An a Open a Letter to Doctors Who Don't Listen

An a Open a Letter to Doctors Who Don't Listen

I wrote a letter to my former doctors. They didn't reply.

I sent an anonymised version to the doctors' publication, The Lancet. They rejected it.

So I thought I'd share it with you...

Again! I know I posted an earlier version here a month ago, but now it's an image, it's easy for anyone who wants to to share it on... Feel free!

34 Replies

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  • Thanks flow4 ! If there's one thing about this site you can cheer people up with your fantastic letter. Go you ! Ax

  • Thanks allanah :)

  • I think your letter is the best possible endorsement of online communities like this one.

    Unlike you, I colluded in the failure of GPs to pick up on my PsA. I did see them twice in the year or more during which I was hobbling around on an increasingly enormous and painful knee - yep, twice! I was sent to an orthopaedic surgeon who thought it must have been due to a little bit of osteoarthritis behind the patella but reported "no obvious red flags". Well perhaps I should have told him, and the GPs, that I was sometimes so exhausted that I couldn't stand up, regardless of the knee. And that on long-ish car journeys most of my body would seize up. And that I generally felt increasingly unwell. But I didn't.

    I was ashamed, I suppose, of feeling so awful. I was going through the menopause, which was not something I'd actually done before. So perhaps it is not so surprising that I thought that all middle-aged women probably felt like me but handled it better. I'd heard of rheumatoid arthritis, which is what I eventually thought I had, but didn't know it caused 'malaise' and exhaustion. I'd never heard of PsA and had forgotten that I'd had persistent psoriasis for over a decade many years previously. I thought 'inflammation' was what happens when you leave a splinter in your thumb.

    As I see it you are trying to report something that would seem to be far from uncommon: a worrying indifference on the part of doctors to osteoarthritis and quite possibly sexism / ageism(?) towards women whose symptoms don't immediately shape themselves into an obvious diagnosis. I think you should have had a reply, perhaps the doctors fear litigation if they so much as acknowledge this.

    However, I bet you'd get a better response from doctors if you had your time again because we learn how to advocate for ourselves. And unfortunately that takes time. Or .... people reading your letter as well as all the experiences of other members here might just get a crash course in self-advocacy. I think one of the hardest things to decide to do is to change doctors but time and again it seems that's what gets things moving. And while 'googling symptoms' gets a bad press, rightly so in many ways, using the internet thoughtfully & cautiously if you need to find the right questions to ask a doctor can make a world of difference too. I reckon anyone with joint symptoms should be asking whether they might have inflammatory arthritis. And if osteoarthritis is suspected they should persevere in getting answers about how bad it is and whether surgery is required.

    I wish I'd seen a letter like yours 4 years ago.

  • I'm moved by your reply, postle. It's sad to hear you had such a hard time getting diagnosed too, but I'm touched you think my letter might help other people... That is part of my motivation in writing it.

    I think you're hard on yourself when you say you 'colluded'. We trust doctors; we NEED to be able to trust doctors; we doubt ourselves before we doubt them, even when we've had an experience like this. When my symptoms started, just over 4 years ago, I was filled with self-doubt. I had had a very difficult 9 months or so, and at first I thought stress was the explanation. I readily believed them when they suggested it, and let them treat the symptoms rather than the cause. You could say I colluded too, except I was in so much pain, and so desperate for something that would make it stop, that I did keep going back. I suspect that was what made them think I was neurotic... :(

    It's hard to say when my RA symptoms started - it might have been back then - but symptoms of hypermobility syndrome and RA overlap significantly. After my hip replacement when I wasn't 'fixed' I got much more assertive about finding out WHY; but I am helped enormously by the fact that my new GP believes me, so I'm not filled with so much self-doubt...

    And as you say, online communities like this are hugely useful. As is Google, if you know how to distinguish the reliable info from the unreliable stuff. I don't know where I'd be without it.

    Best wishes to you postle, and to anyone else who has gone through this, or is going through it now. :)

  • Ha! Re-reading this I'm struck by the fact that, like you, I have now also been diagnosed with PsA. Like you, I have had skin rashes over decades, but doctors and I never recognised them as psoriasis. The awareness of RA is bad enough, but the awareness of PsA is truly appalling. I wonder if we can do something about that...?

  • SHocking thats all i can say. Hugs.xxxx

  • Thanks sylvi :)

  • Send your letter to a newspaper, local and national!

    xx

  • May i say CUTBACKS I WENT TO MY DOCTORS YESTERDAY IVE HAD XRAYS AND IVE GOT OSTES RA ...HE DIDNT WANT TO GIVE ME A SICK NOTE TOLD ME I WAS OBESE AND TO LOSE WEIGHT..ALSO I HAVE REFLUX MY.UNCLE DIED LAST YEAR WITH CANCER OF THE SOLFUIOUS SO ITS INHERITRAY DIDNT WANT TO GIVE ME TABLETS...ASKED HOW MANY I HAD LEFT...THAN ASK ME TO CLIMB ON BED TO EXAM MY STOMACH BEARING IN MIND I GOT OSTES KNESS ANND FEET..OBVIOUSLY I COULDNOT ... NOW IM 54 IN MY OPINION THIS DOCTOR WHO KNEW NOTHINK ABOUT ME ...AS MY DOCTOR ON HOLIDAY ..LOOKED AT HIS SCREEN BEARING IN MIND IM ON MORPHINE PARACETOMOL FOR PAIN.... ERRH I LOOKED AT HIM ASKED FOR MY SICK NOTE GOT UP AND WALKED OUT..AS I COULD FEEL A REMARK COMING ON ...WHY IS IT NOW SUCH A PROBLEM NOW...SOMETHINK IS WRONG WITH NHS I THINK THESE DOCTORS ARE BEEN PAID BY GOVERMENT NOW TO STOP SICK NOTES... IVE NOT BEEN ADSESS YET BY ESA...BUT THATS NOT THE POINT HERE IM DIABLED AND WAS TREATED LIKE A SCROUNGER OF SOCIETY...IM REPORTING THIS DOCTOR AS I FELT DEGRADED BY THE WHOLE EXPERIENCE...HE NEVER EVEN NEW MY SSYTOMS WHAT ARE THESE GPS PUTING ON THERE SCREENS ABOUT OUR VISITS TO THEM...I KNOW THIS DOCTOR KNEW NOTHINK ABOUT ME ODD DONT YOU THINK......

    ..

  • Sorry you had a bad experience. Hope you can get sorted. :)

  • I'm really sorry your wonderful letter wasn't published in the doctor's magazine, it makes thought provoking reading. Wonder if you had included your name (but told them you didn't want it published) if they might have published it. I know a lot of publications won't touch anonymous letters.

    You could always print off a load of copies, go (well - sneak) into the loos in your former doctor's surgery and stick them onto the back of the cubicle doors. I imagine it would be ages before anyone noticed them on there and it would make such interesting reading :)

  • Oh, when I say 'anonymised', I mean I removed the doctors' details, not mine. I provided my own full details to The Lancet. :)

    Thinking (and smiling!) about your loo idea... :D

  • Well that's not the reason for it then! I think it is something that should have been published as a timely reminder of the responsibility they have to their patients and also that they should respect their patients. It also shows the poor ones up and let's them know that there are good doctors out there - they should be able to recognise what sort of a doctor they are.

    Yes, the toilet doors. Years ago two people (both married to other people) where my son worked were having a 'not too secret affair' and he said some joker had printed up a load of mock wedding invitations naming the happy 'couple' and stuck them the cubicle doors in the toilets.

  • Try a,journal,for GPs or rheumatologist's? Lancet is very broad.

  • I do get cross when I hear that so many people have not been listened to - but it is difficult too for the doctors who have this stream of people coming in with vague symptoms some of whom are dissatisfied with life and seeking a medical reason for this and some of whom have serious illness.

    I can remember seeing one GP (who hadn't read my notes and I had not seen before) with suddenly swollen red ankles which were more painful than my current medication could cope with. He barely glanced at them and said something about expecting painful joints "at your age" - and I exploded at him. To his credit, he took the tirade and said "Shall we start again?" and then took me seriously.

  • Yes, I am often sympathetic too. But I am less sympathetic about very un-vague symptoms being missed. An x-ray showing severe bone-on-bone hip degeneration in a 47 year-old complaining of leg pain, for instance.

  • Like you I was also treated for depression when I first went with symptoms of RA andlike you I got some deformity and was told it was a virus combined with depression also like you I was fat and middle aged but I got lucky 'they ' palmed me off with a locum- a young Muslim dr who within a week had me an appointment with a consultant and a diagnosis and the rest is history. I feel for you so much and would sometimes still would like my pound of flesh. Hope your xmas is good and your new year is better take care xx

  • Thanks. You too lornaisobel :)

  • My new GP turns out to be very good but I saw a man in the same practice a month ago and he was horrible. He clearly hadn't read my notes at all and when I told him about the pressure in my mouth and nose he told me that steroids were a waste of time and to come straight off them - my problem was apparently caused by chronic pain.

    He said this is incurable and I just have to come to terms with it. Then he asked me to be quiet while he read my notes and he straight away found a letter from my neurologist talking of Functional Neurological Espisiodes earlier this year and asked me if I knew what this meant.

    After establishing that I did know he went straight onto a psychiatric report of over two years ago - response to my former woman GP describing "patient anxious about her health". He actually pointed to the screen to show me this - watching my response. With a hot, red face i managed to look him in the eye and explain that I did get very depressed briefly - but then who wouldn't after taking one of many powerful drugs, this time for Restless Legs - which led to narcolepsy and a hospital stay following a collapse on a beach in the rain?!

    The point of this story is to say that, even if a patient is apparently a hypochondriac, a person's mental health is as important to treat as physical health and a GP should give a patient with apparent "health related anxiety" as much time as a person with cancer or a broken ankle. So Old Timer's point here is one I would question because a person can die from apparent hypochondria too. Having suicide on their conscience should be every doctor's nightmare and no one should be made to feel like a time waster when visiting a GP.

    I've shared your post as you suggested! Xx

  • I'm delighted you've shared it, Twitchy :)

    Obviously, your story is depressing. I went as far as to tell my GP "I am not depressed, but I might BECOME depressed because there is something wrong with me and I need your help to find out what it is". I am really very assertive, so it's not that I wasn't saying what I needed. But still no action. And I have also been told (by a physiotherapy consultant) that "You just have to learn to live with a certain level of pain"... Actually on the day the x-ray was taken that showed the severe OA. That did terrible damage to my self-belief too, and it was several months before I dared go back to a doctor, saying my leg STILL hurt. Thankfully I had moved by then.

    It really should NOT be that difficult.

  • I just feel that doctors have as much responsibility to patients with mental health problems as any other problem and that depression etc is already stigmatised by society at large and by sufferers themselves. So the worst thing a doctor can do is to dismiss a patient's suffering - even if it doesn't appear to correspond with a recognisable medical condition.

    Like you I stood my ground and told this guy that I'm fortunate enough not to have a mental illness - and am a natural optimist so I feel he was wrong to say there's no cure for chronic pain. They just seem to assume that it's okay to use the term "idiopathic" as a get out for referring or investigating further themselves. If they have become so bored of doctoring then they should quit and find something else to do!

    Well done for formatting your letter - although I had to share the post rather than just the image because I couldn't download the image by itself. X

  • Ps just working on a bid to lead an art project for a mental health charity, whose focus is on breaking down stigma. So horribly aware of the suicide stats around here now - hence labouring the point about what actually constitutes a "serious illness"?

  • I wouldn't argue with that at all. Having been depressed in the past, I knew that what I was feeling at that time was NOT depression.

  • I have had well recorded r.a. and o.a. for over 30 years ,and still get stupid remarks from the profesionals

    .

  • Some of them don't seem to learn, do they?

  • I went to the clinic on Tuesday for blood tests as I,m on humira. I had a concern and asked the nurse.her reply wasto make a gesture to take my worry head off. all good stuff considering this disease has left me using a wheelchair!

  • :(

  • The bottom line is that kindness to another human being, particularly if that human being is your patient, costs nothing.

  • Hi flow - just wondering if you did an official complaint to the practice? Sadly this sort of story is becoming all too common - I won't bore you, or everyone else, with my own personal experience of the ONLY doctors' practice we have here in my small town, but believe me, if I could leave and find somewhere else, I would! I too have a history of depression/anxiety, and I KNOW I wasn't taken seriously when my symptoms of RA started..... but becos this is a small town, the word gets around, and I've been told of many complaints made in the last couple of years, by other patients here. But simply becos I would still have to keep attending this practice, and the sheer stress it would involve, I've hesitated to make an official complaint. I do appreciate that doctors are under tremendous pressure, and that some of us (me included)! have not perhaps looked after ourselves as well as we could in things like overeating/not exercising enough, but there's still no excuse for just not taking each and every patient seriously. In fact, I see from my own practice's website, that we are now being told that when we make an appointment, we are to restrict ourselves to ONE problem per appointment!! Which of course is only 10 minutes. Well - following that instruction, I will have to book half a dozen appointments, one after the other!! As we all know, when you have RA or any other chronic long term disease, and especially as you get older (I'm 63), we don't just have one tiny problem that needs addressed, do we??! They are not living in the real world, I'm afraid! Enough ranting from me, but well done for writing your letter. S. xx

  • My old doctors were "the only practice in the village" too, Scotslass. I think it's true it stops people complaining, and it perhaps makes the doctors complacent. I only complained after I LEFT the area! And yes, I wrote formally to the doctors (at one site) and the practice manager (based at another).

  • Have you tried booking a double appointment? I did this for an appt a week ago and we didn't cover everything but defintely touched on the things that mattered most and got a referral to urology, time to discuss which hospital, discuss 13 week late rheumy letter while she tested my pee, time to discuss new pain relief and wish each other a happy festive season! And she smiled kindly for the first time and it took the pressure off us both. Of course 20 minutes with a bad GP is 20 minutes just to be made to feel even worse - but it worked for me this time at least so I guess with her it's just about the time pressure. Tx

  • Ive used double appointments too sometimes. They are useful :)

  • Wow!-This is one of the best letters I have ever read-you hit it spot on-Congratulations for writing such a Heartful,True,To the Point with Poise-I Love It-Bravo~~~Thanks For Speaking The Truth!

  • Thanks mocapup! :)

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