I am very pleased to announce that a paper from the research study conducted within this forum has now been published and is available to read online.
"Is it me? The impact of patient-physician interactions on lupus patients’ psychological wellbeing, cognitions, and healthcare-seeking behaviour."
You can access the abstract by following this link academic.oup.com/rheumap/ar... and the full paper is available, free to read, by clicking the "PDF" button at the bottom.
We are extremely grateful for everyone who took park in this research study. Loads of you shared your experiences which has helped the researchers to identify common themes.
On behalf of LUPUS UK I would like to thank MelanieSloan who brought this research proposal to the charity and then led the project superbly. She has done incredibly well to bring onboard well-renowned lupus specialists and ensure the project was patient-led and patient-focused throughout.
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Paul_Howard
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It would be nice to see a parallel paper for all a/i disorders. It is absolutely understandable that patients feel dismissed in lupus where it IS a very complex diagnosis and oh so often londwinded. But we see much the same in many patients with PMR and GCA which you would think were relatively straightforward - but they aren't.
Have you got as far as the Abstract by clicking on the blue link in the post and again in the HU pop-up warning you you are leaving the HU site?
Above the title Abstract is a line starting with a sort of Isle of Man icon and PDF next to it - I clicked on that and the PDF version comes up. It is very slow to load - big file, 26 pages!
We should have a summary of the findings from the paper in the winter 2020 edition of the magazine. Due to the limit on article length we won't be able to feature the paper in full.
If anyone could Tweet or Facebook the article, that would be great too. The more Tweets etc it gets, the higher the altmetric score, which is a good thing I think (though I cant remember exactly why!).
Brilliant! I have just sat and read all of the survey results. This is so needed, I just hope the Drs that need to improve will read it. Thank you to Lupus UK and everyone that was involved, it's a huge amount of work. With the long journey I have had and my daughter already nearly 2 years on hers (16)and got no where yet for her even with family history. I would like to think her journey will be easier. I am now fighting for both of us. This type of study has got to help now and for future suffers.😁
Thank you all so much, not just to everyone directly involved in this study as participants or as part of the amazing patient-research team, but to the whole community. It is often the discussions on here that give us the best ideas for what to research and how to articulate the community voice.
Please do all let us know your priorities for the next research ideas. We are currently looking at how coronavirus has impacted the medical care and health of those of us with lupus and autoimmune diseases, especially regarding the shielding classifications and communications.
All the research carried out by this research team is aimed at involving the people who know best - YOU ALL! - as much as possible, so please do give your views at any stage, either on here so we can all discuss, or directly to my email - mas229@medschl.cam.ac.uk
Our initial research was largely lupus and other systemic autoimmune rheumatic diseases, but there is so much overlap in experiences of people with other AI diseases, that we would like to be as inclusive as possible in future research. We are always open to suggestions!
My home forum is PMRGCAuk - so vasculitis. But the diagnosis experience is sometimes horrendous because of the fixations many doctors have rooted in old information. Took me 5 years to get a diagnosis (though to be fair I was seeing the wrong GP, the lady on maty leave would have been ideal ) and even then the local rheumy didn't agree, wanted it to be anything else! We are still getting members who have lost their sight because of the unequal struggle with ignorance.
Yes, it all seems very similar in that fight for understanding, regardless of exact disease type. Definitely best to all work together to raise awareness; I think RAIRDA is doing a good job with this currently.
My only regret is the same as PMRpro’s. Of course I understand that, with Lupus UK as the charity supporting your research, it is inevitably focussed on Lupus and UCTD. However, as I have neither I think I can say, quite impartially, that people with other systemic autoimmune diseases such as me fare just as badly - if not worse. In fact we often have to tell friends and family and even GPs, that we have Lupus or Lupus-like, just to see eyes wake with recognition.
And I don’t think RA and Lupus should be the umbrella headings for all full blown CTDs really. I’m not happy that, just because my own rheumatic diseases are hard to pronounce and rarer than Lupus, I feel obligated to call them Lupus in order to wake my doctors up!
So I would urge RAIRDA- or even BSR and all related small charities - to get behind your research too and pull together as one so that all of us can use this amazing resource without having to feel like imposters - just because we have equally serious but even more misunderstood systemic autoimmune diseases.
And this comment is not intended to read as a criticism of you MelanieSloan or of Paul Howard. I think you’ve done and are doing amazing work.
But in this new Covid era it would be great to see all these small charities come together so that we “other” RAD patients are able to use this research to galvanise our own doctors and also colleagues, friends and families too.
So come on VUK and SRUK, BSSA and NRAS! Let’s see all pull together perhaps to support/ get behind the next stage of research?
Yes definitely, the more people working together the better, patients, researchers, charities and doctors! I agree it's even tougher for people with the even rarer systemic autoimmune diseases. Our problem to date with including them in research is access. LUPUS UK and the lupus sufferers facebook administrators are brilliant at allowing (and helping!) us to recruit study participants from their members, but I've previously asked the Sjogren's and UCTD FB group administrators and they have a blanket rule against any study recruitment. This is a shame as the research is entirely to benefit their members - they are now sharing the research on their pages and may be more amenable in future.
We did include sjogrens, overlap, systemic sclerosis and UCTD in our recent LISTEN study, but mostly lupus patients signed up.
If anyone knows ways of accessing people with the rarer systemic autoimmune diseases please do let me know and we will try to include in the next study
Yes I thought as much. I think SRUK would be very amenable though and I did share your paper with Scleroderma and a multiple autoimmune syndrome group and many related strongly - especially the SRUK ones. Perhaps PMRpro can share on Vasculitis UK?
The BSSA is too small a charity and they haven’t the manpower (or womanpower!) to admin a FB or HU apparently so no online social network presence at all. Which is such a shame as the Sjögren’s Foundation in US is brilliantly proactive.
I also found a small fibre neuropathy FB group and shared it with them and they responded very positively - someone saying they were aware of your work and very impressed - asking how could they get involved if they don’t have Lupus - but like many, have Sjögren’s. Most have taken years to get a diagnosis😞😒
Thank you for your feedback. We actually have a RAIRDA meeting this week and I have requested that campaigns for reducing diagnostic delays be added to the agenda because it is something that is shared by all these conditions. NASS have recently launched a fantastic campaign about this and we'd like to do something similar.
Thanks CecilyParsley, it is entirely people like you and all the great people here, the participants and patient representatives on these studies that are so passionate to improve things for future patients, that come up with most of the ideas - I just write them down!
I am going to send a copy to my new Rheumatologist as I am certain he is actually likely to read it given my long conversation with him. You did far more than write it down. You engaged with us, encouraged and fostered support groups within the study and you know personally the difficulties patients face. It was so very much appreciated xx
Thankyou Melanie and Paul and to the wonderful Lupus UK community for creating a document that so brilliantly sum's up our experiences. So much hard work and dedication to get things just right. - I love the title too
: )
You produced a document that I feel I could safely hand over to any Doctor. It would be near impossible for any of them to read it without empathy and clear understanding.
After suffering in silence and feeling powerless for so many years........ I just cant find the words to express how wonderful it felt to read the final draft. It was so cathartic and such a relief I cried.
A huge thank you to you both Melanie and Paul for making this important research happen!. Fingers crossed it will help to change doctors attitudes for us!. Xx
Gosh the disparity in the care received is astonishing, but brilliant paper really highlighing the struggle and lots of positivity too. I just hope the disbelieving/dismissing Drs read it and see themselves. I've thankfully got a lovely rhem now but you never lose that fear of other medics.
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) and even then the local rheumy didn't agree, wanted it to be anything else! We are still getting members who have lost their sight because of the unequal struggle with ignorance.
Investigating gut health in SLE - findings from a LUPUS UK funded study
