COVID-19 and shielding: Experiences of UK patients with lupus and related diseases - Research Paper - NOW PUBLISHED

[Chanpreet_Walia]

Hi everyone,

We are really pleased to announce that another important research paper involving some of our HealthUnlocked community members has been published!

The paper “COVID-19 and shielding: Experiences of UK patients with lupus and related diseases” led by Melanie Sloan and funded by LUPUS UK is now available to read at academic.oup.com/rheumap/ad...

If you haven’t already read the research paper “The impact of the COVID-19 pandemic on the medical care and healthcare-behaviour of patients with lupus and other systemic autoimmune diseases: a mixed methods longitudinal study”, you can read this at doi.org/10.1093/rap/rkaa072

These papers wouldn’t have been possible without the amazing work from Melanie Sloan and all the contributors :).

[whisperit]

Thanks Chanpreet,

These papers seem to be making a real impact in the rheumatology world. It would be great if everyone could tweet or email this round - especially to our rheumy teams!

😉

[eekt]

Just overwhelmed Chanpreet, this is so timely and the quotes so moving...seems we're in the business of moving mountains and this research might be the tap to break the glacier ice...I'm thinking the squirrel in Ice Age here (youtube.com/watch?v=e8ur4NR...(Not working as expected?)

👍 xxx

[Freckle1000]

Well done to Melanie once again. More amazing research !

[MelanieSloan]

Thank you so much to everyone in the LISTEN study and on the forum for making this research possible. To those who were actively involved and EVERYONE here who inspires us to all work together to raise awareness and improve care - thank you!

[Freckle1000]

I just had a second read. From an Australian perspective - where - at least for the moment the pandemic isn't weighing heavily apon us anymore - and with a vaccine hopefully around the corner - this reads not only as an amazing and comprehensive piece of research - but also as a very clear and honest historical document. I think it will survive the test of time and be a great medical/sociological resource in years to come. Reading it also gave me a timely reminder of where I sit in the patient classification world - healthcare avoidant -( but forcing myself anyway ) - and as one participant said - 'Things have to be pretty severe for me to report a symptom'.......... and the grinding feeling that I'm less important than a normally healthy person. Disabled - time consuming - so why waste too much time on her.

I saw our lockdowns as a rest from the trauma of seeking health care - and took it as an opportunity to feel like a normal human being for once - and as some stated - the competition for health care reduced. My GP barely had any patients. It was such a calm period for me.

Unfortunately a Doctor getting back to me in 24 hours is still a dream - but If this one thing could be implemented - I'd be less disabled right now.

I'd love to know why I'm consistently undervalued as a human being by medical staff and my disease consistently underestimated. I've seen relatively new online medical tutorials that explain Lupus as not much more than a rash and a bit of arthritis ?

[MelanieSloan in reply to Freckle1000]

Thanks for the feedback Freckle, really value your opinion.

Hopefully by all working together to raise awareness of the depth of trauma in so many, we will see improvements.