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.
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In my attempt to implement PainTrain My Health Summary (PainTrain MHS) formally into the healthcare industry, I'm now heading past what feels like planet Pain Management and toward the Health Tech solar system. It is exciting! There are movers and shakers here, and I'm standing at the Talking Healthtech (THT) station. THT was founded by Peter Birch. Peter worked in management roles in healthcare organisations for over 15 years; big ones and small ones, innovative startups and slow-moving beasts, he's seen all different kinds. Pete has experienced the exciting developments and the frustrating stagnation of all the ups and downs in health. Now, I'm not saying chronic pain researchers aren't movers and shakers, but I feel like I'm static in their world, just repeating my story over and over. 'Lived experience' is becoming as tiresome as 'journey'. Now there's 'Narrative Medicine', which are all great descriptors, but the effect of those words on people living in pain right now feels still? How many times can we repeat the same information? We get it, practitioners hear it; pain is complex, and you need to listen to the patient more... but can you fix it now, please? I'm hopeful my new world will lead to some kind of collaboration or new opportunity. It undoubtedly has led to significant new connections, one of whom is Dr Valerio Vittone, a PhD in Biochemistry, Molecular Biology & Virology. In other words, a specialist in personalised DNA based nutrition, health & lifestyle advice! So stay tuned; my DNA kit is in the mail! We know the need to progress healthcare is a serious one – but if you consider it took a pandemic to get telehealth functioning, it's scary!
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!!!!
Lockdown time appears to be crucial for pacing back to whole life. Every lockdown has given me a leap of some kind. I genuinely think lockdown together with my spinal cord stimulation has armed me like never before in this 14-year journey. There are moments I'm so comfortable. Of course, it's seconds and minutes, but it's soooooo freeeeeeeing. I 'just' walk over to get something – nothing is restricting me. No fog, no warning signal; it's just me moving in the space. So I can totally focus on what's in front of me, I can hear the quiet, notice the dust and envisage all the things I plan to do.. to the end! It's an uninterrupted dreamy sequence! If memory serves me correctly, this is a typical experience and a sequence that should be totally taken for granted instead of awed. I haven't experienced this before lockdown. EVER. CHECKPOINT: 14 years, 4 months and 21 days (or 5257 or 172 months, 21 days), I have experienced a short uninterrupted sequence of normality.
Dear Daniel Andrews MP, It's wonderful to see that your recovery is going well. As a 52-year-old person, I like to think that I live and learn from life experiences. I imagine someone in your position would take that sort of approach also and that with your own living and learning and the experience of Victorians you gather realistic references for your ongoing decision making. Taking this terrible recent accident you have had into account (whether a work injury or not), a horrific pandemic and two reports by the Victorian Ombudsman, I have hope and the expectation that you might be in a position to relate far more to Victorian injured workers (of which I am one) than ever before. Being more specific, can you please consider how you would feel: – being questioned about your injury – being told by an insurance company that the reports about your health from your own medical team do not suffice – having investigators photograph you around your home and day-to-day – being sent to an 'independent medical panel to be reassessed and to prove your injury
How I love mycuppajo – the wonderfully beaming human officially known as Joletta Belton. I was introduced to Joletta's blog by a mutual friend, Dr John Quintner (pain educator for Arthritis & Osteoporosis WA and retired pain physician). Jo's experience (science and creativity) makes her documentation about the complex lived experience real, interesting and easy to understand. It's so easy to relate to Jo. Jo and I also share the added frustrating experience of being an 'injured worker' and having to 'defend' our injuries to unjust workers' compensation systems. Reading Jo's blogs and following her tweets makes me feel I'm walking right beside her, sharing in her extraordinary network of advocates, practitioners, professionals, organisations and of course, kindred spirits. Her advocacy and achievements are extraordinary – she is a force driving change throughout the world of chronic pain. I'm so happy to be able to chat with Jo and deliver this video to you all. I know it will be inspiring, energising and informing. I also know that much of the way through you will have beaming smiles on your faces. It's just impossible to speak with Jo and not smile! Jo provided the below resources which we touch on through the chat. You can (and should!) subscribe to mycuppajo.com and also follow Jo via Twitter @MyCuppaJo