I've been treated so badly and been ignored and written off.
I've been incredibly anxious and I have been assertive and they've done piece meal things like write referral letters (although rubbish ones), although they've generally been extremely rude and unhelpful and palmed me off as mad. One even said i was wasting NHS time and resources.
I have no problem making complaints generally - but they hold all the cards here. They seem to be accountable to nobody and just support what the notes of the previous doctor said without asking any questions or actually listening to me. For people who've stood up to doctors before - how exactly did you do it? What exactly did you say?
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Sarah030609
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Sarah- they have a duty of care. I am not sure about your exact illness but you can remind them that they have a duty of care to every patient. I have my fair share of dealing with doctors. Not all of them know about Lupus too. I usually go to another country if I cant get any help here. Sad but it saves our lives. Change your GP? I went through phycological assesssments before being refered again just as I gave up after trying so many times to get help. Doctors thought i was mad. But I had Lupus. Dont engage with them if they make a silly comment. Ask to be treted respect and that tou are old enough to know when something is wrong, tell them tou need their help? Thinking about you. Lots of love. X
Thanks LalSD. It’s encouraging that you have been through it and got a diagnosis still. Mine will be harder because I had a reaction to a substance that medical journals say can erode bone in certain circumstances and be toxic - yet big Pharma push the medical industry to say is wonderful. It’s my word against this industry. They just read the notes of the previous doctors and immediately put up a wall, staring at me with this glazed, angry expression and refuse to look at my before and after photos. Which country did you go to to get help and how was it different?
It sounds like you are struggling to find out what is wrong with you and to get help to feel better. I am not sure it is a question of standing up to the doctors as much as getting clear about what you want. Have they given a diagnosis of some kind? The problem may be that your symptoms are not clear enough to indicate any particular illness and tests so far have been negative. You might ask them if they are observing you for further symptoms. Definitely report new symptoms because that will help to guide them concerning diagnostic tests. Some illnesses, unfortunately, take time to evolve.
Thanks KayHimm. Yes, the problem is that it was a reaction to an unlicensed substance which looks to have eroded bone throughout my body. It sounds crazy but I’ve done extensive research on it. The only way to diagnose this would be a test for bio-markers RANK-L and OPG but they keep saying that there’s no way a skincare cream could do this and that I’m crazy. I have clear before and after pictures of my face that they won’t even look at. I have testimonials of people online where they also experienced face shape changes and eyes sinking into their sockets. It is a medical issue because it has led to pain, fatigue and a sensation of throat obstruction when I lean forwards or lie back. Also I can’t pursue any action against the company that sold it without a doctors confirmation that this was involved.
That is a complicated problem. Are there people who have been successful at getting the necessary tests? Honestly, doctors are unlikely to take patient testimonials seriously. But if you have scientific evidence, you should bring it to them. They should explain to you why they are sure the cream did not cause the bone loss. This is clearly distressing as it is causing pain and disfigurement.
This desperate sort of knowledge is extremely difficult to live with...especially when the health system refuses to acknowledge even the possibility of its existance ...i know because i’m a DES Daughter with the reproductive organ birth defects, infertility & precancerous conditions clever researchers finally proved are characteristic of inutero exposure to this endocrine disrupting artificial oestrogen which was prescribed like smarties in several countries in the 1950s-‘70s to pregnant women - supposedly to avoid miscarriage...it wasn’t until my generation of DES fetuses came of reproductive age in the 1970s that researchers noticed the enormity of this scandal and published their findings in an internationally respected medical journal, which resulted in official recognition & endorsement of the side effects DES causes
Since then groups of us have banded together and taken manufacturers to court...these cases continue to be prosecuted, but with great difficulty.
My consultants think it was this DES exposure which tripped my genetic predisposition into immune dysfunction & connective tissue disorder outright resulting in infant onset SLE & immunodeficiency disease.
Before i left the USA in the 1970s, gynaecology found & documented identified my DES birth defects etc, and advised me re the monitoring i needed. Then i moved to the UK where the NHS stonewalled any mention of DES, asserting it had never heard of this totally official internationally acknowledged scandal.. FINALLY when my lupus diagnosis was recovered in 2011, NHS gynaecology admitted they have a protocol for monitoring DES Daughters and enrolled me in it.
You will know EXACTLY how i feel about all this. So am v much feeling for you sarah XOXOXO
You can download the story of DES, endocrine disruptors & environmental health via this link...it’s a wonderful article published in a highly respected journal: nothing conspiracy theory or alarmist about it!
Honey, you need a good medical lawyer on your side. Get some advice, and soon. They may be already aware of this product just through law journals etc. Good luck.
If you are meaning hospital Consulants, have you made a complaint to PALS...the patient complaints procedure at hospital? They will investigate & possibly refer you to another consultant.
Hello sarah: your words hit me hard, cause i’ve felt the way you’re describing for decades. Yes, the health system saved my life very efficiently several times in the course of those decades...but it never seemed interested in connecting up the dots in my case - my spine condition was blamed for everything, i feel as if it was just a convenient scapegoat for lazy medics unfamiliar with immune dysfunction & connective tissue disorders
Meanwhile i was becoming more & more depressed, bewildered, furious and traumatised by my experiences with the health system. I felt totally alienated. Meanwhile multisystem debilitation progressed without the right systemic treatments cause my infancy lupus diagnosis had been lost when i moved to the uk at 21 (long story) and back in the States my family + doctors never told me i had lupus...growing up in the 1950-70s i thought myself just more sickly than others
Anyway, over the decades, i was referred to loads of different clinics where i was diagnosed with a collection of what we now know are secondaries to my primary illnesses (infant onset lupus + ehlers danlos + immunodeficiency disease), during those miserable 40 years i tried everything i could think of, but this was back before the internet...and before the medical community had begun to wake up to the significance of my kind of early onset progressive autoimmunity & connective tissue disorder & antibody deficiency disease. So, am TOTALLY relating to your post & scratching my head: can i say anything helpful?!
Basically i agree with LalSD & Kay. And i’d add:
- you’ve been trying every trick in your magic box...so now maybe is the time to think outside the box, which is exactly why you’re right to be posting these questions here...without this forum, i’d never have learned how to, haha, help my medics help me as much as they do now
And, for what it’s worth...here are a few tricks i’ve found have tended to work for me lately:
- i help myself feel confident by prepping a list of 3 questions for each appointment...and i try to have a separate sheet listing stuff i’ve noticed about my signs & symptoms relating to these 3 questions...and i do try to go into an appt actually looking unwell...ie i don’t put too brave a face on
- as i meet the medic at the appt, the first thing i do is look him/her in the eye and say: it’s good to see you, how are you today? Then when he/she asks the “how are you/what can i do for you” question, i say something like: very poorly, thanks. This is why i’m here to try to help you help me. So, how can i help you most today? This seems to wake medics up...they always look surprised and tend to be more receptive
Apologies for the lonnnng reply...but this subject is close to my heart. Am thinking you get the drift! for sure, i find these tricks i’ve outlined are easier to actually use now my 3 primary conditions are FINALLY diagnosed...and my aged mother has explained about the infancy diagnosis...but sometimes medics still do give me a hard time, and my Medical PTSD still flares before and after each health appointment no matter how much i like the consultant & no matter how constructive the consultation...i doubt i will ever loose the deep sense of fear, hurt, fury & resentment my 40 years in the diagnostic wilderness bred in me...THANK GOODNESS for wonderful support groups like Lupus UK: cause you’ve ALL helped me at least begin to heal...i’d be lost without the LUK community, especially our precious forum which is THE BEST EVER
Hope something in there is helpful...am sure you’ll get lots of replies: almost all of us will identify with your post! Take care & please let us know how things go
I love the way you engage the doctors, making a joint effort possible. I have found when I ask for advice about something, I get a much more positive response. I try to acknowledge that it is not always easy for them to have an answer but ask what their best guess is nonetheless. As in all human relations, communication is key. I will put the “three questions” into practice! 😘
And i love your way with words, Kay: you’ve summed this up so clearly & concisely! When i discover am with a medic who doesn’t respond positively to this approach, i tend to try to give him/her a second chance, but there have been medics i instinctively knew to give up on PRONTO at our first appt🍀❤️
Thanks a lot for the reply Coco. No, I love the long reply. The problem is that I’ve tried that approach (although your 3 questions thing really is a great idea) and they just don’t want to help me and have literally told me to stop wasting their resources (I’ve only had 2 blood panels done and both due to specialists that I’ve paid for myself). I’ve tried buttering them up and being as co-operative, polite and helpful as possible but they don’t look at me or my research or photos or private tests and just explain away my symptoms. I feel like I need to be more demnding now but I’m not sure how. Or should I just give up and rely on google translate and here?
Ok, i get it...and of course you’re TOTALLY right to be thinking this through as you are...
For what it’s worth:
at a somewhat similar point in my medical odyssey in 2010, my signs/symptons/manifestations had become so multisystem, so visual and so debilitating that my long time pain consultant INSISTED my GP refer me to rheumatology for autoimmune disease investigations...lucky for me, the rheumy she sent me to happened to be quite expert on lupus & even erythromelalgia...but i just didn’t get a good feeling about him when he hardly looked me in the face and mumbled that he doubted his blood tests would show anything clearly...but because he mentioned his tests were for AID inc lupus, when my mother asked me what tests were being run & i said something called lupus...she shouted down the phone: but dear you’ve always had lupus! I replied: what’s lupus? Then it all came out...AND then i studied my GP printouts of historic blood tests results + patterns of prescrip meds ...and was able to see the light at the end of my tunnel: because by then i was on loads of topical steroids for diagnosed conditions all over my bod + with years of chronic below range lymphocytes....SO, i guess i’m wondering:
- Have you got hold of your GP records, especially printouts of your historic NHS test results & prescriptions...cause GPs sometimes don’t “have a chance” to look at these long & hard enough to see the evidence that’s been sitting there in front of their nozzles waiting to be noticed...things like patterns in existing NHS records can be v compelling with other NHS medics
- what part of the UK are you in? Is a there a Lupus UK Centre of Excellence hospital within reach? My main hospital is in a neighbouring NHS region... i discovered the chief of rheumatology connective tissue clinic there is brilliant on lupus . I asked my GP to refer me to her because that first rheumy hadn’t given me enough of a “good feeling”....my GP doubted the referral out of region would be approved, but it was. Meanwhile friends here on forum & on my LUK local group helped me prep for that crucial first appt which lasted 2 hours! i’d waited 40 years for that experience...you REALLY shouldn’t have to wait as long as i did! Others here have been faster than i was at breaking through the terrible gaslighting/stonewalling thing you’re been subjected...i’m so glad you’re here asking these questions...and i am hopeful you’ll find the support you so badly need...just wish i could really help...
Wow Dear CoCo you have really knocked it out the park today with your reply to Sarah, and everyone else such supportive replies.
Sarah, my story mirrors CoCo in many respects, so I won't waffle on, but having faced numerous, rude, arrogrant, dismissive and sometimes outright dangerous consultants over the years, I have come to know instinctively whether the appointment is going to go well. I am always polite, acknowledge their expertise, but if I am met, with one of my pet hates of all, with someone who sits staring at a computer and rarely wants to make eye contact, I ask if they really want the appt to continue as I get the feeling your not interested in me, if so, would you be able to fetch another colleague who would be willing to talk to me, if that is not forthcoming, and the dismissals continue, I terminate the appt, and go to the desk, and ask to be booked to see someone else. I have had to do this twice, in the very long 45 years I have been unwell, and both times I have to say, I was seen by someone else the same day.
I don't expect doctors to know it all, particularly in first session, but I am get mighty defensive when they try to pull the 'depression' card for example, it won't wash, and having recently had two incidents where I was dismissed when I in fact had one life threatening issue, and another where something was clinically missed a year ago, it has triggered my medical PTSD, which is not welcome, but working through it.
At the end of the day, you deserve to be treated with respect, taken seriously, and every effort made to make you feel safe, comfortable and above all believed.
Thanks so much LupusKaren. I have endured the ‚typing on the computer without looking at me‘ twice. The first time the woman shoved a mental health referral in my hand and ignored my pleas of: ‚look it really isn’t mental health, please can you listen to the rest of what I have to say‘ with ‚I have other patients to see.. come back and see me in a month - do NOT bother any of the other doctors‘. The second doctor answered my ‚how do we proceed from here?‘ with a dismissive nod and ‚that will be all‘. She hadn’t argued against further blood tests so I asked her if the practice would contact me about them and she continued to look at her computer screen, pulled a funny face, nodded and said ‚that will be all‘. Doubtless to say I was not contacted. Your response was brilliant and something I should employ if it happens to me again. Tbh I’m thinking of trying a private GP. From what I’ve read, people tend to be getting further with them.
GRRRRREAT reply LK: i’ve never tried your “see a second consultant the same day” trick...am DEFINITELY going to try this at the first opportunity! THANKS! XOXO
Thanks CoCo, be prepared to be made to wait though, they don't like it, but I can sit there all day if needs be, but then I am very stubborn, especially when made to feel a waste of time.
Yep...makes sense....since my reply, i’ve recalled that our misty has described doing this sort of thing: i think this was when she expected & needed to see her consultant but got a registrar instead...she had to wait, but she got what she needed!
Heavens! I wish I'd been connected with you lovely people 10 years ago! Back then I was a mess of apparently disconnected, unusual and misunderstood symptoms, all driving me into depression. I recall that Google was my best friend and helped me join the dots but when I nervously asked a GP 'could this be lupus?' she laughed so dismissively that I never asked again. Fast forward 10 painful years and my mother's diagnosis of coeliac disease and rheumatoid arthritis and I'm referred for a gastroscopy, a different GP convinced there would be a positive result that would explain many of my symptoms. I do not have coeliac disease. But the negative result prompted further auto immune blood tests, leading finally to a rheumatology diagnosis of lupus.
Sometimes I feel that a systematic and scientific elimination of other possible explanations is the only truth the medical profession will hear.
It sounds like you have some very real, very distressing physical manifestations. Maybe asking the medics to identify what IS the cause, without presumption/assumption, will help you break down these barriers. The most important thing is diagnosis and the right treatment. Sometimes a quest for one particular answer can be clouding the view. I do sincerely hope you get the help you need.
Sarah030609 ...think Justinealexx has made a really good point about proceeding with the assumption that your symptoms are down to using a particular cream (even if they are 😐).
Many doctors 'Pooh-Pah' anything they don't understand (Lupus included), even when presented with evidence...and symptoms to go with it. Most especially if it's something that's away from the medical mainstream (for want of a better way of putting it).
So...presenting your symptoms and medical issues without stating what you believe the cause to be, then asking them to find a cause...and come up with ways to help you...may be more productive (they surely will have to investigate the cause if not offered one that they can discard and ignore 😉).
And once they've engaged with you properly and investigated potential causes...if they draw a blank, you can then pull out your information (look what I found) and ask the ‘I don't suppose ...what do you think 'question'.
As others have said, I'm really sorry for your predicament and the way you have been dealt with by the medical profession. And like others here, I have also experienced a level of hostility and disdain from some medics that would surely warrent censure or even dismissal - in any other profession (or so you'd like to think 🤔🤦♀️).
Please keep strong...keep searching for answers...and if you could start afresh with a new doctor or set of doctors, and follow Justinealexx's suggestions, it may pay dividends.
Let’s us know how you get on...and there are some wonderful people here who can help support you, when needed.
I would definitely make the approach of knowing nothing. As soon as you say “I think this is the cause” or “I think I know what’s wrong” they will write you off as some fanatic that sits at home on google all the time!!!!
I eventually only got put on steroids when I took a stand and I made 1 emergency doctors appointment after another for almost 2 weeks in a row so they could see my physical symptoms! Although the diagnosis took some time after , I finally was seen by my GP as suffering. Since then I have built up a good bond with my gp, and she listens. X
After years of being misdiagnosed or being told I was attention seeking I decided to take my symptoms list, my info ,research file, my book and internet search list, references to my blood tests and medical history and drop it on the GPs desk. I had all sorts of clues in the information that pointed to something autoimmune, I'd started with AI problems at 5yrs of age with TTP, then with Migraine at 9yrs old. I had PCOS diagnosed when I was 20yrs, Endometriosis in my 30s, Eclampsia in my pregnancies, photosensitivity since my teens, joint pains, fatigue, rashes, and more,AI conditions in the family yet not one GP recognised the signs. I said I knew doctors didn't like patients self diagnosing but the medical evidence of my history alone should have set off alarm bells.
I get it that rare conditions aren't easy to pick up but with the 'treat one or two symptoms' approach means complex conditions are missed. If I hadn't gone in with my tome of info and been assertive my missed kidney issues (Lupus) would have taken their toll. When I was referred to the Rheumatologist he said I was a miracle! He said I'd had untreated Lupus for a long time and had beaten the odds by still being alive.
GPs should listen, shouldn't dismiss, should have access to better diagnostic tools and use them, shouldn't accept other practitioners notes based on a 5 minute consultation that someone is a time waster. Sometimes we have to be our own advocate.
I had a problem in the past which was sorted out by PALS (Patient Advice and Liaison Service). I went to see them at my hospital, however here's an NHS link which may give you more information. I really hope all goes well for you xx
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