Presenting My Pain Management Story and Vision at the Murray City Coast Country GP Training

By |2021-12-18T12:38:24+11:00December 3rd, 2021|Advocacy, Blog, Events, Pain Train|

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 [...]

Presenting at the Murray City Country Coast GP Training Event

By |2021-11-26T13:12:47+11:00November 26th, 2021|Advocacy, Events, Learn, Professional Resources|

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!

Self Management Navigator Tool

By |2021-09-20T11:39:57+10:00September 20th, 2021|Blog, Learn, Professional Resources|

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.

PainTrainMHS: Patient-Controlled InformationSharing Instrument

By |2021-07-29T21:02:21+10:00July 29th, 2021|Help, Pain Train, Professional|

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!!!!

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