I am very pleased to announce that a paper from the research study conducted within this forum has now been published and is available to read online through an open-access journal atacademic.oup.com/rheumap/ad...
We are extremelygrateful for everyone who took park in this research study. Loads of you shared your experiences, views of your symptoms, delays in diagnosis, misdiagnoses and medical support. It has helped the researchers to identify common experiences, preferences and unmet needs.
On behalf of LUPUS UK I would like to thank MelanieSloan who brought this research proposal to the charity and then led the project superbly. She has done incredibly well to bring onboard well-renowned lupus specialists and ensure the project was patient-led and patient-focussed throughout.
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Thanks Lupus UK for supporting the study and thanks to everyone who took part.
btw, folk can tweet the article from the journal site and/or put the link on Facebook. I think the more reads it gets, the more the medical profession will sit-up and take notice.
Thanks so much to all the amazing members of this forum who made this research, and our future research studies possible! We work closely with the fantastic LUPUS UK and some of the top patient-centred rheumatologists, and most importantly, as many patients as possible.
I am a lupus patient myself and member of this community, as are several members of the research team, so the team as a whole hopefully has a depth of understanding that can be lacking in traditional physician or academic-led research. Our aim is that all our research is carried out by and with patients, and we couldn't wish for a better, more engaged group of patients than are on the LUPUS UK forum
Please do read the study Paul has provided the link for, and either discuss on here or email me on: mas229@medschl.cam.ac.uk if you have any comments, ideas for the next patient-focused studies or feel there is anything important we missed (we have the forum analysis and interviews studies to publish soon which will hopefully contain all the major issues faced and raise awareness).
Thanks again to you ALL - together we can raise awareness and work together to improve medical experiences, support and wellbeing.
Hi Sue_petal, yes, lots of research shows that the training of medical students/doctors in recognising and treating lupus/ other systemic autoimmune rheumatic diseases is currently poor. Although they are also some of the most difficult diseases for doctors as well as patients, due to the number and different types of symptoms, and no definite tests.
LUPUS UK do a brilliant job of awareness raising and representing the needs of their members. Working with them and as many patients as possible, we plan for these combined research projects to provide more evidence that improvements are required, in addition to helping finding patient-approved solutions/improvements to some of the common problems experienced.
Thankyou so much to both Melanie and Paul for putting so much thought and effort into completing this published research article.
Ironically I was wandering around today wondering why I was so exhausted with all my lupus markers under control.
This article really takes on discrimination in the system head on without pulling any punches. I think its a start of hope for more respectful responses from the medical profession - as these issues just keeps mangling our minds towards trauma induced mental illness. I'm incapable of trusting Doctors and unfortunately years of this stuff has started to caused me to start to loose faith in people more generally which is not rational.
I've was diagnosed with SLE at age 14 ( Now 51) - and had the start of SLE induced digestive problems - in 2013. This was thought to be anxiety and irritable bowel / - now at 2020 and 30 kilo's lighter - I'm waiting in line for a pill cam for intestinal bleeding. From this bleeding I developed chronic iron deficiency and as it became worse it caused a reduction in red blood cell size - resulting in shortness of breath.
Guess what my GP and the ER Doctors thought it was.....a panic attack. Apparently I was pale because of hyperventilation. Apparently my gums were somehow rendered near white because of this too. I've never hyperventilated in my life - and I've never come across such viciousness from a GP who was trying to direct me to a psychologist over it all.
All this strait after a two year horror delay in treatment for renal failure because I was 'anxious'.
This study sums up what has been - undoubtedly the greatest and most constant trauma of my life. Not the illness itself - but the medical professions obscenely flippant and facile reaction to that illness influenced by so many biases and contempt for me - and us as a patient group.
Classism, racism, sexism, lack of worthiness as a patient because of intellectual or mental health problems. Pretty sure I wouldn't have mental health problems if Doctors would just learn to listen, validate and act right away when I've presented with these devastating problems.
Recently I've noticed that - not in the first time of my life - my emotions have shut down - due to a life time of this repeat trauma. I've literally felt dead inside - but today I cried for the first time in about two years - and that was when I read this article.
It reminded me that there are good people out there trying to fix this devastating problem. You've provided me with an eloquent document to hand over to - not only Doctors - but Medical boards, Psychologists, Family and Friends - as it so very neatly sums up all angles of the problem......…..
and right now I just don't have that level of eloquence - or the psychological stamina to convey this myself moment - not that any medical professional would believe, or be brave enough to acknowledge this message from me - the scapegoated hysterical patient.
Its so easy for me to loose touch with the fact that the problem isn't me. This article reminded me of that fact just when fatigue and a massive swirl of trauma was making me forget.
I think this is the beginning of a targeted document sharing spree for me. My first copy of this is going strait to the Australian medical board. (Who are waiting for a reply to a nebulous finding they made over a complaint I made) From the feedback I got from them - I think this is just the kind of stuff they would be interested in.
I think I'll also carry a copy with me for general safety.
Thankyou.
I'm feeling a little bit stronger today because of you're work.
I’ve just read your long post . This is just how I feel . I went to my practice doctor last Friday . Due to me usually leaving the practice and forgetting this , and forgetting that . I looked on line how to get the best out of my visit and not walk away with unanswered questions etc .
Anyway I wrote my note . 2things to discuss . Being violently sick on Aza and my severe disc problem with stenosis and a new middle back pain for several weeks now , not getting any better and keeping me awake .
He barely glanced at my list , and asked when my next appointment is with ruematology . No examination of my back , he prescribed me painkillers , after I just told him I’m having difficulty holding things down , he prescribed painkillers that I have had a full trunk body rash in the past , which he did not even think this was a problem , said I’d had them since ??? he said ruematology will order me a scan on the day for my disc problem ????, I waked away so sad and hurt , felt like I’m a problem , and I’ve taken up his time . By the way this is the doctor who wrote on my notes what next !!
I use to be quite a strong person with confidence to hold a job as a research interviewer .
I sometimes think when I feel under-treated . That you could be in my shoes and then see how it feels .
I now feel like a hiding mouse . Who dreads every moment of every visit regarding my health .
I can definately relate to how psychologically battered and bruised you are. They do have a nasty way of making you feel like you're wasting their time, when in reality they're being paid to provide you with care and technically - are you're servant - not the other way around. I hope you can find a GP who can actually deal with ' what's next ' as aposed to pathologising you for it.
I do feel very similar to you in that I used to be a fairly happy, confident and well adjusted human being - but because I have to front up to a sub set of humans that are now essentially trauma triggers I feel utterly trapped in a nightmare.
Many of them just don't have the psychological capacity to blame themselves for their inability to cope with our illness so they make the decision to blame us instead. It's a nasty self serving choice they make, . but it seems to have become a habit with too many of them.
I had a GP contemtuously snatch a list off me once and not really read it and the shock of it rendered mute. I dont think being eloquent would have worked with this particular individual.......... Thankfully I was able to find another GP. But in the interim I bought two lists - one for him - one for me and I've kept up the habit ever since as I'm not quickly eloquent even when somewhat happy well in their presence.
It's especially horrific when you've got the royal combo of being extremely unwell combined with chronic invalidation. It's enough to bring the strongest of people to their knees. They do hold the power of life and death in their hands which is the core of my traumatic reaction to them. Unfortunately some have ego's big enough to think they are God's - and they're just so far from it.
Despite how vaulnerable we feel - I often see how very quickly healthy assertive people unravell when they're confronted with this dynamic just once.
So i'm hoping you and I can get through this period and come out perhaps stronger in the end.
Oh Freckle, so sorry for the terrible time you and others have had, and are still having. It is stories like this that inspired us to do this research and we very much hope it will help improve the situation.
You are definitely not alone and it is not you. In fact, part of the title of our next paper is 'Is it me?' in recognition of the fact that so many people with lupus/ related diseases start to question themselves.
I know many people have had bad experiences, but there are some amazing doctors out there who really want to help. The study rheumatologists are two of the top UK SLE specialists and two young up and coming rheumatologists, all of whom are working on these studies for free because they feel so passionately about improving the care and lives of those with these diseases.
I very much like the title of you're next paper. 😁😁😁
It's so so apt.
I am a tad far gone with my jadedness toward Doctors. Theoretically I know they're are good - decent - self sacrificing ones out there but it's literally becoming harder for me to make the distinction after being discomboblated for so long.
I recently made the discovery that my GP during my teenage years ( 1980's) sat on bad renal pathology and chose to do nothing which hasn't helped. It's given me double the heebie jeebies.
My GPs a good example of being quite self sacrificing - and very competent - but he's made so many of the judgemental errors layed out in the study - its very hard to reconcile these two aspects. I've usually Doctor hopped in reaction to these problems but have stuck with this guy for years in the hope that in time he'd learn from his mistakes. He's now showing signs that he has - so things are improving a bit and I'm actually physically well at the moment.
This is fantastic Paul and Melanie. Lovely to learn how much we may influence doctor's attitudes and our treatments with this research work. There is a lot that needs changing for us so thank you Lupus Uk for making this possible. Xx
Thank you too misty - these studies are only possible with you all.
I know some people don't like the wolf link with lupus but somebody gave me a Rudyard Kipling quote the other day that I thought described the team spirit of the forum very well.
'“For the strength of the Pack is the Wolf, and the strength of the Wolf is the Pack.”
Don't forget the He wolves too! I think sometimes the men and children can be overlooked because it's much more common to start in females in child-bearing age.
The study we're close to sending to publishers is finding that there is more damage - and much more help required - in those misdiagnosed and disbelieved in childhood.
I'm so so pleased you're working on childhood onset lupus and the profound damage that causes. If children manage to survive the experience - they're often disabled and haunted for life.
I like the quote too Melanie. I saw some of the comments made to Paul about the wolf and didn't understand their problems with it but each to his own I guess.
Do hope we'll be able to help with future research , pain is another symptom that's not addressed very well like fatigue.so glad you like the forum!. It's helped me considerably. I hope your keeping well. Xx
Don’t know the emoji for chuffed but I expect I’m one of many who are feeling very chuffed about your research paper. I do hope it’s okay that I shared it on my FB as part of my efforts to raise awareness for #rarediseaseday yesterday and it received much approval! X
Yes share away please, the rule from the journal was that we can only share the link to the abstract (that Paul posted) but as that then links to the PDF of the whole paper I think that works fine.
And it's OUR research paper! Definitely a team effort from many people, particularly all the inspiring people on here, who support each other and want improvements for future patients, despite the massive health challenges often faced themselves.
Well I rarely post about my own health conditions on FB but I decided to yesterday. I just feel that I’m always sharing my family and friends’ posts about cancer, mental health and deafness/ sign language (bearing in mind that both my sisters and brother-in-laws are profoundly deaf).
So when I received an email from the UK genetic alliance about it being Rare Disease Day I decided to post myself about this. I suggested on my post that we maybe think about families, friends and colleagues raising money for rare conditions centres around the UK. I recall hearing a radio programme about Maggie Keswick Jencks who’s death from cancer led to the endowment trust that has helped provide emotional support to so many cancer sufferers around the UK.
Wouldn’t it be great to create similar centres to Maggie’s, attached to hospitals so that newly diagnosed and those struggling have somewhere to go for emotional support and to access more information about related rare conditions charities? Or if very rare indeed then volunteers might put out the word on their behalf or just understand and offer a cuppa and TLC.
Interestingly an old art college FB friend commented “and also include mental health conditions”
I replied that yes of course we need to be aware of mental health - but actually my post was only about rare diseases for Rare Disease day and mental health conditions aren’t rare.
She then said she supposed so but, having had cancer and been given red carpet treatment from the NHS and Maggie’s from beginning to end (she’s in remission) she was just very aware of how unequal things are presently and wants every condition to get equal support to hers.
It was interesting how her comment and others made me realise that the more common the condition, the more people do tend to rally around and show compassion to the sufferer and their family.
Yet we can tell people we have our CTDs until we are blue in the face but the support will never be the same because they are either rare or rarely diagnosed.
Anyway I used this link to your PDF to hopefully drum home the point.
From my perspective this community is absolutely invaluable. I was referred by my ‘FND’ obsessed neuro for neuro psych assessment last year. I agreed out of sheer curiosity and because I thought maybe it would help to talk through my medical PTSD with a trained person.
I was duly assessed and the very nice clinical psychologist said that she felt I’d benefit from ACT. So I’m on a very long waiting list for this small specialist service. I received a copy of her assessment letter and it was packed with inaccuracies. So I wrote back highlighting these. She phoned me up to thank me, said she’d attached my amendments to the letter and to let me know i was on the list but it could be up to a year or more until sessions started.
It was an exceptionally bad morning when she happened to call me and I was very uncharacteristically in tears! One of the things I recall saying to her was “what none of you seem to grasp is that it’s the rarity that’s so isolating, not just being so unwell!”.
It’s the thing of being referred to as a “complex patient” all the time in multiple clinical letters from multiple specialists and GPs staring at their computers and rubbing their faces exclaiming “oh you are so complicated!”. I want to shout “of course I’m probably no more complicated than your next patient! it’s my body that’s complicated so please don’t confuse the two!!
Also friends from here have said how they hate the term “co-morbidities”. Wouldn’t it be great if clinicians were taught how to use the English language appropriately and respectively to each other and to us?!
I just don’t think people grasp this at all and I think this is what contributes to the secondary depression so many of us have.
Plus the fact we so often go into see doctors over- compensating for fear of being “heart sink patients” by exhibiting an air of jocularity and saying we are feeling “fine!”
Ten minutes with a GP or a specialist is never going to be enough time to concede that we are probably not fine at all. So this is why I’d love for there to be equivalent centres to Maggie’s for all with rare diseases - or rare symptoms of rarely diagnosed diseases - to be able to go to for a cuppa and a debrief or some face to face solidarity after our hospital appointments.
When I win the Turner prize (lol) then I promise I’ll make a significant contribution! Xx
• in reply to
PS forgot to say that someone with multiple autoimmune conditions/ diseases/ overlap AIDs replied to my tweet with link to your MES paper saying: “Thank you so much for this study. It was excellent and so pertinent to what we were discussing. Trust in health professionals is essential for us & I wish more of them recognised that this is a key requirement as part of their role, i.e. building that relationship of trust. 👍”
Oh twitchy I just love your reply and agree with everything you say!. It's just so true what we're having to go thru!. I've just been to my GP and was more positive than I should have been because I don't want him to view me as a heart sink patient as he's fairly new to me!. Also at our local hospital a new cancer well being centre is being built thru local donations which is fantastic and I've written to the trust asking if other patients like me with these illnesses could also access the counselling , therapies etc that are going to be provided. They replied yes we will be able to but we'll see as any publicity there is only says its for cancer patients and their families!. It's due to open soon so I'll keep plugging away as we do need this support badly coping with all that we do!.
It's just wonderful sharing this with you on forum, knowing we're not alone even though we can't meet up with a cuppa!.
Thankyou Sue-petal, with iron infusions I'm doing a lot better.
I agree we need to assert ourselves and bring the fight to them - but for me it's always been a fine balancing act of pushing - but not pushing too far ( and pushing isnt much where I come from as I live in an area where there's a Doctor shortage ) So not only are Doctors under a lot of work pressure - and more prone to ' hit out ' they can also withdraw care if they want without repercussions.
I've also had Doctors take on a pack mentality and bully because of their insecurity with my illness - and the fact that long term trauma has made me a bit too passive and too much of an easy target for whatever agenda they want to use me for.
I agree with the need for medical student - as well as older Doctor education..........and as an ex - teacher I'd be really interested in what form this would take. It's so important despite the structural and personality issues.
There needs to be concrete statistical guidelines that medicine can refer to regarding our symptoms, diagnosis treatment and outcomes.
Right now - ( in Australia at least ) there are no legally recognised guidelines for any of these. They're all working on a vague idea - about what the definition of lupus is because all our presentations are theoretically different. ( The same problem happens in research )
For me this is a core issue that needs addressing.
I fit into the stock standard - anti ds. DNA positive - renal, arthritis and other internal involvement type serious level illness - and I agree that our patterns of illness are consistant no brainers - and diagnostic guidelines and diagnosis should be a simple thing.
For me - even with a presentation of overt pathology set in stone on paper that I presented to our health regulatory board regarding the misconduct of a specialist......, I was still accused of having ' alleged flares ' . ( apart from one that they accepted )
I later questioned a lawyer about it and apparently where without fundamental human rights as a patient group without these concrete ( uniform ) medical statistical guidelines.
I believe some Rheumatologists are working on this ? ( I think ? )
As a ps. After my complaint was over - the intermediary asked me - Do I understand my pathology ? I said yes. After some arguing and me accusing them of being corrupt - it occurred to me later that it was entirely possible they didn't. This complaints body is run by Doctors.
Freckle 1000 I also live in Australia and have experienced problems similar to the ones you raise. I guess we just have to keep going and hope that our Rheumatologists finally get the message. The more patients who complain the better for our case as a whole.
I'm sorry you've come up against the same horrific problems. Its just so utterly wrong.
With me, complaining to Doctors - slightly - meant having it pretty consistantly backfire and caused scapegoating and interference with medical care. I dont know what you think, but Doctors here seem a bit more 'overtly' belligerent and bullying.
I've been yelled at for just asking a reasonable medical question.
I think that's why the researched documents completed here are so useful and powerful.
Very handy to just hand over - perhaps well after the pandemic is over.
Hi Everyone. When I was diagnosed with SLE my consultant gave best and worst details. After leaving his room I was upset and teary and walked past an open door where a lady in the doorway saw me and asked me if I needed to sit for a while with a cuppa. This was a cancer patient room, cozy chairs, leaflets and information about various forms of cancer, drinks and lovely staff to talk to. She talked and listened while I talked about SLE. I felt much better. She said it was a room for cancer patients after their appts and told me I wouldn't be able to use the room again. Yes somewhere like this would be brilliant to go when we had had one of our not so good appointments. Stay well all.
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