A Rough Guide to PMR GCA uk history : so far May ... - PMRGCAuk

PMRGCAuk
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A Rough Guide to PMR GCA uk history : so far May 2020 - by a FOUNDING member.

jinasc
jinasc

Where the Vikings crossed from the North Sea into the Atlantic.

Not specifically aimed at anyone in particular I just want you all to know that progress is ongoing and it is still uphill work.

There was less before 2007.......................progress has been made and will continue to be made.

PMR GCA uk and PMR GCA Scotland, both operate on a shoe string. PMR GCA uk, only has 2 part time workers, the rest are volunteers, as the support groups are run by volunteers. Scotland has volunteers only.

Patients on this site and Patient info, many of them do not join and pay membership fees, or even send a one off donation.

Just in case you think, who is she to say this out loud.

Yes, I am one of the original five who met on Patient info, (2 who are still active and volunteering) got together with another 19 people and Professor Bhaskar Dasgupta (the one man who had a dream) paid for a meeting place, tea/coffee and lunch in London, The remaining 24 paid their own way (from all over the UK) and for the majority that meant an overnight stay and for 2 people - a taxi 283 miles each way - (as the rail lines had failed) on 14 March 2008, that meeting decided to set up a charity to support, raise awareness, set up support groups and finally research (the latter being very expensive . Scotland already had a charity, run by one lady, - to whom I owe a lot.

Our small set-up (3 at first then 6 all volunteers (only one who did not have either PMR or GCA ) in the North East, managed to make a DVD on both for Patients and Families and also a booklet called 'Living with PMR and GCA'. We applied to the Regional Lottery Fund and managed to get £10,000 over 2 years...........which enabled us to produce the above and also the Conference in the Centre of Life, where we launched the DVD and the Charity and I met PMRpro. Open a website and produce a Newsletter, both called 'You are NOT Alone' just like the DVD.

Over 12 years we managed the following:

1) Due to a legacy from one of our members, to donate £8,000 to Sarah Mackie to enable one of her med student to raise the rest of his fees to go to Spain for one year to study Micro- vessel imaging in relation to GCA.

2) We also funded the NHS, with £1,000 for the research project 'Your Ears'. Before we could get them interested, one of my Consultants talked to us about what he had found.......so we did a lot of background work and we proved this research needed to be done. Only the NHS will undertake research, when the end result means there is not money in it.

That research resulted in the 8th Cranial Nerve involvement paper published last year, which hopefully will be added to, in the future, the diagnostic procedures.

3) Dr Helen Twohig (researchgate.net/profile/He...) We helped with her research and does sterling works with OMERACT, just like Sarah and PMRpro and Lorna.

4) Then when we closed down last year, we gave the QE hospital, one of the Consultants Saravanan Vavidelu who had been with us since day one as a patron, just like Sarah, £10,000 to train GPs in the North East and Cumbria

This is the project in PMRpro's reply "Send a copy to Sarah - who is to be involved in a GP training scheme in the north East".

How many members did we have - not many in the great scheme of things:

We started out with 13 in Gateshead and 24 in Middlesbrough and 2 Consultants who helped us till the end. The biggest membership we ever had was just under 200. Membership fees were £5 to start and finally ended up at £12. Family, friends and carers who came to the meetings - no charge at all.

Members who were patients and their family and friends, raised money for us constantly . The man who now runs the North East Support Group and members of his family ran the GNR each Year and another Trustees daughter and Son-in Law did the same.

There were other notable people - who walked, ran, swam, baked, started up a Group Walk who paid £1 to walk with the group once a week and ended up always in a Cafe and raised over £2000. A teacher who developed PMR and her class raised money then the school adopted us. I could go on and on.

Believe me, the last 12 years have made a big difference - more GP's do know about GCA & PMR, there is now a Fast Track System in place in some hospitals, but an underfunded NHS, a shortage of Consultants, GP's and money to train staff on new equipment means not all are able to put it in place.

Rome was not built in a day, however I wanted you to know, that you can make a difference if you put your shoulders to the wheel and see what happens.

And every penny you can spare.................it is welcomed with open arms and a big many 😊😊😊😊😊😊😊😊😊😊

Well I think I have said enough and in a way, that is my rant over.

I leave you with this: which was launched in a Press Relase in August 2008: and you can still fill it in - costs nothing.

Furious Five’s Trans-Atlantic Hunt over Baby Boomers Mystery Illness

IS IT A FIRST? INTERNATIONAL ONLINE SURVEY LAUNCHED DEVISED BY PATIENTS FOR PATIENTS LOOKING FOR A CAUSE AND CURE FOR MYSTERY ILLNESSES PMR AND GCA (POLYMYALGIA RHEUMATICA AND GIANT CELL ARTERITIS)

Patients from the UK & USA have collaborated to devise and launch a Global Online Survey, which will provide data, free of charge, to Patients, Researchers and Medics. It could be the biggest online survey (quantisurve.com/cgi-bin/pmr...)

of its kind ever and may help reveal the cause(s) of two debilitating, life changing illnesses.

The full release is available via a PM with your email.

jinasc also known as Hel, and mrsK. Who had GCA and got out of her pram when she discovered that no progress had been made in 21years - how did I discover this, my Mother had both 21 years previously.

Good Grief asked me to edit this post and add the bit below.

To join or donate: pmrgca.co.uk/content/get_in...

uk.virginmoneygiving.com/ch...

67 Replies
oldestnewest
Hidden
HiddenModerator

Thanks for this jinasc. History always matters. Was going to pin but beaten to it. 😘

PMRpro
PMRproAmbassador
in reply to Hidden

:)

DorsetLady
DorsetLadyPMRGCAuk volunteer

“Who is she?”

A lovely, kind determined lady ....who although I’ve never met in person, I call a friend.....oh, and a fellow Viking as well.

Long may you ‘get out your pram’ ! Freyja x

Totally agree.😀👵🏻

Yellowbluebell
YellowbluebellAmbassador

This is a brill.post that hopefully let's everyone know what's gone on for us to be at this stage. Thanks for all the work done by you and the others YBB

Please edit your post to include an address where contributions can be mailed.

jinasc
jinasc
in reply to GOOD_GRIEF

Hi

This is the link to where all the details are:

pmrgca.co.uk/content/get_in...

To join or donate and much more.

Thank you for the' heads up' - I did think about it then thought perhaps not............but then when you responded I thought 'why not'

xxx

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to jinasc

Not sure how easy it is from overseas - I think Fran Benson was looking into this for another member recently.

PMRpro
PMRproAmbassador
in reply to DorsetLady

I'm told credit card works ...

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to PMRpro

That’s good then!

PMRpro
PMRproAmbassador
in reply to DorsetLady

Fingers crossed :)

Grammy80
Grammy80
in reply to PMRpro

They work...I managed to become a member and auto monthly donor through my credit card with Fran's help. Easy Peasy~!

jinasc
jinasc
in reply to Grammy80

Grammy80 that is lovely news to me and it also means that I did something with the 'rant'. Apart from letting off some steam.

I know how happy it will make you to know you are helping a charity in the UK...........so Thank you. Remember that everyone who uses this forum will benefit and thank you.

Fran also deserves a thank you, her work load was added to and never a complaint was heard. Onwards and Upwards ins small steps. 👍

Grammy80
Grammy80
in reply to jinasc

It really was important to me to be a contributing member...and to do a little something each month. It would be impossible for me to put a value on the impact all of you here have had on my journey...totally altered my course and continue to be my guide. There is nothing like this available in the states and I know every little bit helps.

Fran was absolutely wonderful in working with me to make it happen through

virginmoneygiving.com. Anyone could write to Fran to start the process.

You have been here for me....and I am grateful. xo💖

jinasc
jinasc
in reply to DorsetLady

Fran was involved, it was Constance who posts on here and wanted to make a donation and join. We did get around the problem and Constance is now a member.

Our Vice Chair set up a Paypal account, when we were selling the DVD, we found out when people looked on our website and wanted copies of the DVD and then the booklet. Yes, they went out to the USA,Canada, SA, NZ, Ceylon and every European Country.

Do not ask me how, I always left the Treasurer and the Vice Chair to deal with finance. 'I just asked, can we afford this'.

GOOD_GRIEF
GOOD_GRIEF
in reply to jinasc

Please have someone PM me with info for a donation from the US. I don't want most of the money eaten up by fees on either or both ends.

Omanain
Omanain
in reply to GOOD_GRIEF

I use PayPal to send money to my grand-daughter from the UK to Switzerland. The fees are very reasonable and the process oh so simple.

We just need the email address linked to the PMR/GCA PayPAL account.

Fran_Benson
Fran_BensonAdministrator
in reply to GOOD_GRIEF

Hi Good_Grief, I'm not working today but will message you tomorrow - thank you!

Can you also send US donation information to me? Thank you.

Fran_Benson
Fran_BensonAdministrator
in reply to bunnymom

Will do.

Thank you for this information. It’s helpful for those of us dropping in after the action and hard work to get things up and moving. I had hoped to do a fundraising event. Early this year but alas life had other plans for us.

PMRpro
PMRproAmbassador
in reply to Singr

Didn't stop Colonel Tom Moore ;)

Singr
Singr
in reply to PMRpro

Afraid my liveliehood had to come first. Self employed business just gradually gaining thin ground only to be thwarted again. Business shut down and don't qualify for govt help so still trying to pay for premises myself off brass tacks. I think I've done pretty well just to retain some students online to stop me going under and having to become my mums primary carer. Oh and there's my Masters Degree I'm supposed to be studying and turning in assignments for. In between flares and exhaustion due to the anxiety of keeping house, family, work, studies, health and sanity together. Love Tom Moore dearly and what a hero but hey, there are aspects of his life which are sorted and that he doesn't have to worry about like, income, pension and keeping a roof over his head. I think given the circumstances I've done pretty damn well actually. :-)

jinasc
jinasc
in reply to Singr

Hang on in there, this will pass and the phoenix will rise again and so will you. You are dealing with an auto-immune illness and are under terrific stress.

This situation reminds me of waiting till GCA went into remission.................I just hope it does not take 5 years like my GCA.

Take care and try to look after yourself..........xx

Singr
Singr
in reply to jinasc

Thanks for that. There is the song "Ready to rise again". Think it's by Gabrielle. I play that every day while getting up and getting on with it. They still don't know if GCA is part of my conditions because no one took notes about the headaches I was experiencing at the time I was asking to be tested for an auto immune condition. Apparently we won't know as I was put on 50mg right away when that on the ball locum spotted my blood works. We are 3 years into PMR and stuck at 8 mg just now but like yourself it's a long journey. Hope you are keeping well.

Can I just say that every time I see your name it puts me in mind of getting out the pink gin. :-) :-)

scats
scats
in reply to Singr

I always play "I get knocked down and I get up again" by Chumbawamba. It's beat helps me work out the anger and frustration. Good luck, you'll get through this.

Grammy80
Grammy80
in reply to scats

.....or Gloria Gaynor's I will Survive~! What a collection of tigers💗

Hidden
HiddenModerator
in reply to Grammy80

That was the song my late mum always said was mine...💪🌻

Grammy80
Grammy80
in reply to Hidden

Proud to share it....it can get me pumped up!! At times I've sung it pretty LOUD~!xo

PMRpro
PMRproAmbassador
in reply to Singr

Think anyone who did that is doing extremely well. My daughter is in the middle of an MSc and should be doing a prescribing module at present - but that means being at work and she is highly vulnerable (dodgy lungs and kidneys) so shielding. Deadline is September for getting onto the placement bit. She isn't a happy bunny.

Singr
Singr
in reply to PMRpro

Oh I’ll bet. It’s very frustrating. The whole education system has been affected.

Grammy80
Grammy80
in reply to PMRpro

I'm so sorry!

Constance13
Constance13
in reply to PMRpro

To be fair - he was in his own garden.

Many thanks for this - I am now a Trustee for PMRGCAuk, giving back to an amazing charity who have helped me so much in my PMR journey. Membership is vital for our sustainability so I hope more people will join us.

Thank you for this potted history which has filled in a few blanks for me. I'm one person who is very grateful for all the work that took place during those years when I had never heard of GCA or PMR and just blissfully assumed that I would never fall ill.

When I was finally diagnosed with both conditions in July 2017, after 4 months of mystery suffering, I was relieved to find that there were explanations for what was happening to me and that in the long-term I could expect to recover. I went home that afternoon, googled around and found this forum and as a result was led to the charity - further relief to encounter other people with the same conditions and to know that some medics were interested enough to research them. I pay a small standing order to the charity each month and hope to increase the amount when possible. I'm very impressed and deeply grateful that so much is achieved on such a tiny budget.

I tried to send a donation through the Virgin link, but when I tried to press the pay by card button, it kept sending me back to the gift aid area. I was caught in a constant cycle and couldn't get any further. I'm sure the fault is mine as I've had no end of difficulties with moving around complex IT sites.

Fran_Benson
Fran_BensonAdministrator
in reply to 43tripandskip

Do you want to message me and we'll see if we can sort it for you?

I'm too embarrassed to do this. You helped me out the other day and I'm grateful. I'll send a check directly to your office (I'll do it in the next couple of days). Thank you for your help

Fran_Benson
Fran_BensonAdministrator
in reply to 43tripandskip

Thank you. And please don't be embarassed, technology confounds the best of us :) Are you UK based? If so a cheque is great. But if you're US based then the fees are high to process...£10 the last time I asked :(

I gave it one last try on Virgin (and went through the donate button on the PMRGca Uk Bulletin), but it still goes into a circle and I keep getting the same page, So I won't be sending a donation via Virgin in future. I'm in the UK and will contact you soon

Fran_Benson
Fran_BensonAdministrator
in reply to 43tripandskip

Thank you 43tripandskip. I'll look into that. When you say you used the link from the bulletin do you mean from the website or from our newsletter, an email or something else? If I know where the problem is I might be able to do something about it for others. Fran

Hidden
HiddenModerator
in reply to Fran_Benson

It's the website. Top right corner. That's the one I tried and it just sends you in circles.

Fran_Benson
Fran_BensonAdministrator
in reply to Hidden

Yes I'm going to check the website too but if's somewhere else that tripandskip used I want to check the code is right there too.

It was on the PMRGCA content link

Fran_Benson
Fran_BensonAdministrator
in reply to 43tripandskip

Hi 43tripandskip and Poopadoopy - quick question for both of you. Do you know if you have an ad-blocker or privacy software on your pc/tablet (whatever you were using when you used the virgin money donate site )? If you do then that can cause problems.

I have one on my pc and I just made a donation through our donate button. However the process froze partway through: it told me what my donation was and what my message was but didn't go any further. It told me not to refresh or go back but there was nothing else to do. Then I disabled my privacy blocker and the page refreshed to allow me to input my credit card details and then everything went through fine.

Just thought I'd mention it because more people have these ad-blockers on their browsers and they do cause problems with paying for things, particularly on sites you haven't used before or don't use often.

(If you're not sure whether you have ad-blocker software you can check it out at this site ads-blocker.com/testing/ )

Fran

Hidden
HiddenModerator
in reply to Fran_Benson

Thanks Fran. Just the usual virus scanning but there could be a sneaky one. Will try again.

Yep. No pop up ads do could explain it. Will redo settings and donate. Thanks.

Managed a paypal donation. 👍

Fran_Benson
Fran_BensonAdministrator
in reply to Hidden

You star - thank you :)

Yes, A technician set me up with an ad blocker (AdBlock Plus). When I feel more energised, I'll have a go at unblocking it for the transaction. Thanks for your help

Fran_Benson
Fran_BensonAdministrator
in reply to 43tripandskip

Ah, I'm glad we seem to have uncovered the problem. When you're feeling up to it it is worth having a fiddle to let it know what sites you don't want it to work on - for example mine is set to not activate on Sainsburys website. If you ever have any problems paying for things online, it is often the ad-blocker just doing its job. Hope you feel better soon, Fran.

HeronNS
HeronNS
in reply to Fran_Benson

Sometimes simply using a different browser will sort these problems.

Thought you might like to know that I have experienced the improvements that have been made by your efforts.

My father was told he had PMR at least 20 years ago. When I moved in to look after him and Mum I was aware that his doctor had very little idea of what he was doing. He had a favourite phrase that I will always remember, "I think I have something else up my sleeve that might help..." He was groping in the dark and trying to keep Dad happy. This even included putting him on morphine.

When my brother was diagnosed with PMR about 8 years ago his treatment by the same practice was much better and last year when he developed GCA after 2 years in remission he was rushed to hospital as an emergency with the treatment team waiting for him when he arrived.

When I developed PMR myself I made sure to educate myself in the treatment I should be receiving after what I had seen with Dad, and found this forum. From what I have learnt here I was able to advise my brother, even though he was reluctant to listen. I have also managed to find a member of my doctors practice who was willing to listen and learn.

Although we have never met I think you will find that most of my family have benefitted a lot from what you and your charity have done and I welcome this chance on behalf of all of us to thank you for all you have done and to give you some evidence of what you have achieved.

Scats, that meeting on 14th March 2008 decided on aims and they have never changed:

pmrgca.co.uk/content/vision

Support first always.

Those people will be so pleased to see your post.

Thank you.

Fran_Benson
Fran_BensonAdministrator

Thank you for this jinasc. The charity, from its first inception, through the years to its current trustees, volunteers and countless helpers, has achieved a lot...and yet there is more to do. We rely on memberships and donations to help us and as jinasc so rightly says, we do it on a shoestring.

Every donation helps us to help someone with PMR or GCA. Whether that's here on the forum, on our helpline, through our information packs, campaigning for greater awareness, working with some of the leading experts in the fields of both conditions and so on.

If you can, please donate or join us. If you're outside of the UK, please message me and I can advise on the best way to pay (with the least fees). I may take a day or two to reply as I work Mondays, Tuesday morning and Thursdays. I sneaked onto the page today when I saw jinascs post :)

Here's the link to our membership page: pmrgca.co.uk/content/about-... or if you wish to donate, you can do it from that page too.

Hidden
HiddenModerator
in reply to Fran_Benson

There is something weird with. The virgin site. I had forgotten I tried a couple of weeks ago but it sent me in circles. I just thought it may be a glitch and had forgotten until the above reference.

jinasc
jinasc
in reply to Hidden

Yes and I thought it was just my mate?

Fran_Benson
Fran_BensonAdministrator
in reply to Hidden

I just tried it and made a donation using paypal. It worked fine although you do have to go through several pages to get to the end. It might have been a glitch or it might be something to do with paying by card which I'll need to look into. Have you tried again recently?

jinasc
jinasc
in reply to Fran_Benson

Fran this is your non-working day - sorry I spoiled it 🤦‍♀️🤦‍♀️ but you care.

I don't know and she is not well at present. Poopydoopy will know.

Hidden
HiddenModerator
in reply to Fran_Benson

I will try pay Pal ..I can't remember how I tried to pay...too much online shopping gone on ...shielding is bankrupting me. 🤣😂🤣

Grammy80
Grammy80
in reply to Hidden

Good heavens, isn't that the truth. I paid off my Visa...and have promised myself to only get cat food and litter delivered!😻😸Happy cat...happy life, I'm so glad Gus lets me live here, What a guy!!

I will definitely try to donate tomorrow. Thank you

Thank you for this. We have all benefited so much from this organisation it is imperative that we become members so that we can put a little back even if we don’t go on to specific donations.

Grammy80
Grammy80
in reply to Jackoh

It is impossible to put a value on what the forum has done for me and means to me~💗💗

It would really help if you could find a way to accept money from Forum members who don't live in the UK. Heaven knows I have tried and Fran has been so helpful, but it costs too much, apparently, to deposit even a sterling bank draft/ money order. etc.

That is wonderful !!! Just in case some of the other folks from the US don't realize, you can become a member with your US issue credit card...very, very simple to do. I had made contact with an individual who sent me to Fran Benson at fran@pmrgca.org.uk, and the rest was easy.

This forum gives to me every single day. I'd never heard of GCA and felt totally alone. You can become a member which helps support this incredible work they do, and you can even set up a regular monthly donation through your credit card. I get way more out of the forum than I do from my doctors~!! They both serve a purpose, but I cannot imagine how life would have if had I not had the support and input of this group.

It doesn't have to be a big donation....it all helps. xo 💗💗

I became ill with GCA in summer 2011 and I was helped so much by the NE group and ‘You’re not Alone’. You do feel so alone at the beginning when family and friends, with the best intentions, actually have no idea what the disease is, effects of Pred, emotional turmoil and the rest. The NE group forum was my absolute lifeline at that time and the members became my friends, several of whom I met over the years. It was jinsac who talked about ‘light at the end of the tunnel’, and of course there is. By 2014 I joined Club Zero and have now been well for nearly 6 years. So a big thank you to all my friends from these days, and I hope you are also now in better health. xxx

Grammy80
Grammy80
in reply to sara4

That's wonderful, Sara....so hopeful and encouraging to hear that!! xo

Thanks for sharing...

Thank you very much for this insight, very informative and makes me appreciate even more the commitment of you and others to helping and supporting us. It will be very helpful when telling others about the condition and the dedication of those who seek to lessen its impact in so many ways.

Thank you so much. 💐

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