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.
I’ve seen a few worksheet ideas now, but this one looks really good and forms part of a brilliant UK website painconcern.org.uk.
Some support is not open to those living outside of the UK, but it will still be of great reference.
Pain Concern aims to ‘work to improve the lives of people living with pain and those who care for them’.
The website is straightforward and easy to navigate; it offers a forum, a magazine, information leaflets and of course, these brilliant worksheets that you can download and use with your practitioner. I’m sure these are valuable no matter where you live.
If you are not online, I would highly recommend something like these sheets to help you manage. Keep them, redownload them and refill them later as your situation changes and (hopefully) progresses positively.
My PainTrain MHS worksheets can also be downloaded. It’s generally a good idea to fill your information out before you begin using the website. If you can fill out the sheets with a trusted health professional, that is ideal! They can help you articulate the pain descriptions to be accurate and in the lingo that other health professionals can understand. This could really help you avoid misdiagnosis and ongoing miscommunication issues. It certainly would have helped me avoid 4.5 years of misdiagnosis had someone translated ‘I feel like I have my finger stuck in a powerpoint to ‘sensory pain’…
I’m here via Zoom for those wanting to jump on PainTrain MHS, but please remember, I cannot offer health advice I would be helping you build your health summary.