PMR Voices Survey. Please participate if you have the time and inclination.

[SheffieldJane]

See attached

Good day everyone,

I hope this email finds you all well.

Dr Sarah Mackie, Lorna Neill, Margaret Grover (both from the PMR community) and I have created a survey to hear from people living with Polymyalgia rheumatica (PMR) in 2021. We want to come up with ideas to make things better for people with PMR. If you have ever been diagnosed with PMR, we want to hear from you.

The survey should take no more than ten minutes to complete and will ask you to think about a "meaningful moment" that you have experienced along your PMR journey. It could be a big thing, or a small thing, but what matters is the significance and meaning that it has to you.

Once you have completed the survey, you will be invited to attend a workshop where the consented "meaningful moments" will be anonymously shared and discussed. From this we hope to pull out even more insight about the experiences of PMR patients. More details about this are included in the survey.

The survey can be found on this link - leeds.onlinesurveys.ac.uk/p...

The survey will close on Monday 25th October 2021.

If you are a member of a PMR group or know others who are living with PMR, please do share the survey amongst your peers.

If you have any queries, please don't hesitate to contact me on [e-mail]

Thanks very much for your participation,

Lorna, Margaret, Sarah and Amy

Amy Rebane

Patient and Public Involvement/Engagement Manager

NIHR Leeds Biomedical Research Centre (BRC)

Chapel Allerton Hospital | Chapeltown Road | Leeds | LS7 4SA

T: I am working from home, phone calls can be arranged via email

E: [e-mail]

WEBSITE: leedsbrc.nihr.ac.uk

SUBSCRIBE to the BRC mailing list here: leedsbrc.nihr.ac.uk/keeping...

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[Rugger]

Thanks Jane for bringing this to everyone's attention. I've already done it, as I was involved with its development.

[PMRpro Ambassador in reply to Rugger]

Me too! But have a look as the one we got to assess has probably been changed in response to the feedback and one of my emails did say that was possible.

[Rugger in reply to PMRpro]

Yes, we have to do it for real now, as the first time was a dummy run!

[Nextoneplease]

Just completed - very easy to do and a good way of teasing out significant issues.

Thank you 😊

[Longtimer]

Filled in, thank you...no good complaining if we don't try to change things!

[Songbird69]

All done! Thanks for sharing

[jinasc]

GCA?

Have you read Helen Twohig's paper -duckduckgo.com/?t=ffab&q=He...

"I suddenly felt I'd aged": a qualitative study of patient experiences of polymyalgia rheumatica

Done and published 2015.

[Nextoneplease in reply to jinasc]

Gosh yes, I felt I’d aged at least 20 years overnight - and become dependent on my husband to get out of bed, put on a dressing gown etc 😳 There was a period of about an hour in the afternoon when I could shower and clean my teeth (electric toothbrush only) and that was it!!! Thank goodness for prednisolone…..

That said, picked a more recent moment for the survey x

[Bennijax in reply to jinasc]

Thank you for this link

[nuigini]

Done. Will be interesting to see the results.

[Poshdog]

Done it!

[Redoct]

Survey completed. Thank you.

[cycli]

ditto...great idea thanks

[Lochy]

Done.

[Alchemy8]

Very unclear as to what "meaningful moment" means or requires.

[Nextoneplease in reply to Alchemy8]

I have nothing to do with setting this up, but I simply chose a moment that was meaningful to me personally - I think that’s the point - so there will be a whole range of contributions and that’s the interesting thing 😊

[SheffieldJane in reply to Nextoneplease]

I think Alchemy has the right idea. Mine was’t profound or anything, it just encapsulated the experience for me. Like Jinsac said about feeling suddenly old.