The Lighter Side: Quick Update from the South Wing - and an Idea to Spread the Word about PMRGCAuk and its Good Works..? ;-)

[markbenjamin57]

Greetings to You Lot of Polymylingerers and Pred Playmates, wherever and whoever you are.

First, many thanks for your responses to my Post last week about The (flat) Move, and I feel well and truly reprimanded by The Venerable Aunties (and a few others here) for 'messing around' randomly between The Pred Club and Pred Club Zero a bit like an arsonist in a petrol station. Yes, your advice not to push things is acknowledged and appreciated. So ,a temporary renewal of my TPC membership at a steadily reducing DSNS- style 2mgpd +/-for now, at least. I know my place.... ;-/

Now, on to other things which might be relevant to all of Us Lot either in the UK or overseas (?):

Today I dropped in (not literally - I gave up parachuting years ago..) to my local GP (Doctors') surgery armed with a stack of 100 1/3 sized A4 PMRGCA information leaflets, cautiously asking if they would put them in the waiting room in case that would help any other existing PMR / GCA patients or Newbies.

To my delight, the Receptionist also offered to distribute them to the other surgery in the Practice, no conditions attached. No 'Computer Says No' response, so RESULT!

This easy entry into the GP Surgery 'Promo Marketplace' made me think about how to 'Leverage-up' (to use another cheesy marketing term) the ever important PR / Awareness Raising mission for PMRGCAuk - and the spin-offs for getting Bums on Seats at regional Meet-up and Support groups in the UK, and much more besides.

As an Ideas Man, and off the top of my head, here's a suggestion for a cunning 'Pincer Movement' PR plan (if no-one has thought of it before..). It goes something like this:

Regional Groups... Many Members regularly visiting GP surgeries (for whatever reason)... When visiting, take a bunch of PMRGCAuk leaflets and ask to be displayed publicly (the leaflets, that is). Before you say it - not a 'Selling' job - just spreading the word, helping the PMRGCAuk Cause, and of course, helping others who don't know about PMRGCAuk / the local Support Groups, and possibly a few GPs too?

'Do the Math' (as they say in equally cheesy marketing lingo): an Army of 6-ish thousand mainly UK members, at least a few of Us Lot On the Case, no marketing / distribution costs for the Charity other than supplying each local group with a stock of leaflets, and (Important!) asking local members to help out when next visiting their GP.

I'm sure that you local Organisers of Support and Meet-up Groups will have your own ideas about how this could work (or, maybe, is / isn't already working?), but I though it worth a shot. All feedback welcomed and with an open mind, as always

That's it for now: re-grouping after a busy long-weekend away and family celebration (the marriage of one of my 5 Nieces), a successful Talk to that nice Lot at the Taunton PMRGCA group yesterday, Tedski out jet-skiing in the bay, and the Limo keys retrieved (phew). Red wine open (no surprises there, then), all's well with the world.

Onwards and Upwards.. or is it Sideways - and does it matter in the Big Scheme of Things?

Best wishes and try to keep smiling on the PMR GCA Journey

'Uncle' MB

[PMRpro Ambassador]

Just for interest: Kate said the other day that there are about 2000 "active" on the forum at any given time - the 6000 is a cumulative number.

[markbenjamin57 in reply to PMRpro]

Yep, that makes sense. But 2000 is still a considerable number of 'Advocates' who can contribute to the 'marketing' (i.e. awareness-raising) effort if guided in the process..?

[CT-5012 in reply to markbenjamin57]

Maybe pass some on to the local groups who work with older people.

[markbenjamin57 in reply to CT-5012]

Good idea...

[shella in reply to PMRpro]

I am amazed at the number - guess must be fellow sufferers!

[PMRpro Ambassador in reply to shella]

PMR is the most common cause of rheumatic symptoms in over 60s.

[markbenjamin57 in reply to shella]

Yep Shella, and how many people are walking (or shuffling?) around out there with PMR and / or GCA who aren't aware of it or un-diagnosed? The mind boggles...

[PMRpro Ambassador in reply to markbenjamin57]

Not to mention the people who refuse to engage with a computer - much less "social media"!!!!!

[markbenjamin57 in reply to PMRpro]

The mind boggles... Maybe that's where / why the local Support & Meet-up groups are an important string to the 'marketing' (i.e. awareness raising) bow..?

[PMRpro Ambassador in reply to markbenjamin57]

They are - if you go to some of the meetings you will find almost no-one who uses the forums, any of the three. But 30-60 people who have PMR/GCA...

And then there are the people who don't even know...

[Marymon]

Good idea Mark, thought the same thing when sitting in surgery waiting room. Might actually be looked at by 'get off the pred' Drs.

Also, when staggering off the chair in the hairdressers, started to explain it was due to PMR, not alchol, she replied "it's alright I have several customers with it." I haven't mentioned it again as rather endlessly answer questions on my exciting week, done holidays to death. But

my weekly indulgence is a blow dry, 🙊 since no longer able to raise my creaking shoulders.

Where do we get leaflets ?, or I can print them off.

[markbenjamin57 in reply to Marymon]

Mary, I think contact your local Support and Meet-up Organiser or maybe PMRGCAuk direct?

[Marymon in reply to markbenjamin57]

Thanks Mark, will do.

[Hidden]

Good to put a face to a name Mark at Taunton. I think I was a red triangle!

I have given posters to my 3 surgeries plus one in Uffculme and Cullompton. My hairdresser has put one up for me. Her mother in law had PMR/GCA and lost her sight. I thought I would go to the 2 care homes in Cullompton, as used to take my PAT Dog Pippa there. Also Community boards in the main supermarkets.

[markbenjamin57 in reply to Hidden]

Ahh,, I remember well R****a Well done, keep up the good distribution work

[Polymialgia]

Please could you send poster to Coleridge medical centre Ottery st Mary, I feel as if I’m the only person in Exeter / Devon with this and would love to discuss with others , wonderful that my practice is I’ve yet to get someone who really understands the condition and can answer my questions

[markbenjamin57 in reply to Polymialgia]

As above Poly. To help in the distribution effort, maybe get in touch with your local PMRGCA Support group organiser for some leaflets etc, and then drop one personally in if you are passing your medical centre? You can find details of local groups & contacts on the main PMRGCAuk website.. good luck!

[Polymialgia in reply to markbenjamin57]

Unfortunately there is no local group in Exeter, Not that I can find anyway, which is why I replied to you

[markbenjamin57 in reply to Polymialgia]

Oh, I see. Then try Taunton and / or Plymouth since they are probably your closest? Wendy Morrison at the Taunton group is very helpful, her contact details are on the main site under 'Taunton Support & Meet up Group'.

[karools16]

MaRK, I have been meaning to do this for some time, but procrastination is my middle name. Jolted now into action.

[markbenjamin57 in reply to karools16]

Bless, karools, thanks!

[Estellemac]

I will gladly insert leaflets in to my Doctors.................

Surgery

[markbenjamin57 in reply to Estellemac]

Careful now Estellle...

[PMRpro Ambassador in reply to Estellemac]

You are too tempting...

[shella]

I left the only two leaflets I owned at the surgery last year... time now for a huge concerted effort by all of us to flood the market..😅..now this is where Hon Uncle MB comes into his own with his able assistant Sir Ted......when he’s not out there partying.....

.....Radio/magazines/hospitals/day centres....hairdressers.....that’s just for starters!

WE WILL BE HEARD!! 😅

can we get hold of loads?

[markbenjamin57 in reply to shella]

That's what I like to hear, shella!

My logic / (Strategic Plan ?) is that if 2000 (or however many?) of Us Lot each do a tiny bit (i.e. get some leaflets in front of the right people) it will spread the marketing 'load' and give PMRGCAuk a big Boost in terms of awareness raising. It's also an excuse to get out and make some friends in our communities for a very good cause? 'Look Out, the PMRGCA Army are out and about..?!'

As for getting hold of leaflets - as I mentioned, the first / best option is probably through local Support Group organisers? But the 'Bosses' at PMRGCA might have their thoughts too - if anyone's tuning into this thread...

Tedski's also on the case - any excuse to borrow the Limo and get out and about...

'Uncle' MB OBE*

*(One Boiled Egg)

[PMRpro Ambassador in reply to markbenjamin57]

Sorry to chuck a spanner in the works - but who's paying for the printing?

[shella in reply to PMRpro]

If those with printers are willing ? Just need an original....,🤔

[markbenjamin57 in reply to PMRpro]

Mmm.. surely there is some existing stock or a budget for re-prints.. or how about casting around for a sponsor / sponsors?

[PMRpro Ambassador in reply to markbenjamin57]

BUDGET? You are kidding aren't you?

[Rugger in reply to markbenjamin57]

Sorry to echo PMRpro's words, but the charity is small, as you know, and needs to raise much needed funds. Taking 100 leaflets to one surgery seems a bit OTT to me - maybe 10 to each of 10 surgeries would get the word more widely spread. Your doctor is very unlikely to have 100 patients with PMR or GCA, unless there's a cluster in WsM that I'm not aware of!

I took 2 leaflets to my GP's surgery and asked them to put them up on the notice board - the front of one and the reverse of the other. They've been up for weeks now, so I hope they've been seen by a fair few patients in the waiting area.

Otherwise, keep up the good work, Mark.

[markbenjamin57 in reply to Rugger]

A fair point, Rugger. Thanks, and I broadly agree...

Numbers (of leaflets distributed - 10 or 100) aside, my main point was / is that if we - or a few more of us at least - can and are willing to invest a little time and effort in strategically spreading the word and info about PMR / GCA to the right audience(s) in our interactions with suitable Advocates / Supporters, the Charity and local groups will benefit as a whole.

My hypothesis is that if, say, 'x' (or whatever) number of leaflets are on display at (for example) a GP surgery or suitable Community Group for 12 months to broadly correlate with the numbers of potential PMR / GCA patients who might spot them, pick them- up and read them - and / or pass them on to other family members / friends / neighbours who might benefit from knowing about the PMRGCAuk Charity and its great works - this will hit the 'Target Market' for PMR / GCA(e.g. Age 50+ etc) more effectively than a random, ad-hoc approach to the outreach process.

I agree - it's important not to waste resources (time, energy, printing costs etc) on an avalanche of 100's of leaflets to individual outlets (e.g. GP surgeries). More about a targeted and strategic Drip Feed of an appropriate number of leaflets to, or conversations with an as-wide-as-possible number of relevant outlets / 'promotion points' where there might be Influencers / Advocates for PMRGCA to their audiences. From my Sales and Business / Marketing background, it's not an exact Science: but at the same time a little analysis and thought / planning can help to make the marketing effort more cost and time effective.

That said, the above inevitably surfaces the issue of potentially being seen to overload well-intentioned local members / volunteers who might feel coerced into the 'marketing' effort (Yes, I know the term 'Marketing / Promotion' are dirty words to some from non-business backgrounds) - and who, for various reasons, might not want or be able to take part. But that's a choice that we all ultimately make.

All the same, PMRGCAuk's Mission is to promote awareness of, and funding for important research into both the causes of, and encourage more targeted and effective treatments for these awful illnesses, as well as providing support and advice for those who are 'battling' with them. So, in my books, the terms 'Marketing' and 'Promotion' are ok and ethically valid in this context.

My overall point is that with, say, 2000 active UK Members (+/-?) and a national network of 13 (+?) regional support groups, we have a great opportunity to exploit our collective power in raising awareness of PMR and GCA in the public domain - and at minimal cost if we share the load.

Maybe this goes some way to answer the thorny issue of budgets / costs for all here?!

As always, I'm open discussion and any ideas are invited and welcomed. My role and mission is simply to assist PMRGCAuk in its valuable work

Best wishes

MB

[Rugger in reply to markbenjamin57]

Agree with all you say about spreading the word and helping PMRGCAuk, Mark.

I didn't mention that I'm joint Group Organiser with Primrose2 of the Ilkley group. Also, my rugging group (westridingruggers.co.uk) have adopted PMRGCAuk as the charity to benefit from our raffle takings in the last 12 months - every little helps!

Best wishes to you too.

[PMRpro Ambassador in reply to markbenjamin57]

I think that even the 2000 is an over-estimate, I don't know 2000 names of regular posters for example. There are people who join and never read never mind post. And probably a third at present are not in the UK? I'd willingly help - but wouldn't help in my GP's or hspital department!

Contact the charity about it as I was told they are working on how best to get through to GPs and do have some funding for it - but that is the crux and a couple of approaches have already been abandoned as unworkable. Maybe if we all get together ...

[scats]

I feel the publicity needs to two pronged. As discussed above to raise patient awareness and a different approach for GP's so they become more aware of how patients are affected by this disease ,Twohig et. al. perhaps and/or extracts from the forum. It will need to be short and hard hitting or it will go unnoticed.