Learn about an exciting research study involving the LUPUS UK Community Forum!

[Paul_Howard]

Hi everyone,

LUPUS UK are working with researchers at Cambridge University and patient groups to look more deeply at your views and experiences. This is to help raise awareness and highlight common difficulties including unmet medical and emotional needs with the hope of improving recognition and support.

Many of you kindly completed the online questionnaire about your journey to diagnosis and medical experiences. Cambridge University researchers have been interviewing some of you in more depth about your experiences and MelanieSloan from Cambridge will feedback to you all on the forum with some early findings soon.

We have decided that a very good way to raise awareness and include even more of the group's views is to look at posts and responses on this forum from over the past few years and analyse them for common themes. By publishing these (all anonymously) in a scientific journal (and possibly LUPUS UK leaflets), your combined views and experiences will reach a much wider audience and provide information about what YOU feel are the most important parts/challenges of living with lupus and other related diseases.

We are going to be asking some questions over the next few weeks about your experiences for the research study. Please feel free to answer as you would any other post; we will only use any quotes you have provided with your direct permission and they will be anonymised. Please follow the link below for a detailed information sheet.

lupusuk.org.uk/wp-content/u...

Question 1: What makes a positive/negative medical appointment? - healthunlocked.com/lupusuk/...

Question 2: Can you describe how fatigue feels and the impact it has?

healthunlocked.com/lupusuk/...

Question 3: Were you told it was "in your head"?

healthunlocked.com/lupusuk/...

Question Four: Your thoughts about fibromyalgia diagnoses.

healthunlocked.com/lupusuk/....

Question 5 - Your experience(s) of inequality

healthunlocked.com/lupusuk/...

[Hidden]

hurrah!!

[misty14]

This is fantastic Paul.

[fabwheelie]

great news

[suzannah16]

[EOLHPC]

👍👍👍👍YAAAAY to EVERYONE involved in this crucial & deeply meaningful 🌟🌟🌟🌟🌟project👏👏👏👏

And THANKS to EVERYONE taking part: forum friends, Lupus UK, Melanie & her research team 💐💐💐💐💐

And HURRAH: this project is going to help EVERYONE in MANY ways...patients, their families & colleagues, friends, doctors, nurses & more 🤝✌️🤗

🍀❤️🍀❤️Coco

PS if we “Follow” you (Paul), & Melanie, will we be sure to get HealthUnlocked email alerts when these special “questions” related to this project are posted here?

[DJK99]

This is going to be hugely helpful to so many Paul. Thanks to all involved!

[Foggyme]

This is fantastic Paul. Will watch out for the upcoming questions...and respond 😉😀

[Paloma25]

Would the researchers like to hear from those of us in other countries, or are they gathering data just for the UK? I always feel uncertain about whether to participate in your questionnaires and surveys because of being in the U.S. Thanks, by the way, to all the UK members for being so hospitable.

[Paul_Howard Partner LUPUS UK in reply to Paloma25]

Hi Paloma25 ,

This research is looking at our community forum as a whole, so we would welcome contributions from members wherever they live. Thank you.

[happytulip]

Jumping for joy (not literally, obviously as that would hurt my swollen knees)!

[happytulip]

I would love to send the findings to the many consultants who could learn that "its all in your head" is not an appropriate response.

[Lisalou19 in reply to happytulip]

This comment deserves a love button!!!!!!

[eekt in reply to happytulip]

❤️‍ My doctors will definitely be getting a copy landing on their desks...all five partner GPs and more! xxx

[Penelope-Mary]

👏🏼👏🏼

[Hidden]

Fabulous! Thanks Paul and Melanie!!

[Wendy39]

This is a wonderful idea! Thank you both.

[Lupiknits]

Excellent🥳

[C-aches]

Thank you both so much for your work, it is much appreciated!

[MelanieSloan]

Thank you so much to everybody who has participated so far and for sharing some often very difficult stories and diagnostic journeys. We received a total of 233 completed questionnaire responses and have just finished the interview stage. I will post soon with some of the early findings but the key pieces of advice from you all to the medical profession were very clear:

1. To listen and believe

2. To have more of a focus on quality of life, especially in relation to the life-changing effects of fatigue

3. To provide a lot more support in the diagnostic uncertainty phase and persist in 'joining the dots' of often vague, seemingly unconnected initial symptoms.

4. To stop giving 'in your head'/psychosomatic, mental health, functional, health anxiety etc misdiagnoses due to a perceived widespread lack of knowledge and understanding about the disease. These types of misdiagnoses were reported to be very common, very distressing and to have a lasting negative impact on many aspects of people's lives including feeling trust in the medical profession in the future.

We have also been working with forum members and LUPUS UK to look back over the forum conversations and find common themes about members' experiences and views. We plan for this to be a paper in an academic journal that will be read by the medical profession and would like it to be a paper from ALL of us that will help improve knowledge and understanding of the challenges faced by lupus (and other connective tissue disease) patients.

Paul or I will post later with some of the key themes we have identified to see if you all agree and have any other suggestions or key areas that you want the medical profession/ researchers/ policy makers to understand about your life, your disease, your relationship with the medical profession etc.

Something that has been noticed by Cambridge University is what an amazing group of people LUPUS UK forum members are, in terms of willingness to be actively involved in research and improving the situation for future patients, and also in helping each other so much in adapting to life with lupus. One of the key themes is the strength and support gained from each other.

Thank you!

Melanie

[Lisalou19 in reply to MelanieSloan]

I found this very emotional to read, because the impact of us being mental has devastating affects. I’m sorry so many people have had to go through this 🙁

[happytulip in reply to Lisalou19]

I completely agree. Prior to being medically retired, if I had gone up to a doctor to discuss a patient with the symptoms of lupus whilst wearing my scrubs I KNOW I would have been listened to.

But when I suddenly became unwell, was no longer in my scrubs but in a hospital gown, I was actually mocked and not listened to by the same people I had worked with for years. Suddenly I was mentally unwell and in need of CBT????

I was the same person but got seen as a person who was suddenly making my very obvious and acute symptoms up, just because 'your bloods are normal.'

I wish no one would ever go through the experience that I've had but sadly I know that they do and in the same hospital.

[bluebell99]

Excellent news, thank you both!

X

[Krazykat26]

Great idea..I'm in!! 🐱Xx

[tashi]

Great research and also validation of how important patient forums are for moral support, guidance and suggestions, and first hand experience reports. All positive things that are often missing from our medical appointments 👏

[cuttysark]

Paul is this open to everyone with Lupus Like diseases too but no definitive diagnosis?

Many in the forum have connective tissue type diseases with Lupus being the nearest contender.

[Paul_Howard Partner LUPUS UK in reply to cuttysark]

Hi cuttysark , yes, we welcome any and all members of the forum to be involved regardless of their diagnosis. It is important to highlight any shared experiences and themes that are discussed here.

[cuttysark]

Excellent Paul!, Thanks for letting me know.

[HedgeEnd]

Brilliant idea

[Paul_Howard Partner LUPUS UK]

Question 1 has now been posted at healthunlocked.com/lupusuk/...

[Spotty-ewe in reply to Paul_Howard]

Hi Paul,

I’ve been reading this with great interest and wishing I’d been able to take part but am only a recent member.

Is the research now complete? If so is there a site I can read all the results and conclusions?

I’d love to know more about it.

Thanks.

Spotty

[Paul_Howard Partner LUPUS UK in reply to Spotty-ewe]

Hi Spotty-ewe ,

Thank you so much for your interest. We have finished gathering information for this study and the final draft of the paper is being completed ready for publication. As soon as we are able to, we will share the paper and results with everyone here.

[Spotty-ewe in reply to Paul_Howard]

Many thanks Paul. I look forward to reading it in due course.

[miccika1]

I clicked on melaniesloan and got an error that the survey is not active. Regarding fatigue, after an hour or so of sitting in a meeting im so exhausted that i can hardly sit in a chair in the next meeting no matter how engaging it is. If i keep pushing and most of the time i have to in order to keep my job i get to the point when im so out if ebergy that i have to think in order to breathe. All energy is used to breathe and can't do anything else. So i have to lay donw every few hours for at least 15 min and they helps. Each day is different thou. I have completely normal days and i have days when i wake up and i have almost no energy and have to stay home the whole day.