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!!!!

A PainTrain Post CV-19 Update

By |2020-11-30T11:23:56+11:00November 30th, 2020|Blog, Help, Pain Train|

Watch and listen to my PainTrain Post CV-19 update. I missed my health summary. I didn't feel right not having my own history. Sure I have health files all over the placed (physically, digitally, with many professionals, x-rays galore) but PainTrain is a bit of a rock for me. It's my safekeeping. After not having PainTrain for months, what I most kept thinking about was 'what if I have to go to an appointment and meet a new healthcare professional?'.

«Χρόνιος πόνος: η ύπουλη ασθένεια που κλέβει τη ζωή χιλιάδων ανθρώπων»

By |2019-09-26T17:14:15+10:00September 26th, 2019|Advocacy, Blog, Online, Pain Train|

(Excerpt from Neos Kosmos feature story, Chronic pain: the treacherous disease that steals the lives of thousands, MAΡΙΑ ΚΑΜΠΥΛH 25 September 2019) Η συγκλονιστική συνέντευξη – κατάθεση ψυχής της ομογενούς Σούλας Μανταλβάνου, που [...]

My Health Record vs PainTrain My Health Summary

By |2018-07-22T14:06:28+10:00July 22nd, 2018|Help, Manage, Pain Train|

Um, actually, they aren't in competition. They are two very different online resources. There's no turning a blind eye or choosing to stay away from this technology change as it is affecting you right now and there is a decision you need to make within three months about your autogenerated account on My Health Record. Are you staying in or opting out? I opted out. And not because I think My Health Record is a poor concept – it's a great idea! Remember I've made a type of online health summarising resource myself because I realise how important it is to organise your health information and communicate more efficiently with your health team/s.

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