Update to formation of new group in New Forest

[CocoaChanel]

Further to my recent post about the formation of a new group round the New Forest area, for various reasons I have decided to let it go. I now get fatigued easily, not so much go to bed tired but a lack of drive – the feeling is ‘just can’t be bothered’.

I was originally thinking a very informal meeting for coffee and a chat in a local café/pub/garden centre but from the few replies I received (admittedly haven’t tried very hard) I can see that what interest there is, is widespread around the area and some people rely on public transport which makes the logistics complicated and I don’t really want to travel more than about 5 miles myself.

I met up with Doreenyw a couple of days ago for a very pleasant chat over coffee after we realised that we live next door (not literally) to each other. This has made me think that maybe it would be a good idea to make it possible for everyone who wants to, to enter their village/town/city of residence on this website so we can all do our own thing rather than a more formal, rigid group structure???

[DorsetLady PMRGCAuk volunteer]

This has made me think that maybe it would be a good idea to make it possible for everyone who wants to, to enter their village/town/city of residence on this website so we can all do our own thing rather than a more formal, rigid group structure???

Nice idea, but not on the open forum though - for reasons of privacy, safety, HU rules and [not least} the Database Protection Act.

It would need to be done on the Chat facility - and that is limited to 10 members at a one time...

Pity about new group, but there may be someone else willing to take up the reins...

[PMRpro Ambassador]

Would you be up to coordinating something like that for your area? Not actually physically organising meets. That info can't be on the profile for the reasons DL has given - though I suppose the region being provided might mean the "members near me" search might work.

[CocoaChanel in reply to PMRpro]

Yes, I’m up for coordinating something in my immediate area. Are you saying that there is a ‘members near me’ search or that it would be a good idea to introduce it?

[DorsetLady PMRGCAuk volunteer in reply to CocoaChanel]

Not sure the 'members near me' is still working...it used to pick up postcode - always assuming they have entered that on profile - bit I think it's been replaced by 'similar to me'

Might be worth looking at the Explore Option on the Home page Under Profile on lefthand side to see if that's any good.

[CocoaChanel in reply to DorsetLady]

Thanks. Am having a look at that now

[PMRpro Ambassador in reply to CocoaChanel]

No - I think there used to be but I just looked and it is now "members similar to me" and I know from experience the suggestions WEREN'T!!!!

I just wondered if you put up a post with a suggestion like that if you might get 10 people interested in knowing others local to them in your area.

If it worked, perhaps PMRGCAUK could offer a bigger service if more people were interested - no idea if they can with data protection etc. Some of the postcode areas are enormous of course and if you live close to the edge of one, you'd be interested in people in the adjacent area. But someone would have to do the coordinating. Just a thought to get people together if they were in a position to meet but have no idea where others are. Once you get the hang of it, Zoom or Messenger groups can be great fun, no travelling required and your beverage and food of choice are up to you!!! I was part of a group of 3 - the north of England, USA and Italy met with no trouble once we got the times sorted out.

[CocoaChanel in reply to PMRpro]

Yes, just found ‘members similar to me’ and the one member I know lives close isn’t on there!

I’m thinking of going up to my surgery to have a chat with the very nice receptionist there to see how possible it would be to contact other PMR patients through the surgery.

[PMRpro Ambassador in reply to CocoaChanel]

You could certainly leave a note, like a visiting card, to be offered to PMR patients and have a notice up. I would create a separate email address for contacts so you don't advertise your personal one. There must be a way ...

[DorsetLady PMRGCAuk volunteer in reply to CocoaChanel]

As PMRpro has said not sure ‘members similar to me’ algorithm really works… the ‘members near to me’ was at least useful…but probably someone complained it breached the DP rules somehow!

[PMRpro Ambassador in reply to DorsetLady]

Do any HU algorithms work??????

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Nah!

[PMRpro Ambassador in reply to DorsetLady]

😂 Have Wales remembered how to play rugby???

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Seems that way at the moment… 😊

[AmberGamble in reply to CocoaChanel]

I spoke to my GP about the lack of understanding & awareness in general about PMR & GCA. He responded by inviting me to address the PPG - Patient Participation Group, which I will do when I can make the date!

I also asked could we get something onto the screens in the waiting room, he was very keen to do that too. I am just waiting for the Charity to furnish them with what they need to do that. In fact I’ll chase it up as I think the Drs are still waiting 😉

Good luck with your endeavours, maybe a group will grow in the future.

[Ballerina75 in reply to PMRpro]

I’m a group organiser in Kent & it was kick started by asking the Practice Manager if they could contact all sufferers. This avoids security issues for you, it worked well here & continues to thrive nearly 4years on, we’re more like a friendship group now! Good luck.

[PMRpro Ambassador in reply to Ballerina75]

That's really useful.

[CocoaChanel in reply to Ballerina75]

That’s really useful, thanks. I’ll write a letter!

[Purplegloss]

I live in the New Forest.

[BlueHog]

I live near the New Forest and been desperately wanting to meet others, so I’d very very interested in meeting up (on a good day of course!)

[KASHMIRI1]

I live in the New Forest. Its great