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LUPUS UK Community Survey - Question One - What makes a positive/negative medical appointment?

Hi everyone,

Over the next week or so we will be posting a series of questions to the community and would be really grateful for any responses and conversations around these topics in the comments section. For information about the research this is linked to, please go to healthunlocked.com/lupusuk/... or contact MelanieSloan.

We are trying to find out what makes a good or bad appointment/consultation from the patient’s perspective;

Please can you tell us about an appointment with a doctor (or other healthcare practitioner) that made a positive/negative difference to you? What did the clinician do that made it positive/negative?

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Recently i saw my NHS Eye clinic Cornea Service Chief for our routine 6 monthly monitoring & review appt. This medic has consistently impressed me during the 3+ years i’ve been in his care. So i’ll riff for you on this positive example.

This 🌟🌟🌟🌟🌟🌟medic gets all this right every time:

- he looks me in the face, not at his computer screen

- he starts by saying it’s good to see me & he asks me how i am

- he remembers the key details of my case and asks me to update him on each of them specifically

- he doesn’t shy away from frankly specifying the significance of my chronic conditions + manifestations

- he acknowledges that he is only one medic involved in the multidiscipline approach to my care, and he asks for updates on changes in my other multisystem treatment plans + feedback on results of investigations (lab tests, imaging) especially those in closely related specialities ie ENT

- he reminds me that he believes in transparency with patients, and then he clealy & concisely explains the pros & cons of continuing or revising my combined therapy treatment plan (he doesn’t shy away from explaining & specifying the worst side effect/s we must watch out for, ie a rare type of cancer that could affect my mucosa in eyes & sinuses etc)

- when considering the way forward, he makes me feel we do this together, and he reminds me his motto is: if it’s not broken don’t fix it. I feel as if we are collaborating...i’m not being patronised or dictated to

- he is confident & experienced enough to adapt official guidelines to suit the individual characteristics of my case (in effect, he gives me bespoke treatments)

- he explains possible treatment plan revisions, and so far always asks me to go home and think about whether we should do these...and give him feedback at our next appt

-he always reminds me to phone him if i have any issues

I’m sure i’ll think of something else, but that’s the best i can summon up right now. When i see such a great medics, i don’t mind how long i have to hang around in the waiting room! And the fact he is so committed to providing this calibre of care makes me even more motivated to prepare thoughtfully & carefully for our appts so i can help him help me most by doing my best to present my info & questions as clearly and concisely as possible

Of course, i can give lots of examples of negative experiences...but it’s simplest to just say: these are the opposite of the experience i have with this 🌟🌟🌟🌟🌟🌟 Cornea Chief 🤷🏼‍♀️. Some of my other consultants come close to his level of excellence, but mostly even the best seem so short of time, harried & preoccupied that i find myself concentrating on giving them the benefit of any doubt because i know they are all practicing under great pressure & constraints - so i leave their consulting room HOPING next time they’ll be more “present” for me. However, i do have a sort of “disaster complex” about ALL my appts: am always on edge with all medics...expecting even my ‘besties’ to let me down

BUT: both positive & negative consultations trigger my MPTSD flares...and OMG when i have a negative initial appt experience in a new clinic, or a poor performance from a medic at a clinic i attend regularly (even where i usually see a relatively good consultant) i tend to feel extremely low. This is when my MPTSD flares most severely, eg 24/7 for up to a week. I put these MPTSD flares down to my 40 years in the diagnostic wilderness unaware i had been offcially diagnosed with infant onset lupus as a toddler

THANKS again to you, Paul, and to melanie + her team

❤️🍀❤️🍀❤️🍀 Coco

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👏👏👏👍🏻👍🏻👍🏻😊😊😊

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Thanks Coco, that's very interesting to read about what your cornea consultant does to gets 6 stars from you. You say that even your good other consultants often seem harried and preoccupied. Can you describe how that makes you feel please or whether it changes your behaviour (for example whether you then tell them all your symptoms, open up etc?)

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Good question...

Well, first there is how i reacted during those 40 years in the diagnostic wilderness before 2010 when the NHS finally officially WOKE to the probability i had AID & my mother admitted she’d kept the infant onset lupus diagnosis secret from me 🤦🏼‍♀️:

During those 40 years in the diagnostic wilderness, at first i just felt trusting and cowed by the system: it’s embarrassing to say so, but basically from birth i just felt i had no power or authority to do anything but surrender to the system & accept whatever it came up with, which was mostly diagnosis + treatment of lots of secondary illnesses & also emergency treatments & also blaming my chronic spine conditions for as many of my issues as poss. ...meanwhile i felt as if my job was to do all i could to compensate for whatever the system couldn’t do to help me by researching & conscientiously practicing self help practices + getting the best complementary therapy help privately.

But of course the progression of my multisystem debilitation continued relentlessly and my family began to question why the nhs kept saying it was all “just normal” & why i couldn’t make the system FIGURE IT ALL OUT & FIX IT...which made me feel even more insecure + and a total failure + increasingly depressed, disabled, alienated & resentful.

Meanwhile my familial bipolar predsiposition flared along with MPTSD. I felt increasingly doomed, dehumanised, patronised & victimised by the system. But fundamentally i felt i was to blame for not figuring our how to help the system (both establishment medicine & complementary therapies) help me.

Had i not eventually realised i needed to save myself via seeking professional counselling, & been lucky enough to click with a great psychosynthesis therapist, i wonder if i’d be here today.

Of course, during those nightmare decades the internet wasn’t around the way it is now. Meanwhile my early onset spine conditions were finally responding pos to Pain Consultant procedures along side the Alexander Technique & meditation etc i’d been practicing for decades....which made me feel pathetically grateful to & reliant on those practitioners, but ever more BEWILDERED by the spine bit of me being that understandable + treatable, while the rest of me got inexorably worse in a way that was FAR FROM JUST NORMAL

The more i experienced all that, the more i felt like a cross between Alice in Wonderland + a Good Soldier + Rachel Welch with a BIG CLUB in The Planet of the Apes + an Aged Crone on the verge of death + a damaged rescue dog

Finally in 2010 my AID manifestations became so severe, advanced & visually obvious that they were unmistakably AID-related...which led my pain consultant & GP to refer me to rheumatology...of course this extra attention made me feel even more bewildered....but i ended up with a brilliant lupus expert rheumy who recognised very early onset SLE...and that segued into my mother confessing she’d been keeping the infancy lupus diagnosis from us all...which was confirmed in practice by how positively i immediately responded to all SLE treatments...well, i felt amazed, vindicated and REALISTICALLY hopeful for the first time in my whole life....+ deeply grateful to the nhs for at least keeping me alive long enough to experience this extraordinary Answer To Everything....and grateful to the Lupus UK community for welcoming me in: you’re ALL lifesavers!

So, to get back to the focus of your ?:

All of that HISTORY is why i’m so committed to being resourceful + to concentrating on finding practical & creative ways to react when even my good consultants seem harried & preoccupied, eg i do carefully prep for my appts (based on my symptom logs etc, i make a list of any pos & negative developments + i figure out e main questions) and at the outset of an appt, i tend to tell my consultants i have 3 questions + a short list of developments. And, if that doesn’t give all i hoped it would, i tend to say: how i can best help you, because i know time is short and they have other patients waiting. This seems to surprise & disarm them...sometimes it can turn an appt around! And i feel ELATED + empowered when that happens 😆...and my consultant usually looks pleased too. My feeling is that, like me, even my good consultants have days when they may not be practicing up to par🤷🏼‍♀️

Of course, back in 2010, when my lupus got figured out, Godot hadn’t actually turned up...lots more as happened since, and my feelings about everything are constantly evolving ...but i’ve gone on long enough‼️

😬 YIKES...i didn’t know i was going to 🗣🗣🗣🗣🗣quite so much in reply to your ❓ melanie....THANK YOU for asking, but 🤭...❤️🍀❤️🍀❤️🍀❤️

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Gosh, I think you've had one of the longest toughest journeys - and lucky to have you here to be an inspiration and help to so many people. Thanks so much for sharing your story and what you do to try and make appointments more helpful/positive. I think it was you before who said thinking about what/how to present to the doctors in appointments in order to say 'how I can help you to help me' Do you think patient and doctor teamwork makes a big difference to mental health as well as managing the diseases better?

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And THANKS 💐💐💐💐💐💐to you, melanie + everyone here...cause without you all i know i never could’ve survived navigating the past 9 years of multidiscipline (re) diagnostic & treatment process as productively as i have...after 40 years in the diagnostic wilderness i was a mess physically & emotionally and in great need of the quality solidarity + info sharing that characterises every part of the Lupus UK community.

You ask if i think patient & doctor teamwork makes a big diff to mental health & disease management:

YES i do, for instance: i’ve been taking animals to vets all my life, where effective teamwork between vet & animal & human client is key to a successful & effective diagnostic & treatment process + to the mental health of animal & owner. Each time i’m seeing a vet, i prep info about my animal’s condition so i can help the vet as much as possible to figure out whassup - cause my animal can’t talk & is usually in distress due to whatever’s wrong + to actually being at the vet’s . I can’t expect my animal to tell the vet about its issue/s...all it can do is react to the vet’s exam etc. And i need vet consultations to HELP us + be worth settling the invoice direct from my Bank of Piggy

for 8 years i’ve witnessed forum friends say time & again they wish their vets could treat them because vets tend to be better listeners & communicators & diagnosticians. A lot of us feel emotionally ‘better’ about vets generally . I tend to! My feeling is: this dramatises how close our nhs is to broken in all its parts & aspects...and i guess fixing this is as much up to us patients + our advocates as it is to doctors & administrators & politicians & academics & support groups.

I mention our advocates because although we hope to be “well enough” to actually communicate effectively in health appts, sometimes we are too ill or upset to string words together effectively..and when we are that ill or distressed (but if we aren’t literally emergency A&E cases) clinical medicine is currently letting so many of us down that we do best to attend health appts with an informed human helper aka patient advocate to help us + our medics as much as our animals need us at the vets. This is a sad state of affairs and, from what i’ve read in literature written by medics, many medics feel as sad about all this as we patients do. Especially those of us who don’t have anyone in our lives capable of advocating for us at appts.

So, thank goodness for the work you & your team are doing Melanie! You’re helping us, and you’re helping our medics! Hope that makes some sort of sense🍀❤️🍀❤️

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Thanks Coco, that's so interesting to read and the comparison with vets is very useful - especially when lupus/ CTD patients are at their most vulnerable, either seriously unwell in A&E or with brain involvement and can't advocate or explain their version of autoimmunity to get the Drs to understand and help.

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This IS it 👍👍👍👍 I DO dread being “ well” enough to get to clinic, but too ill to present effectively..i remind myself i was that way A LOT during the first 2 years of the (re) diagnostic & treatment process...and because my rheumatologist is one of my most “good” consultants, we managed to get the most out of our appts. BUT meanwhile i wasn’t having as much success with eg Foot&Ankle ortho clinic 🤷🏼‍♀️ (Clinics where my consultants were LESS “ good”)

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We are lucky to live in the times we do. But still your wilderness years must have been hell Lou xx

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SO True! XOXO

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YES , YES AND YES .I love those good consultants and so pleased you have some. xx

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I've had SLE for 41 years and the best experience with Doctors was when I was involved in a serious car accident.

When they dragged me out of the car and placed me on the side of the road with two broken arms and legs they didn't ask me " Do you think this might actually be an anxiety reaction on you're part. When I stopped breathing there was no questioning of my motives for doing so. When my lung was collapsing - they didn't ask wether It might really just be a panic attack. When I had bleeding on the brain they didn't assume I had a functional neurological disorder. When I was in pain they didnt ask wether this might be really be somatisisation.

I'd had SLE for so long - even in this situation - I was actually surprised that I received care and without having to beg. It was so easy. I didn't have do a thing - and so much empathy and Doctor concern.

I've not experienced such a positive medical experience before or since.

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Oh Freckle that sounds like an awful car crash. You say there was so much empathy and concern which you haven't experienced with your SLE. Why do you think there was more concern for the car crash etc then for lupus?

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Thats a good question ?

Over time Lupus has damaged or tried to damage my kidneys, stomach, liver, heart, peripheral nerves and brain. My bones healed.

The car accident could have happened to any innocent 'normal' person like themselves - the diagnosis was easy - black and white. It was externally physically shocking as apposed to internally shocking and once in hospital - lack of action and care by medical staff would have been noted by observers as psychopathic.

I think as Lupus patients we live in the shadows in more than one respect.

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Thanks Freckle, that's a very interesting comparison that external and visible signs of injury and illness are often treated much more compassionately and effectively than the more invisible internal symptoms more often seen in lupus.

When you say 'innocent, normal' person, do you think lupus and/or the medical profession makes you feel the opposite? As in guilt, abnormal?

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Since the age of 9 I feel like I've been living in a kind of underworld spending a lot of that time existing somewhere between life and death and never really knowing the outcome. For me normal life development stopped at around age 12. But I've lived this life surrounded by people who just seemed to magically move on into adolecence and become healthy working people with families and careers while I just didn't - and watching it all unfold - I just didn't understand why. So I felt and still feel abnormal. A permanent fringe dweller. (This on top of being called a malingering hypochondiac - and some really weird gossipy assumptions that are almost funny)

I forget that my life has been utterly unlike like theirs. I feel a bit like a vampire or zombie. The walking un - dead trying to put on a smiley face - trying to pretend to be one of them - but I feel too hollow, too traumatized, too vaulnerable. And always....always wherever there's vaulnerabililty - there's always a bully.

Unfortunately the worst bullies for me have always been Doctors - and so many methods - chronic invalidation of pretty much everything I say to them tops the list - rendering me a non person right when I need that status to survive. There's also been some very nasty episodes of humiliation and contempt - yelling harranging, and perhaps even covert sadism.

And yes ! - I do stagger around feeling guilty whenever I quite rationally and quite pittifully assert myself or get angry in the presence of a Doctor. I can actually feel guilty, discomboblated and scared for weeks after an appointment. All with a dread that it's me who's done something wrong - that there's something wrong with my mind and I somehow have to make things right with the Doctor to survive.

And then on top of this - I'm randomly rendered more marginalised and sub human via mostly unfounded psychological labels that follows me around on my medical record like a plague - also getting in the way of care. I've been rendered mentally ill because I can't get medical care and then - can't get medical care because I'm mentally ill.

Some labels seem almost engineered to kneecap my self confidence - make me doubt my own words - curl up into a tiny little ball and go away.

Many labels have next to no bearing on my reality and seem to reflect individual Doctors personalities rather than mine. I believe they call this projection. It's also abuse.

I see healthy people who haven't gone through this as innocent because they're spared the horror of loosing faith in their own ability to stay alive - spared loosing faith in their own minds and they just all seem so naturally calm and happy ? They haven't lost faith in the medical system, still respect Doctors and believe they will always at least try to do the right thing when they become unwell.

I'm completely unable to trust Doctors. Its actually written on my medical record. I always try maintain some faith - but I'm finding even this is almost beyond me now. I'm always judging the Doctors while they're judging me. I feel like I'm trapped in a Machiavellian nightmare, where I have to over analyise every move and motive.

A look, a pause, a gap in thinking, a poor description of a symptom or even one bad medical letter can mean the difference between life and death.

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So sorry it's been this awful Freckle. Thank you so much for sharing your difficult story so we can all work together to help others.

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I will try to make this as brief as possible, my negative: I attended an appointment at guys hospital back in 2016 and was told by Dr ***** that he could help me. Of course rashes are not always present when you attend appointments. I showed the doctor photos and videos and his reply "I don't see anything wrong" I was with my 3 children at this appointment and I knew he was suggesting I was mental. So I cried (a lot) and begged him to please help me. Writing this brings tears to my eyes thinking of my poor children having to witness this. The Dr's response to my pleas and I kid you not was, "Ok, just for you I will go and buy a top of the range camera and if you can come back tomorrow I will take professional photos of your rash". I left that appointment in utter despair and in response to that appointment I was referred for a mental health assessment. To this day that appointment has caused me major anxiety and self doubt.

Off the back of this a positive approach was when I attended my mental health assessment the doctor I saw was very sincere and took the time out to look at my photos which he clearly stated was signs of an undiagnosed illness. He explained a story to me that has helped me in my darkest hours. He explained that years ago when women first started showing signs of MS they were all shipped off to mental institutions as their symptoms were viewed as "in their heads". it wasn't until these patients starting dying that a doctor stepped in and realised that MS was a real illness. His advice was to keep on fighting as he believed me. Feeling believed seems to be the biggest hurdle in the journey for a diagnosis.

These negative appointments have a long lasting impact on a persons life. I still develop anxiety at each appointment. I wish he knew the damage he has done to me :-(

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So sorry to hear you had such a bad experience. You are not alone in not feeling believed on the diagnostic journey. That's very interesting about the MS story and so glad that the doctor assessing you believed in you. You say your bad experience gave you anxiety in Drs appointments, would you be able to say in what way it changed how you behave/ feel about doctors?

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Once upon a time I would visit my gp to either get advice or treat symptoms . I eventually got a new GP who has been amazing and helped me loads. She has now gone on maternity leave and I can't even begin to imagine what a new gp will be like. I feel like as soon as I start talking I get the rolling eye look. With each new specialist appointment I arrange a photo album before it, so that I can show them my physical symptoms incase they are not visible on the day. I also seek reassurance from my own children, that what I can see they can see, down to nose sores, red face rash. Ive almost be driven into a world of self doubt. My anxiety about being believed is very strong and I always have to take someone with me to appointments because the overwhelming anxiety drives me to tears. These are tears of fear, fear that again I will be labelled "Crazy". I don't associate these appointments any longer as a way of getting help, I associate them as a means of me having to justify I am not crazy.

I have recently seen two very good specialists at guys, the same hospital this other awful man works at. I have told them my experience because of course I cry but I think I also do it, so that they do not do the same thing to me. I associate crying in front of doctors now as the perfect receipe for them to think I am depressed or crazy. I can't help the tears, the build up of the anxiety takes over.

These 2 new doctors have reassured me that what is happening is real and they also had their own opinions on this nasty doctor that I shall not repeat. I am due to see one of them next week. I have some concerns regarding my eyes at the moment but I just don't have the courage to book a gp appointment, something that should be a natural thing to do, but for me, new face = repeat story = further roll of the eyes = we can't solve all your problems = Me, I will just keep quiet rather than allow any past feelings to resurface. I will forever push forward in my health journey, even if it means I am half the person I was when I first started :-(

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I really hope now you've found supportive doctors things get much easier for you. When you say you feel like half the person you were, do you feel those bad experiences have changed you as a person? Do you think there's a way to recover and heal from these experiences of disbelief that so many people with these diseases report having on their journey to diagnosis? Anything that could be done to help repair the damage?

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Yes most definitely that bad experience changed me. I am a single mother of 3 children, I became increasingly concerned that this doctors opinion would have a negative impact on me being my children’s mother. If he thought I was crazy, who else would?

How do you repair from it, I don’t know. I’ve considered writing to this doctor and letting him know my feelings and to advise him next time he has a desperate person in front of them, just listen!!! But then I retract from doing this because his already labelled me as “crazy” so me writing to him will just further fuel his opinion of me. I would definitely say some sort of ptsd has been triggered in me, and I really hope these new doctors can help bring me out of this. Maybe therapy of some sort, I just don’t know the answer but I do know he destroyed apart of me that most likely will never come back. It almost feels like an abussive relationship thinking back on it!!! He was great and wonderful and brilliant at his job, I was just the nutty woman who got it all wrong and it must be in my head 🙁

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That's very sad reading that. I don't know if it's any comfort to know that it happens to so many other people and was not your fault. The recent questionnaire showed the category of misdiagnosis with the highest numbers was 'in your head/health anxiety' and many people say it made them feel they were 'crazy' and doubt themselves. Now you've got great Drs and you're getting to the bottom of your symptoms, you know there was a reason for it all - most certainly not craziness at all. Completely understand how damaging and hard to recover from though even when you know the truth.

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I find myself getting upset for others who are going through similar experiences, it’s so damaging. I at least hope from my own experience I can reassure and encourage others. X

Ps. I have gotten to where I am today because of this wonderful site, the users and admin have given me strength to continue my fight xx

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First some positives (of many) I've experienced from my consultant:

1) Eye contact with me. My consultant looks at me like a person and not just into the computer or down at the notes which is always appreciated. We are real people and want to feel as such.

2) He listens to me - we know our bodies better than anyone so its frustrating when practitioners don't listen to you.

3) He gives time to process and ask questions and responds with thought and consideration.

4) Being personable. Obviously professionalism is vital but a little bit of normal human interaction can make an otherwise daunting appointment feel a little less intimidating.

5) Being honest! I appreciate when practitioners are straight up with me and tell how it is but in a clear and empathetic way.

6) Little things like greeting me personally and opening the door when I leave just gives a special touch that always makes me feel cared for and important - my consultant always does this and it is such a nice touch that I always appreciate :)

Some negatives I've experiences by other practitioners -

7) Being patronised. There is speaking in simple terms and then there is treating the patient like an idiot and no-one wants that.

8) Being put in the middle of medical conflicts between different departments or practitioners. We are dealing with enough and shouldn't be a middle man!

9) 'What do you want me to do about it?' was perhaps one of the most unhelpful thing to be said to me by a GP....... so I'd steer clear of that one.

10) Chronic patients know our cases our difficult - please don't make us feel like we are too awkward to treat.

I could go on all day haha! Hope this helps :)

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Thanks for the detailed information; it's really helpful to find out what makes positive/ negative experiences. Listening and believing are coming out as most important in the studies we're doing. Have item 8 and 10 happened to you with other consultants? Can you write about what happened and how it made you feel please? (if you're happy to)

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Of course, no problem at all. Yes they have both happened to me, not only by consultants but other practitioners. Being put in the middle of medical conflicts was extremely unfair and made this particular experience honestly was one of the most frustrating i've ever experienced. This was across departments. I had the week before been hospitalised from medication side effects and then days later diagnosed with an above knee DVT. This was late last year, I was incredibly active and was 27 at the time so already this was a big shock. Anyway, when at the DVT clinic the week after, I mentioned chest pains etc.... the GP asked me to go immediately to A&E for a VQ scan to make sure there was no PE present. On arrival and when finally seen, after some generic ECG tests, A&E asked why exactly I was here and that if there was a PE that it would be treated in the same way as the DVT was already being handled so there was no need for me to be there. Fair enough, but I just repeated that I had been told to come by the DVT clinic GP for the scan. There was an awful lot of 'bitching' about the other department that had told me to go to A&E while in my presence and the whole situation was just incredibly frustrating. This carried on for over 24 hours with constant questioning of other doctors actions, asking me why he said this/she said that.....'why do you need a scan?' 'why were you told to come here?' 'it doesn't make sense, the doctor shouldn't have told you to come here' etc etc..........'I don't know I was just told to come here!' became my generic go to response. I won't even go into the other issues that happened while there but this is what happened with regards the conflicts. Luckily, I saw my Consultant the next day so he sorted everything out from there.

Regarding point 10, this is mostly an issue at GP surgery's or when seeing practitioners from disciplines other than Nephrology (my normal consultant and department). Because of the Lupus, it seems that other practitioners are sometimes 'scared' to treat you because of the complexities of the condition. I often get 'you should contact Dr*********' (my consultant) or 'i'm not sure, talk to Dr*********'........many comments to this affect, which I can understand, but for one, it isn't possible to run off to Nephrology every 5 minutes, nor is it fair on the department; and secondly, how can I be expected to have confidence in other very competent practitioners, when they don't seem to have the confidence to have a role in any other elements of my care.

I don't know if I've explained this very well ahah! :)

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Sounds frightening having a DVT; definitely not helpful to then be in the middle of the disagreement. Yes I think being 'scared' of us and the complexity often leads to the quick deferring to your main consultant by all other Drs. Thank you - you did explain it very well!

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I had a recent freaky experience with point 8. Not at all pleasant being used as a pawn in Doctors arguments.

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yes " i cannot help you" for me too, x

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Because of brain fog I find it difficult to take in what Dr's say at appointments and often have questions by the time I get home. Rheumatologist doesn't help by always being I a rush.

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Thanks Suzannah, when you say the rheumatologist is always in a rush, is that due to not having much time with them or do they do anything/ say anything that makes you feel rushed?

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She gives the impression she needs to be somewhere else and although she sometimes answers my questions she also ignores some. She makes me feel as if I am taking too much of her time if I ask her to go over blood tests results or scans.

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Thanks Suzannah, does that make you change what you tell her about your symptoms? Or change how many questions you ask?

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Yes, I wonder what the point of the appointments are, when she won't listen or do anything about the problems I have. I sometimes feel she won't test me for things because if it turns out I have something she can't treat then she has wasted time and money testing. but from my side if she doesn't test for things how does she know whether or not she can treat me.

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Positives: being believed, taken seriously, appropriate action taken, kindness, not rushed, not made to believe "its all in your head", being a real, truthful and sensible person who wants to genuinally help people. And I'm mainly taking about my lovely GP.

Negatives: not looking at you and either writing or typing instead, not being interested, making people feel like they are wasting their time, touching you without permission (and making you jump out of your skin!), talking down to you, blaming you for their faults, normalising not normal things, gaslighting, not apologising for lateness/mistakes, etc. Basically obvious that they hate their jobs, you are wasting their time and they don't care at all. Here I am talking about psych nurses mainly and a rhematologist. Do we deserve better - yes I believe we do. :-(

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That does sound like a lovely GP! How does that make you feel emotionally/ mentally having that support?

When you say normalising not normal things and gaslighting, can you explain a bit more what happened (only if it's not upsetting and you're happy to)

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Yes I am so lucky to have a kind GP, she makes me feel on her level and never talks down to me, which is the exact opposite of psych nurses (generally). They are the ones who gaslight and confince you that you are imagining your physical symptoms and it is all down to anxiety, sadly then you start to believe it thus affecting your mental and physical health detrimentally.

They normalise things such as domestic abuse and make you feel like you are overreacting and pathetic.

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all about that eye contact. x

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Two positive ones, only positive ones I can think of at the moment. They were both from the same nurse specialist. At our first encounter she breezily prescribed, and set me up, for regular supplies of extra absorbent Tena Ladies to be delivered to my house to help me handle urge incontinence. That has saved me £s and moments of nervousness and embarrassment.

Yesterday the same nurse explained I would need to carry out bowel irrigation every day for three months and a professional would come to the house to show me how to do it correctly. Again, this is an NHS prescription.

All of this was overwhelming and I cried because I felt like a leper. Then she cried with me. Very rare empathy. I’m trying to track down how to make sure her management know she is a ⭐️

Too many negatives, especially when I was lost in the system and did not see a rheumy for 18 months. Shrugs all round about that.

Some Community Mental Nurses are the laziest people I have encountered. When I was having therapy I passed their rooms every time. All I ever heard was personal gossip.

Not copying letters to me, although I ask , and they are supposed to, so I have to look at my GPs portal to discover I have developed scoliosis.

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Oh that does sound very overwhelming and lots to cope with. So nice she was so helpful and showed such empathy. Do you think there's maybe a difference in empathy between nurses and doctors or just down to the individual personality?

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Firstly, warning! This will be long!

I'm still going through the process of diagnosis. I first noticed signs of something not being right when I was 20/21, and I will be 30 in October. Up until I changed doctor's last summer, my experience with the medical profession had been pretty traumatic, and it's had a lasting impact on me. With my new GP I'm building a positive relationship but it's taking some time to undo some of the damage.

So, let's start with the bad!

I had been seeing my last gp since I was 15, and I should say he was a thoroughly nice, very personable man. The problem was that he did not hear me speaking. In all the years of me seeing him, we never had a discussion. He had a monologue, and the context of his monologue was that I was mentally unwell. Any symptom I presented was explained with his belief that I was anxious and depressed. I had been treated for depression historically, and he could not move on from this. I slowly lost the ability to assert myself and it completely erroded my self confidence. I attempted to make a stand once and said the amount I was sleeping was not normal for a person of my age (at that time 24). He asked if it was possible that everyone had these struggles, but that I was maybe less able to cope. I became so frustrated that I made the mistake of crying, at which point he commented on my tearfulness, and passed me a depression questionnaire. I stopped being able to be honest with him because I needed him to stop focusing on my mental health, and when I eventually did become depressed because of how awful I had felt for so long, I felt unable to to tell him. A little while later, I had been diagnosed with fibromyalgia and prescribed nortryptaline which wasn't helping. He suggested adding an SSRI to the treatment as he said it would support the nortryptalines effectiveness. When this didn't help I asked to come off it again, and he said I hadn't been on it long enough to stabilise my mood. I had to tell him that's not why I went on it in the first place. He never knew why I was there, even when I was there for follow up appointments etc. I always had to tell him what was going on.

The damage my relationship with that gp did was catastrophic for me. I started to doubt my own sanity. I paid for 18 months of private therapy to try and fix this chronic underlying mental health problem. He had me convinced that I was subconsciously making myself unwell. It destroyed my relationship with my partner, who struggled to believe me when the doctor didn't. There seemed to be an overall opinion that I was 'emotionally fragile' which couldn't be further from the truth. I developed severe anxiety about going to the doctors. I would plan and rehearse what I was going to say at appointments. I started having to have my mum at appointments to help me stand up for myself. It was with the support of my new partner that I moved to new gp last year, and that's where the magic happened!

The good!

This doctor is the exact opposite of what I thought I would like. He is gruff and blunt and very to the point. But he LISTENS to me. When I walk into that room, we have a 2 way conversation. There are no assumptions. At my first appointment, I went in with my anxiety ridden rehearsed speach that covered a number of concerns including my thyroid and immune system. He told me he disagreed, but asked where I had got my information. I left that appointment and cried in the carpark because I thought 'here we go again'. I was convinced they had stamped some big hypochondriac sticker on my file. But he called me back in a week later to say he had done further reading and he thought I might be right. His openess to learning about my health has been a revelation to me. He doesn't pretend he is the be all and know all. He admits when he's not sure. For the first time I feel like I am part of a team that is trying to make me better. We're both on the same side. It's not me against him. He also seems completely against the idea that I should just have to cope. I go in and explain how things are, and he says that's not good enough. I never leave feeling like I need to pull myself together or just need to get on with it, and I feel validated and stronger than ever as a result.

It's taking some time to recover from the historical stuff. I am constantly on guard for him to undermine me or fob me off. I request copies of all my blood work and have major anxiety about doing it because I'm sure every time I do it sets of some kind of 'health anxiety' siren in the back office. I'm unfairly suspicious of what gets written in my referral letters. I'm not sure I would be ready to talk to him about my mental health yet. But he is consistent and honest, and it's helping me find my feet again. His personality was scary at first because he is so matter of fact, but in the end personality didn't matter. It was the dialogue, not the monologue. I have made more progress with him in 8 months than in 8 years with the last doctor. It turned out that when new GP listened and started looking, I was low level hypothyroid (with very high antibodies), vit D deficient, folate deficient, borderline low B12 and Ferritin, lupus anticoagulant positive, amongst others.

Listening hands down makes all the difference!

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So sorry to hear you had such a hard start to your diagnostic journey. Our research is showing that happens a lot but sharing stories like yours will hopefully raise awareness of the damage that can be done and the importance of listening and belief. Thank you very much for sharing your story.

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My first Consultant discharged me back to GP once Hydroxychloroquine was prescribed. No follow ups - dismissed, bewildered 😳 who keeps an eye on me?

The Dermatologist he referred me to asked me what I was doing in her clinic? This in front of student and her clinic nurse. I have hair loss and warts on my legs and other symptoms of Discoid Lupus I replied., and the Immunology Consultant upstairs sent me to you. “Well you jumped the queue” - what? Examined my bald patches and said “well that won’t grow back” . Asked about my skin she told me it was “my age” !! She Was irritated throughout - wrote a note to her nurse who handed it to Receptionist - my follow up appointment was for 5 months ahead? Cried in the car park and felt old and useless.

First Rheumatologist told me after glancing into my mouth and looking at my eyes that I didn’t have Sjogren’s (I do). My swollen joints and pain were to be expected at my age - again ! Discharged back to GP. No follow up - he was so dismissive - cried in the car park - again !

I was 68, fit, active and full of life when Discoid Lupus and Sjogren’s arrived. The biggest damage to me isn’t this awful, incurable illness but disinterested medics and ignorant GPs, and yes, ageism.

I take Hydroxychloroquine, and see a Registered Medicinal Herbalist who treats the whole of me. He keeps me as well as can be expected.

My last NHS Consultant was on the phone for most of my time and then forgot to make promised referrals to 2 other Departments. That was 5 months ago, I still haven’t had a follow up from her. I suppose it is because I am 72 now and dont count as worthy.

I run a support group for Sjogren’s- every lady in the group has a similar story to tell. We are dismissed over and over, is it because over 90% of sufferers are women?

This is no exaggeration, in fact, very edited.

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Sorry to hear you're had such a tough time accessing support. You say you feel your age and being female makes a difference to being dismissed. Can you write more about why/ what's happened to make you feel like that please (only if you're happy to). Also do you feel Sjogren's is maybe even less understood than lupus?

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It isn’t just me or the women in our group that have felt dismissed. If you read the posts on this website it is so common. I have been told after just a glance, my skin condition is “make -up allergy”. I have an obvious bright butterfly ! When you are a mature woman you know the difference between allergy and something else - I have heard the expression ‘it’s your age’ many many times from Doctors and Nurses. Again, I know the difference between age spots, skin damage and obvious warts over arms, legs and chest and eventually my face. The awful night sweats were dismissed as - ‘you can have hot flushes for many years ‘. No, they stopped a decade ago or more, this is something else! This was a Rheumatologist telling ME about menopause! At 68!

I really don’t understand why Rheumatologists are given the lead in this illness - surely there should be Immunologists looking at us.

As all but one of the people I have seen are men there is a definite feeling of “there there dear”

When I am spoken to like that I feel humiliated and when I am told it is my age I feel worthless and of no use.

I have found that Sjogren’s is little known and definitely not understood.

I am a sole carer and I have had to take Sertraline caused more by my constant fight for help/appointments/ understanding.

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I do think women have it tougher .x

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Thanks - I just don’t think that men would be given such attitude by Doctors ! X

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Sorry you've been through this. Yes, we've found a lot of females in our study were told their lupus/CTD symptoms were initially just due stage of life 'busy mum' ' just normal menopause' 'age related decline' etc and felt patronised/ dismissed. However, it seems men often don't have it any easier with the journey to diagnosis and also get psychological/ mental health misdiagnosis. It's possible that because these diseases are less common in men, sometimes the delay is longer because it's less likely to be considered by the Drs. It's very useful to get the Drs to understand the impact of people feeling dismissed because of age etc. Thank you very much for sharing your story.

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Over two years of feeling very ill, failing kidneys, taking high dose steroids, being messed around by hospitals and doctors who had no idea what was the matter of me, I was lucky to be introduced to a 'new' young doctor whom I was told, might be able to help me. I joined his clinic at Hammersmith Hospital and never looked back - he revised my medication, explained exactly what he thought was the matter with me and put my mind at rest. I had Lupus and the doctor concerned was Graham Hughes. That was back in the 80's and I still remember that first consultation. I can't thank him enough for everything he and his team did for me.

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Thank you for sharing this. Can you write anymore about why Prof Hughes was so good?

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Great hospital, great consultant love a positive story. xx

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Hello I first went to rheumatology 12 years ago.With a strong family history of autoimmunity this first referral resulted in a diagnosis of primary billiary cholangitis and antiphosholipid syndrome after which I was discharged on aspirin and followed up by liver doctors.The liver consultant sent me back about 4 years later query vasculitis, this rheumatologist dismissed me said fibromyalgia something I never believed they didn't listen seemed to be totally disinterested and I was so upset by the consultation that over the next 6 years I got worse and worse but was afraid to ask to go back to be dismissed again as I felt that would be my last chance.By around 2 years ago my symptoms were becoming completely unmanageable do my wonderful GP sent me back for the fourth time to the same rhreumatology department.This time I saw a different doctor who was better spent more time listening and was willing to keep seeing me while they tried to work it out.They thought it might be gout,but it wasn't my symptoms were episodes of extreme pain attacks with between times joint pains inflammation red eye,rash fingertips swelling and many more I kept notes photos etc I was getting more and more ill.I was repeatedly told blood tests were negative for ANA but had perminantly elevated CRP.After about a year I went to my appointment by chance with one of the sores on my finger and a different doctor saw it then everything changed this doctor took over my care and finally progress was made, more tests found an antibody and other abnormalities in my blood I think the difference was this doctor listened more was more curious more willing to use his own experience and knowledge to allow for someone with an unusual presentation who doesn't tick certain diagnostic box's.Ultimately my diagnosis is still not 100% but possibilities include vascultitis, sjogrens, mctd,with some blood evidence or physical scan evidence of all! I am now on hydroxychloroquine and Azathioprine and my life is transformed.But the diagnostic delay caused me much pain and cost me my career it could have cost me my marriage too if my husband were less understanding, doctors don't factor these risks in treatment decisions and they should risks are not all just medical! How can it take 4 rheumatologists 12 years to give me adequate treatment when I have a posative ANA , ANCA MPO,raised CRP, antiphosholipid syndrome, damaged salivary glands, swollen lymph nodes when,the fourth doctor finally investigated properly . I had got so used to feeling rubbish I minimized explaining how ill I felt and how bad the pain was but I kept a ring binder of photos , notes of symptoms I did everything I possibly could to get a diagnosis.Doctors need to listen to patients and not be so keen to think that a negative test means nothing is wrong,they might just have not tested for the right thing.The presumption should be if a patient says something is wrong there is if they can't find it it DOESN'T mean there's nothing wrong or it's a middle aged depressed woman.

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Thanks Jane, sounds a very tough journey to diagnosis and so many people are saying the importance of listening and believing the patient. When you say you minimised how ill you felt, can you say why you did this and was it just to yourself/ family or to Drs too? Do you think it was because that became your 'normal' and/or because you'd been dismissed before? Has the way you were treated changed how you behave with Drs now do you think?

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I think I minimized how ill I was because got worse slowly over years, initially some symptoms were suggested to be due to my liver disease, and some were due to that especially fatigue.As my symptoms got worse I got used to living that way took painkillers and altered my life working less and eventually giving up I got so used to the pain I just lived with it.I trust my current rheumatologist but having moved house now travel and stay in hotel in order to not move hospital.

I do not trust rheumatologists as a profession.

When I see other doctors I feel like I have to explain I worry that something like what happened to me in this might happen again I hope it won't it was so awful I only realize quite how bad now, at the time I was struggling so much.

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So many of us with this diagnostic journey. Pleased they finally helped you but it is insane that this happens so often plus your bloods results were flagging. x

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Hi my rheumy dept had a new consultant take over from a orthopaedic hosp. From the first app he was rude and gave me no positive feedback to anything I had to say so left that app feeling lost and not valued as person. So had another app several weeks ago and once again he was on top form for being rude I waited 1/12 hours to see him and the guest thing he said was we only have 15 minutes and kept saying it! But if he had kept quiet and given me the opportunity to tell him if my concerns he may d could have given advice my knee was swollen and all he could say which issue do you want me to deal with today? I don’t think he should deal with people who have complex issues things are tough enough hence why so many don’t bother with following medical app up. I have now transferred over to another dr so fingers crossed I will get an ear and time to talk about issues and then I can help myself!

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Definitely fingers crossed for next time - listening is so important

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Hi

I was only diagnosed with Lupus in 2018 when my gp finally put all my symptoms together and arranged for blood analysis.

The clinical nurse specialists on our local rheumatology helpline have been great, let's start with a positive!

I've only had one rheumatology appointment with a consultant and at this appointment he looked at my referral notes more than at me, examined me quite abruptly then said I'd need to start medication, stay out of the Sun and wear factor 50. He gave me a piece of paper to hand to the HCSW which identified what information leaflets I needed. He never even said at that point that I had SLE or explained what lupus was and what it would mean to me as an individual. I am going to be better prepared with my own list of questions for my next appointment.

The appointments at rheumatology are like gold dust and I feel I've been neglected. I had to come off hydroxychloroquine after 3-4 weeks and it's now been 3 months since. My next appointment is in April and I so hope that I can finally start some treatment that gives me symptom relief....and that I don't have to wait another 2 months for a counselling appointment before starting.

So for me a good experience would be one where things are explained clearly, questions answered, solutions presented and discussed in partnership and that appointments are timely.

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excellent so please top read this. xx

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Thanks very much for telling your story. How did it feel emotionally to not be told the diagnosis and have to find out from the leaflets?

Can you write what makes the clinical specialists great please?

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It was quite upsetting, lupus is a complex condition and the leaflet though helpful made me feel a bit shocked about it being my diagnosis. The clinical nurse specialists show empathy and when I rang re painful mouth sores they had a response for me within 24 hours. They explain things to me (I've only had 3 contacts with them) where the consultant didn't. The helpline seems to be well run, they always ring back.

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I can completely understand how shocking that must have been. Is there any reason you can think of why the nurse specialists showed empathy and explained things whereas the consultant didn't?

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I felt the consultant didn't really seem to have any people skills whereas the CNS did. He obviously knows his stuff medically but is unaware of the impact of his approach on those sat in front of him....

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Knowing that you've been REALLY actively listened to and acknowledging that, as Lupus presents in each individual in a unique way, that you are forced to become and ARE the expert on your own body. So important, when most GPs are unaware of the implications and unpredictability of this chronic condition.

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Do your Drs do that active listening with you Lupieibbie?

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My first Rheumatologist definitely did but unfortunately he moved away from the area for a new job. Much less so now from current Rheumatology consultations. Virtually all GPs I see about SLE related issues make me feel that I'm 'making it all up' and that they know best. Perhaps, my perception is now skewed as a result of the compassion and expertise of my first Rheumatologist. In any event, I now avoid seeking primary care help unless I absolutely have to.

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Can you please explain what the first one did to make you feel like that and how he showed compassion?

Also how the recent ones differ?

Thank you!

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He was always very straight with me and if he disagreed with what I was saying he would voice that and explain his position. I felt that I was being treated with respect for my ability to understand rational discussion and make the best decisions for me. It felt like a partnership, working to get the best result from the meagre treatment options available.

His commitment to my care meant that he made himself available at all times, regularly answering emails for help within 10 minutes (that's above and beyond!). Also, of note, was when he came to check how I was, mid-evening on his way home, as I was in a ward recovering from yet another lumbar puncture.

My life now comprises of continually chasing appointments, follow-up letters and results, prescriptions, required blood monitoring for immuno-suppressants, etc, etc, etc. Unfortunately, his leaving seemed to coincide with a downward trend in the quality of the primary care I have access to. It's all SO tiring and mentally draining especially when the fatigue monster comes to call daily.

Sorry, to moan so much but sometimes I wonder which is worse .... lupus or sadly declining health care.

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Thanks for sharing this lupieibbie. That sounds like fantastic care from your first rheumy and a common story about overall health care and the need to chase everything when you're very unwell and fatigued - so hard.

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I saw a professor of dermatology recently at skin tumour clinic. I didn’t know I was going to be seeing her or that this was tumour clinic. The named chap didn’t seem to be there. She was very familiar to me until I realised it was because she looked like the actress Maureen Lipman!

She asked me why I was using a seat stick and I explained about my neuropathy. She didn’t know that Sjögren’s is a systemic disease or that it can often affect the nervous system - but seemed genuinely interested. She looked at the relevant marks on my face before asking me kindly to strip down.

She diagnosed Actinic Cheilitis and a precancerous area on my lip and gave me special cream to burn through it. She felt other marks were telengecstasia, suggesting an overlapping connective tissue disease rather than ageing or Rosacea as other doctors had diagnosed.

What impressed me was that she was very inclusive and found previous lab photos taken by the photographer and showed me - explaining the significance of the hugely magnified images on her screen to me.

Later, after I had been for further photos, she came and found me to confirm my address and said I would get prints - she said she always sends these to all her patients prior to treatment. I left feeling that this was extraordinary - which it should not be. But I was doubtful that these prints would ever materialise.

The cream was waiting at my pharmacy next day and within five days of my consultation I received a letter from her cc my GP, rheumatologist, CTD vascular dr and my neurologist, explaining everything we had discussed in very accurate summary and confirming instructions for the special cream and date of my next appointment with her. Also there was a large package in a separate envelope containing the relevant close up lab photos.

I find it hard to explain how refreshing, actually moving, it was to be included in my care for once - and so promptly. I had previously written to my hospital board members asking for them to change their policy to include all patients in clinical letters by default rather than leaving us to request this of individual doctors during appointments or otherwise have to ask our GP for copies. I received a patronising letter back from one of the non executive board directors explaining how this was the ideal and should but probably won’t happen for a while. It read to me as lip service.

So it meant a lot that an eminent professor (she advises Cancer Research on skin cancer) would take such trouble to ensure this happens for all her patients.

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Thanks Twitchy, she sounds very good. When you say it was refreshing to be included in your care for once and that you're often not copied into letters, how does that feel please when you're not included?

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Excluded, not trusted - like I’m not an equal partner in managing my own conditions.

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I feel I have a positive appointment when my rheumatologist (or my gp) appears to know the important things about me, listens to my updates of how I feel, answers my questions and doesn't rush things through.

My (one and only) bad appointment was last year when I was seen by a nurse (instead of my rheumatologist) who wrote down everything I said and never answered any question. 'Call us if you get worse' was the only thing she told me!

I must say that from the 19 years that I have been looked after by my local rheumatic hospital, they have been exceptional in the service they have provided, including when my specialist met me urgently on Sundays at the hospital to treat me when I needed it most!!!

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That does sound exceptional to meet you on a Sunday and so important, like you say, to treat when you need it. How does it feel knowing that your specialist is there when you need them?

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It happened a couple of times during 2008/9 when my heart was under attack because of lupus. The care and support I received then aided my recovery greatly. I consider myself lucky; I could have died.

Yes! It was exceptional and I am for ever greatful to my then rheumatologist!!

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You say 'then rheumatologist'. How did it feel after such good care when he wasn't your rheumatologist any more? Did it take some time to develop a close medical relationship with someone new? Thank you!

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The good

1. Almost 16 years ago as I got diagnosed, when I first saw rheumatology...... that consultant thought to do the immunology ANA etc blood tests ...... I'd had around a year of blood tests including loads for thyroid but no one thought to do the ANA, depsite having serious fatigue & almost being told it was CFS/ME .

I do think it "bad" that ANA isn't done more "routine" / even to rule out Lupus in cases of persistent fatigue / possible ME/ possible fibromyalgia

2. Same consultant thought to press

me on "getting freckled face in sun" every summer, and my known episodes of what everyone else had thought was "sun stroke" ...... Even I hadn't seen I had sun sensitivity

3. Excellent GP care always willing to listen, and take me seriously provide care they can but refer me for rheumatology opinion when symptoms change or become more troublesome. I also like my GP current system where can order repeat meds online and it goes straight to pharmacy Plus I like that you can arrange a phone consultation which is usually effective, quick and it's really useful for those "quick queries"

4 Rheumatology team , consultants, nurses, physio all have really helped me loads over the years ..... Again they listen , encourage you to ask questions and deal with you fantastic. Currently they've even started sending me a copy of letter they send to my GP which is a new thing for me, I find it useful

5. My current consultant deserves a particular good as he still takes me seriously even though I'm "mild and stable", have lupus disease activity under really excellent control. My recent SLEDAI was 0 but consultant still listening to me, referred me to both physio for extra pain management, and opthalmology as guidelines have changed regarding the hydroxychloroquine eye tests, and he totally acknowledges that even mild and stable excellent SLEDAI that I do still have severe fatigue and "limitations due to lupus"

6. An add on to my rheumatology team that deserves a specific mention ..... Occupational therapist she had loads of time ( much better than the 10 mins every other medical professionals are expected to take. Occ therapy helped get me "disability aids" and have good advice on how to pace

The only bad with this one is I didn't get refered to occupational therapy until around 14 years post diagnosis ......I hope it's because it's now a new thing that has been introduced with rheumatology having their own team, plus new "guidelines for good lupus care", rather than I was just missed this early in diagnosis

The bad , in addition to some notes made above

A . Not being told things when I got my diagnosis such as not been given information about the charity Lupus UK, not being told that there's not much medication can do to stop the fatigue, and having to "get on with it all" pretty much on my own in aspects not "medical" such as "grief" over diagnosis, lack of counselling over losing my career due to fatigue and exhaustion ......it would be great if newly diagnosed got signposted to all support that can really help those with Lupus

B. Mental health professionals having lack of understanding of Lupus , mis- diagnosis when NPSLE symptoms present, general "terrible way" that the mental health professionals talk to you when you're in mental health crisis ( it's so much different than way professionals deal with physical symptoms) and I think it's even worse because you're in mental crisis so actually what you need is to be listened too, your opinion and symptoms not "dismiss", and need people to be "gentle" and understanding

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Thanks fabwheelie, that's a great summary of the positives and negatives. So true that 'mild and stable' does not mean lives aren't still be so changed by the disease and still need medical support. If you're comfortable, please can you explain more about what happened with the NPSLE symptoms and the mental health professionals? I think a lot of people get these symptoms and are sometimes too afraid/ embarrassed to talk about them so the Drs don't understand how common it is? I have NPSLE symptoms too in my worst flares and spent years not telling the Drs the worst of it.

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Hello. Firstly I'd like to say that even though I put a "bad" as in way mental health professionals deal with you, please don't let that put anyone off seeking help. My GP does most of my care these days, including for my mental health and she's great, plus there are some lovely people in mental health services, (I've just had poor from some of them particularly those "higher up" such as some psychiatrist, and I had years and years where no one a acknowledged that the mental health issues were due to the Lupus)

Please do discuss your mental health as well as your physical with your drs. I am in the habit of talking about both my physical health and mental health with all my Drs, and I think it's a useful thing for everyone with Lupus to get in the routine of doing

I personally also think that if you get the rest of your lupus "under control" that can have a big impact on all aspects of your mental health.

My my worst NPSLE symptom is that I get hypomania. Drs now put that down to NPSLE psychosis, as they think I also get "lupus mood disorder" ( I myself am a little unsure about that "mood disorder" diagnosis myself or what they really mean by that, but I think drs mainly used it to move forward from some previous poor diagnostic labels given to me in the past, and to "justify" the medication I need); I also get bad brain fog/ poor cognitive functioning/ and lack concentration particularly when I flare up; plus I've had a few episodes of what was believed to be "sunstroke" which left me very confused, but which is now thought to probably have been sun sensitivity with lupus giving "NPSLE acute confusional state" ...... I think it's the combo of all the above that led to the NPSLE side of diagnosis.

I'm very willing to discuss this further @MelanieSloane , particularly any personal experiences, and those with my mental health professionals, however I thought rather than be a ridiculously long post I'd use this reply as more general. Perhaps it would be worth doing a NPSLE community survey question on mental health / NPSLE in it's own question?

Apparently NPSLE is very common, however it's not always easy to distinguish the mental health effects that are an actual symptom of Lupus, and those that are due to learning to cope with diagnosis, the "limitations" caused by the disease, others not really understanding etc

I've given something like the following information below, elsewhere on social media so apologies if you're seen something like this elsewhere

The charity Lupus UK have loads of good information including a booklet / or you can also download it, on Lupus and the brain

lupusuk.org.uk/publications/

Neuropsychiatric SLE (NPSLE) is the term used for a number of different Lupus symptoms where the Lupus gives neurological and psychiatric manifestations

Neuropsychiatric symptoms are thought to affect nearly half of the patients with systemic lupus erythematosus; however, it's not always given as a "extra diagnosis" in some cases eg if get headaches, brain fog , tingling sensations, tremors, then drs don't always mention NPSLE. Plus the symptoms of NPSLE may range from mild to more serious ones. I personally think drs don't like telling patients that your "mental health is being affected", and some patients don't like the "mental health label" or have had poor previous experience where Lupus symptoms getting diagnosis etc have not been taken seriously and patients made to feel "it's all in the mind" so I do think it's possibly a "tricky tightrope" to walk for drs dealing with lupus and the mental health, so I can see it from both sides

Often unless there's a clear need (eg trying to distinguish if you have Lupus or MS) most lupus patients don't get brain scans/ neurology investigations (for example, I've only ever had psychological / psychiatry / mental health appointments never any brain scans etc)

Some drs also sometimes refer to CNS lupus, in cases where it's clearly seen that lupus is affecting the brain ( often when linked to having anti phospholipid antibodies, I think possibly because the APS is possibly more likely to give NPSLE symptoms)

For me I never had any mental health problems prior to getting Lupus, but then started getting problems ( in particular hypomanic behaviour). It took a long time before drs and psychiatrists put all my symptoms down to NPSLE / "Lupus mood disorder"....... I've had headaches, bad brain fog ( cognitive problems occasionally to the point where so bad drs called it "acute confusional state",), plus I've had a few times I thought it was "sun stroke" giving me confusional state ( now believe those were sun sensitivity induces lupus flare ups, ) Plus I've had what drs thought might have been bipolar disorder / non specific affective disorder ( as I've had both depression and mania), plus I've had depression episodes / sleeping lots with fatigue, that some drs have got "mixed up which is which" ..... That's now thought to be lupus NPSLE "mood disorder", and the main symptom for me is that I can get bad hypomanic attacks (drs believe the hypomania is NPSLE psychosis). Hence I take a mood stabiliser.

.. I'm on Quetiapine, which works as a mood stabiliser, and it's really helpful in stopping / reducing severity of my hypomanic symptoms, but it also works to also help me sleep as it affects your serotonin receptors. The added "bonus" I've experienced since being on the Quetiapine is that it's really reduced my feelings of non restorative sleep / very groggy in a morning ( I still get that bad every morning but the Quetiapine has helped that by around a 50% to 60% improvement

It's not always easy to distinguish the mental health effects in Lupus, call them NPSLE, or " true brain involvement" , as just coming to terms with diagnosis and "limitations" eg due to fatigue or pain stopping you doing things, can all adversely affect your mental health. Plus depression can be very common in Lupus as an actual symptom ( and not just as you "grieve" the "old you/ the life you imagined you'd have" )

However it's worth always mentioning your mental health to your drs as mental health is just as important as physical health

As an idea of the kind of symptoms involved in NPSLE, the Lupus UK info is useful. Plus In 1999 The American College of Rheumatology (ACR) expert-committee, identified 19 neuropsychiatric conditions, termed ‘case definitions’, in NPSLE patients, including 12 central nervous system (CNS) and 7 peripheral nervous system ones See list below

..

Central nervous system

1. Headache

2. Seizure disorders

3. Cerebrovascular disease

4. Demyelinating syndrome

5. Myelopathy

6. Movement disorder

7. Aseptic meningitis

8. Cognitive dysfunction

9. Mood disorder

10. Anxiety disorder

11. Psychosis

12. Acute confusional state

Peripheral nervous system

1. Mononeuropathy

2. Polyneuropathy

3. Cranial neuropathy

4. Acute inflammatory demyelinating polyradiculobeuropathy (Guillain- Barre syndrome)

5. Plexopathy

6. Autonomic disorder

7. Myasthenia gravis

However a few studies, aimed at validating these "ACR-NPSLE case definitions", did not find them to be effective in differentiating NPSLE patients from those with neuropsychiatric manifestations not associated with SLE , so it shows how difficult it can be in the whole area of NPSLE, mental health and Lupus

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Some useful info here. Thank you for writing x

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That's fantastic information - thank you for sharing your experiences too, a hard topic sometimes to talk about. Yes good idea about doing a survey on NPSLE/ mental health side of lupus. I have been meeting with the lupus professors to discuss research directions in terms of patient experiences and one of them said he thought research into patient views and experiences of NPSLE would be most valuable as so many Drs are unaware of how many people are affected - and how often it is the direct effects of the disease on the brain and is almost always 'cured' (unfortunately only temporarily often like the rest of the lupus symptoms, until the next flare) by getting the medications right. He described how he introduced it gently and non-judgementally to his patients, especially those with psychosis and hallucinations from the lupus, by asking them if they'd been getting nightmares and then if the nightmares, seeing things etc had started happening in the day a bit. All very gentle yet getting them to open up. Thanks again for sharing, maybe we need to do a whole separate research paper on the patient stories of NPSLE?

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A separate NPSLE paper would be great MelanieSloan I get hypomania so here's a link for information about the kinds of symptoms I get

mind.org.uk/information-sup...

I think some of my most negatives regards mental health professionals, is that in crisis I just need my basic needs met first, but drs almost always want a very detailed history.

I compare it to the anology that if you went into A&E with a severe bleeding leg, they'd be more concerned with stopping the bleeding than knowing why you're bleeding, or asking how many other times in the last 15 have you seen someone about bleeding, was it the same leg, have you had similar cuts in other parts of the body, why are you getting anxious and irritated that no one seems to be giving you a dressing to stop the bleeding or sorting out someone to give you stitches etc etc......... Whereas most psychiatrist first just seem to want to know your mental health history, but don't always seem to accept what you're telling them, and I don't think they do always address the "emergency need first".

For example, My first hypomanic episode I actually got "sectioned under mental health act" as I got to the stage that I wanted to leave just so I could go book a hotel for the night and try get some sleep. I didn't feel the services I needed were being offered, and although I do know I had bad mental health symptoms, hypomanic behaviour with no insight at the time, and I am probably "complex" regards my "lupus needs". I do still feel the "section" came about due to lack of "mental health support", so it was a genuine feeling that "they couldn't help me", not me being "mental"

Also in general the mental health professionals seem to have very little understand of Lupus ( this does surprise me as mental health issues are very common in Lupus ), so things like "basic lupus needs" such as needing rest, finding things exhausting, needing to make notes because of brain fog / poor concentration, are often not considered, or come across as "mental health symptoms"

My case is complex I know, because I'm more likely to have mental health crisis, when I flare up , so other symptoms such as extra brain fog, and exhaustion (often then also a viscous circle of hypomanic insomnia hypomanic over activity, etc compounding lupus fatigue) do all play a part in my case

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Your posts are so interesting to read. Thank you for all your input.

I often find when I’m feeling unwell I start ordering stuff online and it makes me feel better, only for it to turn up and I send it all back because I just don’t need it! Doing this confuses me a lot. I do laugh with my children though when a bread bin turned up, I’ve never owned one in my life 😂 of course that got sent back x

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I can get times I impulsively shop / go on "spending sprees" when I'm hypomanic. These days I hide my credit card when I've the insight to know that I'm manic. I also have always preferred bargains and charity shops so at least if I do spend it tends to be not an expensive mistake. I did once buy loads of butterfly things in a "mad shop around town" .... making the association with Lupus and butterfly symbol, hypomanic shopping to "help myself" ........I now know it can be one if my "early mental health warning signs" if I'm drawn to "shinny things" and butterflies in particular

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Thanks so much fabwheelie, posts like this can help all of us (patients and doctors) learn about NPSLE, definitely a separate research paper called for as it's so misunderstood and misdiagnosed.

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FANTASTIC 🌟🌟🌟🌟🌟 REPLIES FW: THANK YOU 💐💐💐💐👏👏👏👏🍀❤️🍀❤️🍀❤️

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Awwh thanks Barnclown that's so lovely of you to say

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For me appointments with my GP are always positive- she listens to me, believes me, gives eye contact, notices changes in me physically when I walk into the surgery, is striving with me to get a diagnosis, has my back as keeps correspondence up with Rhumetology when she’s not satisfied, the list goes on! She is one of those drs that makes the NHS so outstanding . My cardiologist is also someone in that category.

The negatives sadly have been all but one of my four rheumatology appointments where I’ve seen a different person each time. The worst being when the registrar answered ‘I don’t know’ to every question or when the dr was looking at list on webmd of lupus symptoms asking if I experienced them. He didn’t listen, he summarised saying totally the opposite to what I’d said - I was glad my husband was there as he could correct him when it got embarrassing at how many times I corrected him! He didn’t look at me (dr, not husband!), stood by the door when I asked a question after he’d summarised - it made me feel hurried and that I was wasting his time. He also gave mixed messages as he asked if I’d thought about not wearing sun cream when I’ve been told I must wear it but in the next breath said I might be able to get sun cream on prescription.

The appointments are so short, there are so many questions when you’re trying to get a diagnosis/symptoms under control it’s so hard to put your main concerns across. Sometimes I feel as if I’m an inconvenience.

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Thanks yellow5, that's interesting to hear the difference between your GP and rheumatology experiences. Listening and belief are coming through in these studies as so important and it's fantastic you have that with your GP - hopefully next rheumatology will be more positive.

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I could write a book frankly, but I will keep it simple.

Bad appointment:

1. No eye contact, and no introduction to whom I am seeing.

2. Condescending and patronising questioning like e.g. 'now tell me about your little ache and pain?

3. Not allowing the patient time to at least ask one or two questions, without the cursory look at the watch, or cutting you off mid sentence with an opinion when you have not even given a full picture.

4. Eagerness to dispense pills, namely antidepressants, the so called cure all, but in reality to get you out the door.

5. Rudeness, arrogance, dismissiveness, and general all round lousy bedside manner.

Good appts

1. Eye contact, introductions, a smile, and empathy

2. Attentive to what you are saying, writing notes is always encouraging when a Consultant does this, shows they are listening.

3. Acknowledgement, even if they don't think they are the consultant you need, and refer you elsewhere.

4. If you are before the right Consultant, empathy, and acknowledgement are like gold dust, some patients have suffered for years, so if a patient breaks down, it is usually relief, a consultant who can look you in the eye and empathise, again priceless.

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In a nutshell (albeit a large one !) WELL SAID X

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Thanks so much LupusKaren, a very good guide there.

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I think a lot of this is similar to what other people have already said. I have ANCA vasculitis rather than lupus but I am seen at a Lupus Centre of Excellence which also sees vasculitis patients. I feel quite fortunate in that I have had mostly positive experiences so far. However, there are three negative experiences that do stand out (but out of dozens of consultations I feel like that's actually quite a good record).

I've tried to link together the key themes for the good and bad experiences below:

Good experiences:

* Clinician is prepared

- Has read the notes before hand (and if not is honest and admits they haven't). Especially important if it's someone I haven't seen before e.g. registrar instead of consultant, I'm not expecting them to read my entire case file but at least the last clinic letter.

- Any equipment they need is in the room already (e.g. opthalmascope, peak flow meters, prescription pad, pen etc)

- Clinician sends notes to the GP promptly and weeks rather than months later

* An action plan is agreed together and it is clear what is happening, when to expect it, from which department and ideally why

- Referrals for scans and tests (e.g. "I'm sending you for an EMG / NCS because you have some difference in the feeling of your feet, it will probably come back normal as it is quite hard to pick up but I just want to check. You'll get a letter from the neurology department")

- Any new drugs, what are likely side effects, how to mitigate them, any monitoring and how long for the treatment to "kick in"

- Review date and with whom?

- If the GP has to do anything it is clearly stated

* Clinician listens to what you are saying, explains what they are doing and asks for your consent before touching you

- E.g. Is it OK if I shine this light in your eyes quickly? (Rather than just instructing the patient to sit still and then blinding them with their iPhone as they forgot their scope)

- This applies equally to doctors, nurses and HCAs and phlebotomists. I've lost count of the amount of times a nurse or HCA has called me into a room to ask me to sit down and then ignored me for at least 5 minutes while they look at the computer, and then produced a specimen container or BP cuff without explaining who requested it, why, or even where the loos are

- Clinician notices if a topic is sensitive and changes their tone of voice or the way they are talking about it, if they need to continue that line of questioning

Bad experiences (pretty much the opposite):

* Clinician is not prepared

- Clinicians decides to play 20 questions instead of admitting they haven't read my notes and try and make me rehash in minute detail the 3 year journey that brought me to diagnosis

- I have to prompt the clinician to ask about tests that they mentioned on the clinic notes but haven't done yet or haven't told me the results of

- Clinician wanders off for 15 minutes to try and find some equipment or spends 10 minutes trying to get someone else's attention so they can get the equipment they need

* Clinician dictates your treatment and tests without involving you

- Massive example here is of how ANCA vasculitis was first brought to my attention - my respiratory consultant decided to run an ANCA and ANA screen but only told me he was running some blood tests. Both tests came back positive and with notes from the lab but I only found out four months after they were done when the results were included as a footnote in my clinical notes as a "P.S. Likely Wegener's granulomatosis". At no point was I contacted (not even a phone call), and I couldn't get a follow up appointment with him until another four months later. I bear him no ill will for this, as I know his department is massively understaffed and overworked, but it freaked me out a lot at the time especially in combination with the fact that:

- One day later radiology called me telling me I had been booked in for CT scans that I had no knowledge of. When I called back, I was offered scans the next working day.

* Clinician does not listen or sympathise with the patient

- Line of questioning feels more like an interrogation than a conversation

- Tone of voice is accusatory - on one particularly memorable occasion recently, a senior registrar asked me "What are you doing here?", despite me having a diagnosis of ANCA vasculitis which was diagnosed by their consultant!

- Clinician repeatedly asks the same questions and interrupts me when I try and answer

- E.g. clinician notes that I am taking my steroids every other day and not every day and asks why. I explain that this is because I am trying to keep on top of the side effects and it is what the consultant suggested I do to mitigate them and the clinician then presses me to take them every day repeatedly

- Another memorable example was when an immunology consultant told me that the proposed treatment by dermatology was "unsafe" due to my autoimmune disease. I told the dermatologist this, who ignored me and tried to tell me that I did not have autoimmune disease and was totally fine to have this treatment. When I reiterated that that was the opposite of what immunology said, they said in that case I could consider myself discharged and then did so without talking about any possible other treatments

I think a lot of this is about professionalism, and the things that we take for granted in other professions but put up with in healthcare because we aren't feeling well or just want to give the clinician the benefit of the doubt.

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That is a fantastic summary of positives and negatives. Goodness, no wonder you felt freaked out. Does that mean they didn't start initial treatment until 4 months later? How does it work having multiple specialities involved - how well do they usually work together?

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Thank you. Yep, it was a bit of an anxious time! Vasculitis UK were very helpful with providing me information about vasculitis, but if anything that actually made it more of an anxious wait because I knew what I should be being treated with and everyone kept stressing that I should be being seen soon but it took forever to happen. I think the main thing that slowed it down was the fact that none of the multiple specialities actively took the lead in my care. Respiratory said ENT should take charge, ENT said it should be respiratory as they were the ones who ran the initial tests and immunology said I should see rheumatology but no one actually referred me to them! All of the specialists were telling me I needed a multidisciplinary approach but in practice they were not so keen to join the dots at the different hospitals. So it was a bit of a nightmare and I ended up seeing a vasculitis specialist privately who was able to tell me that a) she agreed about the diagnosis and b) that if my GP wrote a referral to Guy’s lupus centre then they would take care of all this in house and would actually work together. It’s not perfect at Guy’s but at least the consultants know each other and can access each other’s notes and scans more easily as it’s all under the same hospital.

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A positive appointment for me, is one where the clinicians really listen and really understand what I'm saying.

My worst experience was with a rheumatologist who I had to see for nearly a decade after the original awful appointment. I told him My mother was also his patient. He told me that lupus wasn't his "bag" and as rheumatoid arthritis was his thing, my mother was so show entitled to a better service and a better attitude from him. I was too ill to be angry at the time. I then had to suffer him for years until he retired last year. His successor laughed at me when I told her about her predecessor.

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Thanks for sharing this lupie46

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I think for research purposes you may be interested in the Myths about Lupus post on here. It's us lupus sufferers responding to brief footage from the John Hopkins Lupus Centre in the states.

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Put simply, one where you are listened to, and if the docs disagree with your take they give you good reason and don't gaslight you. I've had most of my breakthroughs in private medicine, for a reason; because you are paying they have to treat you as a partner. I wish it wasn't so and I really believe in public medicine. I just think the NHS is so busy rationing care the impetus is always to underdiagnose or dismiss symptoms.

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Thanks treetop.

When you say rationing do you mean you think the symptoms are underdiagnosed and dismissed for financial reasons with NHS care?

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Yes I think partly they don't have the time (private appointments are an hour compared to 20 minutes for NHS) and partly because new NICE guidelines, in my opinion, fudge the clinical judgement/resource divide.

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What makes a good medical appointment for someone with a long-term condition like Lupus? First, time. Second, a doctor who listens, who believes the patient's account, and who considers the patient's individual experience, rather than trying to shoe-horning the patient into a convenient, generic medical 'box'/phenomenon. Third, a willingness to work in partnership with the patient, rather than simply taking a 'I am the doctor and I firmly know best' approach.

How often does the above happen? Very rarely, in my own experience. I have a truly wonderful rheumatologist who does tick all three boxes but frequently this person is pushed for time. Which makes it difficult to tick the others. Actually, I would say the same for GP appointments. At my surgery they try to stick to 10 minutes. When I have been referred to the out of hours service, when something comes up and needs immediate assessment, I have found that the doctors don't operate under the same constraint. Result? A totally different experience - not only for me but clearly also the doctors. Having to race against the clock is so unconducive to good medicine, unless we are talking about a medical emergency/surgery.

However there is still the issue of being believed in certain chronic conditions. Or at least some doctors not appreciating that the patient is not exaggerating. Presumably this comes back to medical training and there not being sufficient emphasis on chronic conditions and/or the still prevalent emphasis, it would seem, on quantity of life. Quality is also key for patients!

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Great explanation, thanks MrsMouse. Very interesting about the time available when it's an emergency appointment.

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Our GP practice isn't great for emergency appointments either. You can discuss one thing. The GPs spend so much time telling you that you can talk about one thing only, and actually with SLE it is rarely one thing and the time they take telling you they can't talk about anything else, they could have dealt with another issue!! Very frustrating.

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Yes, this is a service offered after 1800 or at weekends at a local cottage hospital. Most of the doctors are regular GPs elsewhere too, and doing this out of a sense of duty and also to earn extra money, but who don't have to try to meet this 10 minute appointment target. It really does make such a difference. You come out of an appointment with your dignity and spirit intact, and having explained all that needs to be explained - and all due to time and the effect it has on both parties.

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Put very simply, the huge difference between a positive and negative consultation is whether or not the clinician has an open or closed mind!. X

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Hello. You know my story far too well. I think my best appointments have been private ones, but that is because my local NHS care has been so bad. It's sad that it's been this way and I am lucky that I have been able to access private care, not all in my area have been so fortunate. The doctors I have seen and had good appointments with, firstly know their stuff - they have to to win us over and when they know it, they will listen because they want to hear what you have to say and they are kind and respectful in the way they treat you. It's how we imagine all doctors to be, until having lupus bursts that idealistic bubble and we realise that not all doctors know their stuff, if they don't, they don't want to listen to you and they are not kind.

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When lupus was first mooted I rang 111 in tears as I knew nothing about it but feared the worst. I have never known the name the lovely lady at the end of the line who offered to help and contact LupusUK and ask for information to be sent to me. She listened to me, understood I was worried and was extremely kind. The information pack arrived two days later, I was and still am so grateful for her interest and commitment.

Reading the replies above about some GPs, there is a general theme of disinterest, lack of empathy, little eye contact, an unwillingness to discuss more than one ailment at a time, a refusal to acknowledge something is wrong and a "doctor knows best" kind of attitude.

I too have been on the receiving end of this kind of treatment and it is very demoralising.

Fortunately at the moment I am registered with an excellent GP who actually listens, apologises for the cold stethoscope, or causing pain whilst examining me. He takes his time in explaining things, is happy to wait if I am in tears and is very empathetic. He will consult with other doctors in the practice or give me a referral to hospital if he thinks I need further investigation.

Unfortunately I rarely see him. Like many others I end up seeing different GPs with no continuity of care, who because I am not their registered patient just seem to go through the motions. My own GP is booked for weeks ahead so it is generally potluck who I see unless he happens to be duty doctor that day.

I now only go to the surgery if I am extremely desperate.

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Most of what I would say has already been said by others so, thought I'd just add these two contributions, both of which came out of one single consultation.

This one...arising from the imperative to point out only that which can be seen...evidence...because everything else is ignored or dismissed as being nothing to do with AI disease.

Me...'the rash on my toes that disappeared whilst on high dose steroids is returning again'

Consultant... (barely looking)...'what does your GP say'

Me...'he's doesn't know. He advised that I ask you'

Consultant...'I don't know. Go back and ask your GP'.

And at the end of that 'consultation'...the come back in six months point...my increasingly concerned husband (who has never 'intruded' before) but has watched my decline, asks...'isn't there anything else you can do? Or can we come back sooner than six months time?'

Consultant's response to me...'You walked in here unaided, your hands aren't deformed, appointments are allocated on the basis of need. You can come back in six months...or you can come back in nine months'.

And that typifies the entire appointment.

So hmm....I guess that wasn't a good appointment.

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Negative: was not prepared (had my file for 6 months). Too brief clinical exam. I’ve gone through this enough to know he forgot to check places. Zero questions about lifestyle (support, resources, stress, relationships).

The one before that: negative because 2/3 of the appointment is him dictating notes. Notes of known things. It’s as if I han’t been in his office (a lot) over the last 5 years. Barely anytime to explain or address current issues. Was so spacey he wrote me a script that was for the wrong medicine at the wrong dose!

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