Thank you to everyone who contributed to the rece... - LUPUS UK

LUPUS UK
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Thank you to everyone who contributed to the recent research study

Paul_Howard
Paul_HowardAdministrator

Hi everyone,

I want to say a massive THANK YOU to everyone who took the time to share their experiences about their journey to diagnosis and the level of support received from doctors.

Over 230 people completed the questionnaire which is a great response! The surveu is now closed, but we hope to do a larger scale questionnaire for more people in the New Year. If you have any feedback you would like to share, please contact MelanieSloan or email mas229@medschl.cam.ac.uk

3 Replies
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A huge THANK YOU to Mel and her team for doing such an amazing job! I know a few of my support group members completed the survey and are willing to be interviewed. We are very grateful to her for shining a light on so many important issues relating to lupus care. Thanks Mel! xx

I’m with Wendy‼️

CONGRATS to ALL involved, especially mel & her research team, paul and his team at LUK and EVERYONE here who participated‼️

And, yes please: I’m definitely up for being interviewed‼️

👏👏👏👏🌟🌟🌟🌟🌟💐💐💐💐💐 Coco

I'd like to reiterate Paul's thanks to everyone who completed the questionnaire. My research department has been so impressed with the level of engagement, desire to be involved and how detailed the responses were despite some very difficult stories to tell. Thank you for your courage in sharing these. You have given us so much to work with to put everyone's experiences together, raise awareness and all work together for improvements.

It's very important to us that this research study is not just about people with lupus and related CTDs but involves everybody deciding as a group on the focus of the research and that we reflect the true picture of people's experiences so we will be sharing the data and draft write ups with you all as soon as possible - your opinions are the most important.

Thank you so much to everyone who volunteered to be interviewed, we will be contacting some people (about 20) for interviewing over the next couple of months. We need to make sure we have a range of people (ages, experiences, disease type etc) and unfortunately can't interview everyone but if anyone has anything else to add, please do email me on mas229@medschl.cam.ac.uk and your opinions, experiences and quotes on your care etc will be added into the analysis. Many people have already emailed me and this is very helpful for getting the full picture of perceptions of level of medical support and hearing your diagnostic journeys and the impact of the disease on your lives.

If anyone has found sharing their story upsetting or, for the many who have written that they do not feel medically supported, please do contact Paul and Lupus UK for advice. Thank you and I'll be in touch soon with some of the early results!

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