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!
'His most revolutionary finding was the utter lack of evidence for either axons or dendrites fusing and forming networks like those described by Golgi. He observed that, on the contrary, it seemed neurons did not need to touch to communicate. They only had to be contiguous for signals to be transmitted from one to the other. (The term “synapse”, used to describe the structure that permits a neuron to pass on its signal, would not be coined, by Charles Sherrington, until 1897.)
APR 10, 2021: Pain Toolkit workshop For people with long-term persisting pain by Pete Moore
And ladies can also benefit as well! I’m signed up to Dr Susie’s news – highly recommend you do so also as she is a wealth of information. Although Dr Susie specialises [...]
In what's becoming a life trek in the aim of defining my ongoing pain issue, there's a pattern I'm beginning to see. Most often when I read educational material and it feels like it's beginning to gell with my experience, I feel a suction begins to the words. I'm drawn into the paragraphs of the researcher/s and excitement kicks in. 'I'm going to find the definition, this person is speaking my language!' It gets wilder and wilder – think Willy Wonka's crazy boat ride (below, but hold on to your pelvis!) and the findings and resources amount to great support material. I begin to believe – 'this is IT!' But Like Willy Wonka's crazy boat ride, somewhere along the way it gets freaky, the definition starts to go off my track and as I keep reading I'm feeling that I'm coming unstuck.
When I started this website, my hope was to connect people living with pain with healthcare practitioners. At the time (2011), there was no online information or help for Pudendal Neuralgia and other such pelvic pain. I thought if I could provide the information in one place, it would help everyone connect and solve dreaded pain issues or at least speed up the diagnosis and treatment process. I didn't hope it would take nine years. Nine years...!!! But we have arrived and the point is that anyone can access this information session.