Calling men with PMR or GCA in the UK - your input is wanted for Patient Involvement

[tangocharlie]

As fewer men than women get PMR and GCA their experience is often overlooked. So if you're male and feel you have views adn ideas you'd like to contribute towards developing research and treatment etc do get in touch with the patient involvement team and researchers by emailing [e-mail] as there are various options to talk to them both online and in Leeds if you can get there.

[Bcol]

Hi TC thanks for this I'll think about contacting them.

[PRL1957]

Hi, TC. I have just emailed them.

[Zak61]

I've contacted them too...

[yogabonnie]

only UK men__??? Seems like the internet could widen it.?

[PMRpro Ambassador in reply to yogabonnie]

Depends what it is for - I do some of the focus groups from here. You only find out if you ask!

[PMRpro Ambassador in reply to yogabonnie]

This is from the email we received:

"We have a few different ways for you to get involved. Please see the list below for details on what each session involves. If you are interested in multiple events/activities, please reach out to our team letting us know a preference order and we can discuss these with you, as ideally we would like different people at each session. Recognition payments (Amazon voucher, please let us know if this doesn't work for you) and expenses (where relevant) are available for each event.

Looking at the mailing list we have, we particularly welcome men with lived experience of PMR – men often have a different perspective on PMR and it is important to us that this is heard. However, these opportunities are open to all with relevant lived experience.

Mapping PMR Priorities – Four 30 minute online sessions.

A series of four 30-min sessions to build a map identifying priorities for research and the improvement of PMR care held on Teams. These events will include healthcare professionals so there can be a collaborative discussion.

There are two options for attendance, the Monday set or the Friday set. We ask that you try to attend at least 3 of the 4 meetings from the set you join.

Date and time:

Monday set: 3.30-4pm Jan 27th, Feb 3rd, Feb 10th, and Feb 24th.

Friday set: 10-10.30am Jan 31st, Feb 14th, Feb 28th, March 7th.

Measuring What Matters in PMR Research – 1 hour in person event.

An in-person focus group hosted at the Leeds Biomedical Research Centre at Chapel Allerton Hospital. The event will involve using prompt-cards to talk about important questions that could be answered with data from PMR research.

Date and time:

Thursday 30 Jan, 12.45pm-2.30pm

Lunch provided - please let us know of any dietary, transport and access requirements."

Obviously, only the first option is of any use to those of us living outside the UK - and even if you are in the UK, the second one requires a committment to travel to Leeds.

[yogabonnie in reply to PMRpro]

thanks I will pass it on to friend (male) who might be interested!

[tangocharlie in reply to PMRpro]

I was going to circulate all that but wrote and asked them if they wanted me to do so and haven't yet heard back, I'm sure it's a case of the more the merrier

[PMRpro Ambassador in reply to tangocharlie]

They can always say it is full - but if they want some men ...

[tangocharlie in reply to PMRpro]

I was thinking more of the other events listed - though I did write back and say Teams can be problematic for the general public to use. I can never get it to work on my computer and can only get sound not video via my phone

[PMRpro Ambassador in reply to tangocharlie]

I use Teams OK, it is their end that problems tend to arise.

[tangocharlie in reply to PMRpro]

I've just had a message to say the online events are full and I'm on the reserve list

[PMRpro Ambassador in reply to tangocharlie]

I was about to reply - probably not worth it now!!!

[MiniSpec]

Thanks for letting us know about this, I might contact them next week, if I feel up to it. Currently I'm not feeling too well, but I don't think it's anything to do with my PMR. Anyway, I'll let you all know if I do go for it.