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.
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!
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
In this video Joletta and chat about:
There's no way I could have set up a video resource section of people who have most impacted my chronic pain journey without including Dr Susie Gronski. That reason [...]
Alexander Technique is a very special kind of physiotherapy. Well, it's kind of not physiotherapy but rather a guiding formula for your body and mind. When I was in my [...]