How valuable this forum is...: I mentioned this... - PMRGCAuk

PMRGCAuk

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How valuable this forum is...

Mikeysaab profile image
9 Replies

I mentioned this forum to my physio recently and he made a note of it as he was unaware of its existence. Since then he mentioned it a patient recently diagnosed with PMR and my physio told me how grateful she was. She thought she was on her own....

I have told a few people about it since my PMR journey but so few people in the medical profession seem to know about PMRGCA . How about some posters we could download/print off and ask to be placed on noticeboards in doctors' surgeries and physios clinics ?

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Mikeysaab profile image
Mikeysaab
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9 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Do you belong to local group? The leader may have leaflet, they used to hold them....

If not, you can find the nearest to you on link... just tap the closest to you to get more details -

pmrgca.org.uk/get-support/g...

Or contact the charity direct.

Mikeysaab profile image
Mikeysaab in reply toDorsetLady

Hi- no I don't I did contact someone in a local group a while back but never heard back. But I will contact the charity-good idea ! Got to get the word out there, I'm sure like many others, I have found it very helpful! Thanks

jinasc profile image
jinasc

We did when we first set-up and then found

Surgeries, some would some would not. Same for Hospitals, some will some won't. Libraries were quite good and Council's were helpful putting voluntary groups in their Newsletters and also on their websites. Your local GVCO groups are good as well.

We, in the North East, were lucky - two of our hospitals Rheumy's looked at the notice and got in touch and helped us set up two groups.

Good Luck and hopefully things have changed 13 years later.

Mikeysaab profile image
Mikeysaab in reply tojinasc

Thank you and yes, let’s hope so

Marijo1951 profile image
Marijo1951

I took a poster to my GP practice a couple of years ago. The receptionist took it and said she'd speak to the Practice Manager. It never appeared on the wall and when I enquired what had happened, I got mixed messages about their policy, the lack of space etc which I didn't understand. I asked for the poster to be returned if they weren't going to display it but, of course, it had been mislaid (or thrown out)

Mikeysaab profile image
Mikeysaab in reply toMarijo1951

That’s so sad to hear ! Discouraging that there is so much bureaucracy and ‘policy’ that gets in the way.😒

Francesbarbara profile image
Francesbarbara

I asked my consultant if he had heard of it and he dismissed it totally. Very disappointing.

Mikeysaab profile image
Mikeysaab in reply toFrancesbarbara

Astonishing isn’t it!

PMRpro profile image
PMRproAmbassador in reply toFrancesbarbara

Many forums are just sounding-off places and the advice given is not based on sound medical backing. We do our best to arm patients with another side of PMR to the one their doctor may be pushing, especially when they are inflexible and "my way is the only way" - and a lot of them don;t like to be questioned. Even by colleagues, never mind a mere patient ...

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