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Research Survey – Share about your disease, journey to diagnosis and the level of support you feel you receive/received from doctors

***This survey is now closed. Thank you to everyone who took part. You can read more about the future of this project at healthunlocked.com/lupusuk/... ***

LUPUS UK are working with researchers at Cambridge University, a group of people living with lupus, and some of the top lupus specialist doctors in the country, to carry out patient-centred research looking into the experiences of those affected by lupus. We are doing this so we can better understand the feelings you have about diagnosis/ misdiagnosis and how well supported you feel by your doctors. This information will help us to raise awareness and make improvements that are most important to you.

Please click on the link for more information about the study - dropbox.com/s/37c4g6oyf3pwu...

To take part you just need to fill in a questionnaire and a select few people will be contacted to be interviewed/asked further questions (as long as they are happy to do so). All questionnaires and answers will be anonymised and your medical team will not know you’ve been part of the study.

If you have any questions, Melanie Sloan from Cambridge University, is the researcher coordinating this study, so please feel free to email her at mas229@medschl.cam.ac.uk. She has lupus herself and is one of our community members so will be very understanding and would love to hear all your experiences.

You can fill in the online questionnaire at cambridge.eu.qualtrics.com/...

If you would prefer completing the questionnaire by hand, Melanie will be more than happy to send you one if you email her your postal address.

58 Replies
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As one who is currently 'between GPs' due to my attempts to make my named GP stopping writing off everything I say as 'health anxiety' - despite the positive ANA/dsDNA - this research is DEEPLY welcome 🙌 🙌 🙌 XOX

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Hi eekt, I'm sorry you're going through this - it sounds as though you might be my twin sadly!

I hate the fact that my GP has dismissed me for so long with health anxiety.

Take care xx

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Happykins, delightful name! 😁 We may have thousands of twins on this forum, which is why this research is important! 💪🏼 LUK says the average time to SLE diagnosis is 7 YEARS (so I was only slightly longer at 8-and-a-half)

It's a horrible predicament to be in, since GPs will likely be first port of call if obscure flare symptoms come along: 'see a doctor if you feel unwell' my Rheumy said at diagnosis! 😅 xxx

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15 years :'( xx

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OMG so sorry, that's being robbed of a huge chunk of your life XOX

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Well better late than never :) xx

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Thanks Eekt, I really hope you find a good GP soon.

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Thanks Paul,

Great that LupusUK has been fighting so hard for our views and experiences to influence the care we get. And with a properly authoritative research programme too.

Hope lots of people go ahead and complete the questionairre x

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Thanks whisperit, we hope to get lots of questionnaires completed. You do a brilliant job on here helping everyone understand the diseases (and changing diagnosis sometimes!) and trying to come to terms with it all.

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Kind of you to say so, MelanieSloan. Good luck with this research x

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Completed, absolutely brilliant questions, really really appreciate this research.

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Thanks very much. If you have any suggestions for this study or future research please let me know!

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YAAAAY Melanie & Paul + THANK YOU to you + ALL of your colleagues involved in this IMPORTANT & exciting 🌟🌟🌟🌟🌟 project

💐💐💐💐👏👏👏👏 Coco

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Thanks! It's actually you, whisperit and the others on here who have inspired this research through sharing your experiences and helping others so much. We hope to share these with the clinicians and policy makers and help ensure the positive and negative experiences are publicised and learnt from for the future.

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Oh Gosh melanie...to know we’re all inspiring this research goes A LONG WAY towards turning this ordeal we live day in/day out into something redeeming & forward looking - in a truly constructive way.

You & your colleagues are doing the hard work though: pulling this project together, getting it approved & off the ground, considering contributions, assessing & collating results, getting the conclusions out there...and meanwhile you too are grappling with this incorrigible illness! Sending you ALL my gratitude & love 🍀😘🍀😘🍀😘 Coco

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Thanks Coco but it's actually YOU all doing most of the hard work, sharing difficult experiences and providing so much wisdom and knowledge which combined with the great work of Paul, Chanpreet and Lupus UK staff makes such a difference.

We're just putting all the experiences together to hopefully ensure that clinicians can learn from all of us - the patients!

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WHAT A TEAM! 🌟🌟🌟🌟🌟👏👏👏👏👏

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Fantastic. Completed.👍

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Thank you!

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I have filled out the questionnaire.I really hope that this research helps My own diagnosis took years four referrals and five rheumatologists and during the wait to get treatment I suffered a lot got more and more ill and had to give up my career.I really hope looking at this will make things better in the future

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Thanks Jane, so sorry your diagnostic journey was a long and tough one. Hopefully we can all work together to raise awareness and make improvements for the future.

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I've completed the questionnaire although my journey to diagnosis was very brief. I've been lucky in many ways but I have listed some things that are issues for me. Many thsnks

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Thank you! It's very useful to hear from those of you with quick diagnoses too as there may be learning points as to why it's quicker in some cases. Any suggestions let me know

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I don’t know why mine was so quick. I think it had a lot to do with my very ‘matter of fact’ attitude, I didn’t want to be there, I wasn’t desperate for a dx because I just ‘knew’ I had RA & had diagnosed myself with it some years before. I’d never even heard of Lupus. I had some red swollen finger joints, splinter haemorrhages, malar rash, low neutrophils, lymphocytes & complement. My rheumy must have been on the ball though coz she treated me at my very first appt. Ive been very lucky xx

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I LOVE the sound of your rheumy, Clare !

And am identifying with your reply,, cause my original lupus diagnosis in 1954 was cause my mother was horrified by the rash i’d sprouted and took me to a shrewd east coast USA medic. Of course, i hadn’t a clue there was anything at stake! And the doctors + my parents never told me it was lupus that was making my childhood so “sickly”. Back then, Lupus labs were relatively basic. But, by then, doctors had been diagnosing & treating lupus for centuries, as best they could...and research was ongoing

Next I moved to the UK at 21 without my health records. The NHS does it’s best to keep me alive in emergencies & slow my gradual multisystem debilitation. I sink deeper into depression

Fast forward 40+ years and finally i’m being rediagnosed all over again based on history + physical exam + lab results: achieving this rediagnosis involved 30+ years of health system Occam’s Razoring, stonewalling & gaslighting..i too had never heard of lupus!

XOXO

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You have had the longest journey imaginable and are testament to my Rheumy nurse’s aim for tight control to minimise disease progression.

Despite my immediate dx and intervention, I was then ‘chronically under treated’ until 2012 when I saw a new (my current) rheumy. I had already decided that I would never see my original rheumy again after some counter-productive appointments but my plan was to go it alone. Lupus, however, doesn’t follow plans . . . Xx

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Gosh...this is it: we always have be ready to be proactive...in effect, lupus IS our life’s work....OXO

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There was a Lupus UK survey of when folks first heard of lupus?...and for the majority, it was at diagnosis ! Must track it down* 🧐

Yours is a remarkable tale of survival in the face of adversity, not just through illness, but decades of psychological and emotional abuse by the healthcare system too...hats off to you, others (eg me! 🤪) might have crumpled 🏆🥇☄️💥🌟 XOX

*https://www.lupusuk.org.uk/lupus-awareness-2018/when-did-you-first-hear-about-lupus-chart/

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THANKS eekt! This is a great survey: EYE OPENING! YAAAAY LUK for organising it & everyone for taking part

You’re v good to me: REALLY we’re all remarjable survivers...everything is so stacked against us, everywhichway. Indeed I was hanging on by a thread emotionally & physically in 2011when first discovered lupus & my infancy diagnosis + joined LUK - AND began to feel my way into understanding immune dysfunction/connective tissue disorder & my versions of both...had it not been for the generosity, solidarity, info sharing & downright kindness here & in my LUK local support group, i simply would have crumpled. Am so glad you found us eekt...try not to let the b******s get you down...we’re by your side

🤝 ✊🤞✌️❤️🍀

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I can't thank LUK, MelanieSloan, this forum, and everyone on it enough: I'd be mad as a hatter without you all (eh,hm..madder than 🤪) 💪💪💪 xxx

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Me too: FOR SURE 🤣🤣🤣🤣XOXO

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Thank you very much for all the questionnaires completed so far! Please note we are very interested to hear from the whole HealthUnlocked Lupus UK community which includes those of you with other diagnoses than lupus and those who are still in the diagnostic uncertainty stage. The aim is to look for common experiences to raise awareness and to enable the doctors and policy makers to understand the impact of our experiences of the disease, the diagnostic journey and relationships with clinicians to improve the situation for current and future patients. Please complete the questionnaire; if anyone has any questions, would like to share more about their experience or has any suggestions for this or future research, I would very much like to hear from you on mas229@medschl.cam.ac.uk. Thank you!

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Thank you for the opportunity to take part in this.

I feel as though I've got a lot off my chest :)

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Thank you very much for completing. One of the interventions we are looking at for people who have had bad experiences, especially those with the psychological/mental health/anxiety type misdiagnoses, is for much more medical support and time to talk about the continued impact and possible damage from these misdiagnosis. I really hope you have good medical care now?

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That would be great MelanieSloan.

At the moment it's particularly bad from my GP surgery.

I'm overdue an appointment with the rheumatologist.

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Completed! I hope all the information you gather goes towards helping those currently undiagnosed and improves care for those of us who are!

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Thanks very much - we very much hope it will improve the situation

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Thanks Paul and Melanie for the opportunity to participate. It’s nice to be “heard”. The medical community and patients will benefit from more understanding of the impact of this and related diseases

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Thanks very much for completing the questionnaire!

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Dunnit. Fun reading for Ms Melanie Sloane. Thanks so much for undertaking this 🦹‍♀️🦸‍♀️🤓😎

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Thanks twitchy, the clinicians have a lot to learn from you!

If you can share the link with your other groups, that would be great. It would be interesting to see how many on the FND site have some of these clear autoimmune indicators?

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You could follow and post Your research project on FND Hope HU yourself for this purpose only Melanie. I’ve unfollowed and not going to follow or post because I was made to feel bad there. So, despite having a functional overlay (mis?)diagnosis hanging over me presently in letter form ie on my medical records - I felt unwelcome amongst those who have this as their main “diagnosis”. 🤷🏼‍♀️🙄

But I use a great closed online magazine FB community for Rare Conditions so will definitely share it there!😊

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That's a shame you were made to feel unwelcome there. That's the advantage of the Lupus UK forum, very supportive and welcoming to everyone.

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Couldn’t agree more re this lovely welcoming community. There appear to be some very “singed” souls on there so I’m sure it would do no harm just to post if you want them to respond.

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Please all complete this questionnaire (whether your current diagnosis is lupus, UCTD, any other connective disease/fibro/unsure/ awaiting diagnosis etc, we are interested to hear from everybody on this forum) - the more we receive, the more impact the patient view can have!

Thanks very much to those that have already completed it. Any problems with accessing it or if you feel it needs improving to reflect your experiences, please let me know.

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YAAAAY: just completed it! SO EASY to complete, fun even! VVVVV accessible - so considerately + cleverly designed....i’ve never done such a well composed questionnaire...and 🤷🏼‍♀️ i have become nearly phobic about completing questionnaires/forms, after a lifetime of having to do badly designed DOWNRIGHT horrid ones! 💐💐💐💐💐💐💐💐💐💐💐💐💐💐💐💐💐XOXO

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Hello. I completed the survey last night, was too tired really when I started. So today I have sent poor Mel a very long additional letter! Sorry Mel! I think everyone should take part in this. Part of the issue with the difference in lupus care across the UK, is that we haven't had the chance to make our voice heard but with the help of survey's like this, we can all have our say. And this is an amazing thing to be able to do and hopefully will make the right people sit up and listen - at last! We all need access to the same level of care. So a very big thank you for everyone involved! I have encouraged all of my support group to take part. I am happy to help however I can. Wendy xx

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Please don't apologise for the extra information Wendy, that's exactly what we need so we can learn from everyone's experiences. So sorry you're all experiencing this terrible situation in S Wales; hopefully by raising awareness in as many ways as possible, improvements will happen.

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Survey completed...brilliantly presented, thank you for this terrific opportunity.

Love LUPUS UK HU forum 💛

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Thank you very much for completing the survey!

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We have reached 150 surveys completed! Thank you very much to everyone for sharing their experiences and if you haven't yet, please complete if you're happy to do so. The combined information is already looking very relevant to help us all (and the clinicians) understand how common many experiences are.

We have over 160 people that started the questionnaire but stopped at the consent page. If this was you, it would be very helpful to find out why and if there is anything we can do to make it easier. For example, were the number of consent questions daunting or not clear? Did you feel you couldn't take part because you didn't have a clear diagnosis etc? (we are very interested to receive questionnaires from people in the diagnostic uncertainty stage too). Please let me know on here or mas229@medschl.cam.ac.uk if there are any improvements so we can make it easier for next time. If you stopped first time but are happy to continue and feeling well enough, if you click on the link Paul has provided, you can either go back to where you left or start again.

Thank you very much!

Melanie

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Hi Melanie! The consents page was a bit - uh-o - like signing up to a broadband provider at first glance, but then reading through the questions, it was clear it was about protecting confidentiality...and it was such a release going through the questionnaire, I'd happily do it again 😋 xxx

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Thanks Eekt, glad you found it helpful and thanks for the useful feedback about the consent page. Some studies with online questionnaires just have one consent box to click (or some don't even take consent) so we will look into shortening the number of consent questions for next time. We like respondents to be fully informed but also don't want it to be too long and off-putting!

See Paul's pinned post if anyone hasn't had time to complete yet - we value surveys completed from everyone on this forum. Someone asked if it was just British people with lupus we wanted to complete the survey and no, definitely not, we are interested in the opinions and experiences of ALL members of this forum please.

Thank you!

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Sorry Paul this post is not about my diagnostic journey & level of support. I noticed that you had read about the prostate post that I started ‘ wondered if you had any good ideas about how the information of the 2 types of prostate cancer can be disseminated to as many Drs & the general public as possible. It would help save so many men’s lives

Thank you

Suzee (Melbourne -Girl)

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Hi Melbourne-Girl. I would imagine that Prostate Cancer UK are doing a lot of work to help raise awareness of this amongst the medical profession and public? prostatecanceruk.org/

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Unfortunately there is one amazing Urology Dr who upskills Drs (Urology Drs) when he can on weekends but there is a huge deficit in the other Specialists & GP’s & a bigger one still with the general population and lots of men are not getting treated early enough because most people still think there is only the slow growing kind of Prostate Cancer so many men are still dying from this. I know that you must be extremely busy with all of the other great work that you do I just thought that you may have had a couple of ideas because ofbthings that you have done to help raise awareness with lupus etc

Thank you for your time

M.G.

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Hi Melbourne-Girl. I'm afraid that I don't really have much to suggest. This is very similar to the problem we have with educating GPs and rheumatologists about lupus. There are so many diseases to learn about that we are often 'competing' against. I know even the renowned Prof Graham Hughes has struggled to get attendance from GPs for seminars about lupus and APS because the doctors say they would find it more helpful to use their time to attend courses about diseases they see more often such as diabetes, heart disease and mental illness.

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That’s sad, I think that you & your committee do an incredible job. If there is any way I can be of assisting on my better days please let me know.

I wrote you an email & then lost it (foggy).

It was about how much I enjoy cartoons, paintings, drawings & philosophical pieces when they come up on your posts.

I wondered (if it were vetted) if it was possible to put 1 piece of music and 2 songs that are well spaced out on this forum as I know how much it Takes my mind off my disease states when I see what is written as mentioned above.

They are very different pieces and not very long.

The first one came out as beautiful musical piece when the Civil War finished in America and I am sure many of us have forbears that immigrated to America. I know there were particularly a lot of English, Irish, Welch & Scott’s who migrated. This was as well as some Australians, French etc and was during the rule of American’s president Abraham Lincoln. It is music where varying pipes take the lead and a little piano . It’s amazing music and it goes right to the heart, it is very haunting and reminds me of much of you Celtic music.

The next one is a beautiful love song accompanied by a Chopin score in the time when UK descendants were setting up as aristocracy, the middle class and the poor. It is a most beautiful love song and it surprised me that it was accompanied by some of Chopin’s music. This was in early Australia (again with many of your descendants).

The third one is a song sung at a Tribute Night given in America to Willie Nelson who is famous for writing songs and composing music and willingly sharing his teachings with others. He is also a country & Western singer and his voice is mediocre, although you forget that when he plays his guitar (one of the best in the world) and his passion shines out. He has been asked by many singers to write a song for them & many have become world hits. Conversely he has also written many famous songs that don’t suit his voice & he approaches other world singers who could do it justice.

Anyway just wondered what you thought of the idea & if it were possible I could send each one over time to be vetted by someone of your choosing.

I am sure that you would very aware of having such things on your post and the positive effect that it has on the readers. The latest one I saw was Eyores Mr Tickle & it made me laugh & forget more serious things for a time.

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