for more individuals enduring chronic and complex health issues to communicate their health stories and manage their healthcare better. For healthcare practitioners, it presents an opportunity to diversify your care offering and influence positive behaviour in the overall patient journey. My Health Story takes a holistic view of each unique lived experience and understands that patients are more than their disease.
Congratulate me! I have been awarded expert mentoring with Buzz Web Media and Women With Wit’s – Lee Ussher under the Australian Government’s Boosting Female Founders Initiative (BFFI) for PainTrain [...]
I was so close to throwing the PainTrain My Health Summary idea out the window when COVID-19 hit. There was no way I could be positive about pushing on with my little train startup while a pandemic was approaching. But as it turned out COVID-19 catapulted telehealth behaviour and with that came increased interest in health tech and a newborn... the digital patient! My creative communication experience always encouraged me down this complex path – I found healthcare primitive! The way people manage their health and the way appointments are managed has not changed for eons. If you live with an ongoing medical condition, we know now that it takes teamwork to manage it and you have to be responsible for your own health information (or it all gets documented incorrectly!). Clearly, I believe that we need to step up and manage our health and all things relating to it. We especially need to do this because we all have such lengthy stories to tell! So on that note, here's my big news from my humble little train which is now planning to go way beyond its destination... if you help me, there's a lifetime subscription in it for you!
PainTrain My Health Summary is growing up and I would love your insight to guide me through this very important growth spurt. As you might know, I founded PainTrain MHS to help [...]
It was wonderful sharing my story and vision at the Murray City Coast Country GP Training. AND especially presenting on a stage and in actual physical life to 50 general practitioners (GPs) who [...]
There are no formal qualifications for someone living with chronic pain but patients are considered 'patient experts' and our lived experience is very much valued. I've been invited to several seminars and training sessions relating to chronic pain over the course of my 14-year experience. It's of great significance for me to be able to use the lived experience – no other value for it really!
I've been on the communication case for a while now with PainTrain My Health Summary (PainTrain MHS), as you all know. So when my dear friend (sleuth) and Advisory Member of PainTrain MHS, Mandy Mercuri, sent me news of the Self-Management Navigator Tool, I was thrilled to see it. My professional communication background alerted me throughout my misdiagnosed years (and beyond) that something needed to be done about the ongoing appointments we all have to endure. In my view, the distress of miscommunication, not feeling understood, blank stares, the expense of wasted appointments, and the rest that you are all too familiar with is critical to helping people manage their illnesses. This type of approach is now being embraced, and it will be unavoidable for patients to adopt a new way forward if they are expecting the best care. Sadly those living with an invisible illness can not be passive patients. We have to create and navigate our own individual paths. As if we need more work! But it's genuinely the only way forward.
When viewing my enormous health timeline (pictured), I feel like I've put the information and experience somewhere – it makes it authentic and validates it. Few people validate our experience of living with chronic pain. But this is a way I can validate it and value it. I want others to validate and respect it too. PainTrainMHS helps me do that when I present the information. Showing this to various practitioners and hearing their responses means a great deal to me. It also means a great deal that they grasp an in-depth understanding of my experience. No GP referral letter will ever include this much detail. I always find important information about me has been left out of the letter. All these feelings and activities are part of my pain management strategy – it's not all just about treatment, it's also so much about what I manage day-to-day, and there is so much detail in that day-to-day management. What I also see looking at my timeline is how my appointments have gone from red (bad) to blank (neither here nor there) to green (good). My experience is shown precisely and all it took was a glance. Have a look at how lost I was in the first few years... it was awful!!!!