You might all remember TangoCharlie asking for ideas for her talk to a large group of Health Care professionals last week.
I was there today and have to say tangocharlie hit it out of the park. Absolutely fantastic talk with some really genuine belly laughs. Very, very engaging and a fabulous advocate for us patients with PMR and GCA.
Dr Mackie also gave a fantastic presentation on her patient participation research and why it is so useful for everyone.
The message is getting out there slowly. We are changing things for the better.
Well done again TangoCharlie.
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Coffeebeans
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Aw thank you Coffeebeans for that and being there. I'm feeling a real buzz now and motivated to do more to spread the word. To summarise for those who weren't there, basically Dr M did a bit about how patient involvement helps her learn and all the things she has been doing like PMR Voices, OMERACT, etc etc and I did the other side of the coin, speaking as a patient saying how everything she does helps us and bridges the gap between how doctors and rheumatolgists think PMR works and how we patients KNOW it works. That got a few laughs. I also put in a big plug for this forum and HealthUnlocked and how it it has helped me over the years.
I also liked the observation you told me afterwards and if I ever do something similar I'll include it. You pointed out that Dr Mackie listens to us and says how's things been since the last appointment? Whereas most other doctors would start by saying 'what steroid dose are you on now and whatever it is you need to reduce!. That's so true, you're spot on
It is true. Dr M always starts with a wide open question which gives you a good opportunity to let her know what's bothering you, conversely I imagine it helps her work out where you are.
It's also useful for working out what problems are related to PMR and what might be a GP issue because we will always discuss it. I don't always know this as a patient so it's incredibly helpful.
Well done,thanks for getting our voices heard.We as patients live with this illness daily.So pleased you did this talk,hopefully more people will realise it is a difficult path to tred with PMR/GCA.
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