Research to identify barriers to PMR diagnosis

[Fran_Benson]

We’re really excited to let you know about a new research project titled The Polymyalgia Paradox. We’re running this with the University of Leeds, and it's funded by NIHR, the National Institute for Health and Care Research. The project is investigating why low numbers of PMR patients are diagnosed in the north compared to the south of England.

Lucas Coutin joins PMRGCAuk as Northern Outreach Lead, to investigate the barriers to health in communities around Leeds over the next 18 months, whilst also spreading awareness of PMR.

One of the first things that Lucas will be doing, is contacting communities around Leeds to promote understanding of PMR and learn about experiences of accessing healthcare. To help convey the reality of living with PMR, we’d like to share lots of people’s experiences, from first symptoms of PMR to receiving a diagnosis. If you would like to share your story (anonymously) or find out more, please contact [e-mail]

He's primarily looking for stories within the UK, but not necessarily in the Leeds area (although Leeds would obviously be great too!)

Fran

[PMRpro Ambassador]

Any idea how far back? I was diagnosed - or rather, not diagnosed for 5 years - in the north of England!

[Fran_Benson Partner in reply to PMRpro]

Good question. I'm not sure. I've invited Lucas to join HealthUnlocked so he can answer questions. Hopefully he'll be along tomorrow to answer you..

[Lucas_Coutin in reply to PMRpro]

Hello! Thanks for your question - there's no restriction on how long ago you were diagnosed (or not) when it comes to sharing your experience. I'd be interested to hear from you

[PMRpro Ambassador in reply to Lucas_Coutin]

Hehe - you probably will, at length! Be careful what you wish for - Sarah will give you my background

[Charlie1boy]

Presumably it would be appropriate to send him my story, which I emailed to you recently?

Paddy

[Lucas_Coutin in reply to Charlie1boy]

Hi Paddy - I'll look into this! Would you be open to having a conversation with me so I can hear from you directly?

Lucas

[Charlie1boy in reply to Lucas_Coutin]

Yes absolutely Lucas. We don’t give phone numbers or email addresses on the Forum, but am happy to let you have these via the chat facility or via email. Fran will know my email address.

Paddy

[Lucas_Coutin in reply to Charlie1boy]

Thank you! I look forward to chatting. I'll speak to Fran and be in touch within a few weeks.

Lucas

[SheffieldJane]

It took me a while to negotiate the Fibromyalgia block before I got my diagnosis.

[Bcol]

Very happy to share my experience if he thinks it's relevant. Unlike many I guess you'd call mine a very positive one.

[PMRpro Ambassador in reply to Bcol]

Ah - but YOU have a good GP practice!!!!

[Bcol in reply to PMRpro]

That is very true, as my comments on a different post this morning showed. Suspect my involvement wouldn't help their research.

[PMRpro Ambassador in reply to Bcol]

Probably would providing you emphasise the role YOUR practice has played. That is part of the reason it is patchy.

[Bcol in reply to PMRpro]

Okydoky.

[Lucas_Coutin in reply to Bcol]

Certainly! Happy to hear you had a positive experience - it'd be great to get stories from both sides of the spectrum.

[Bcol in reply to Lucas_Coutin]

No problem, I'll sort something out.

[Zebedee44]

I recently met a lady from a small village in Fife, Scotland, where 5 people had been diagnosed with PMR, including herself. It made me wonder if it is environmental or a very astute GP.

[PMRpro Ambassador in reply to Zebedee44]

There are examples of such clusters that do suggest an environmental factor but that is known really - anything that stresses the immune system can be a trigger and some environmental factor may be the final straw. It is unlikely all the patients had identical previous histories though. Where was it - so I know not to move there, though I suppose the positive aspect is it has a ready-made support group!

[Katietee]

I am extremely surprised to read that low numbers of PMR patients are diagnosed in the North compared to the South of England and wondered if this information has been taken from the number of PMR patients being referred to hospitals in the North or if it is to do with the membership of PMRGCAuk? From my personal point of view, I was diagnosed with PMR in May 2014, 9 years ago and, while I had never heard of it before then, I was absolutely surprised to hear how many other people around suffered from PMR/GCA. I regularly attended the quarterly meetings of PMR/GCAuk in Gateshead and understood that the average paid-up membership at that time was 230-250 people, including the Middlesbrough Branch. Every quarterly meeting was attended by between 20-30 members in Gateshead, and I understand around the same number attended in Middlesbrough. I believe the North East were the first Group to become a Registered Charity and many of us members were devastated when the Group disbanded towards the end of 2018 due to ill feeling within the group. I have noted Lucas's email address and will contact him direct with information I, and a few others, have about PMR/GCA in the North East.

[PMRpro Ambassador in reply to Katietee]

No, nothing to do with HU, I think it is from the Keele University group who do large scale analyses of GP and hospital data.

The NE group was a the first PMRGCA registered charity in England - the Scottish group was already in existence and provided a lot of support to Mavis Smith when she was setting things up.