LUPUS UK Community Forum Research Papers - Lupus Awareness Month

[Chanpreet_Walia]

As part of Lupus Awareness Month, we would like to highlight two important patient-focused research papers led superbly by Melanie Sloan and funded by LUPUS UK.

Both papers are available to read online through an open-access journal;

"Medically explained symptoms: a mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases" - academic.oup.com/rheumap/ar...

"Is it me? The impact of patient-physician interactions on lupus patients’ psychological wellbeing, cognitions, and healthcare-seeking behaviour." -academic.oup.com/rheumap/ar...

We are pleased to announce that a third forum paper has been agreed for publishing and will be made available to read online soon!

[Kevin53]

Brilliant. Best wishes Kevin

[EOLHPC]

🤩👏👏👏👏👏 THANKS TO ALL INVOLVED ‼️

🍀❤️🍀❤️🍀❤️🍀 Coco

[Willow1414]

Hi Chanpreet

Quite an eye opening but if research .

I wonder at some point a documentary of awareness is needed .

🦋❤️

[eekt in reply to Willow1414]

There was an All-Party Political Group inquiry into Endometriosis care with the results out just a few days ago:

bbc.co.uk/news/uk-54513072

😲 'It found an average wait for a diagnosis was eight years and that has not improved in more than a decade.'

😲 'Nadine Dorries, minister for women's health said awareness was increasing but there was still a long way to go.'

😲 '58% of people visited the GP more than 10 times before diagnosis and 53% went to A&E with symptoms before diagnosis.'

😲 'The majority of people also told MPs their mental health, education and careers had been damaged by the condition.'

😲 'About 90% said they would have liked access to psychological support but were never offered it, with 35% having a reduced income due to (it)

😲 'There is no cure for the condition..'

😲 '...life-changing. The pain can be so varied but at its worst, it is crippling to the point that the strongest painkillers only seem to make me drowsy'

😲 'GPs ask me to explain to them what (it) is, because they don't know. They're the ones who are meant to help.'

😲 ' "The wait time for diagnosis is so long that in that time it's spreading and doing more damage the longer it is left untreated... We can't carry on like this." '

😲 '....had to change her doctor four times before she was listened to'

I've no idea how the All-Party Political Group inquiry came about, but maybe we should lobby for one ? xxx

[Chanpreet_Walia LUPUS UK in reply to eekt]

Thank you, Willow1414 , I think that is a great idea and is something which we can look to do in the future. It would be have a documentary to share especially around World Lupus Day and Lupus Awareness Month.

Thanks for the link eekt , this is very helpful and I will look into this!