LUPUS UK
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Taking my own advice

Taking my own advice

I am incapable of this. Yesterday, I rang my rheumy nurse to request she sends me the results from my latest bloods and MRIs. I explained that my GP could not access them online, so she - or I - would need a paper copy. So far, so good. But then she said, "Oh, but I don't think you would want to see them. They are very complicated. Your rheumy will explain them at your next appointment."

Now at this point, I should be telling myself, "Don't get annoyed. Just acknowledge her point, and repeat your request". I got annoyed. I said , with a distinct edge in my voice, "I think I can be trusted with that information". She got annoyed and said, "Are you a doctor then?" At this point, I should have told myself, "Calm down. Acknowledge her concern and reassure her that you understand, then repeat your request". instead, I said, "I have a legal right to see my medical notes. It's not your decision to make". And immediately knew I'd blown it. "Dr X knows best," she responded icily. "He'll explain the options when you see him next"

I am going to hang this cartoon above the phone.

PS Yes, she really did say, "Doctor knows best"!

35 Replies
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That would have finished me. You had, after all, asked for them to give to your GP. And any nurse who spoke to me in that patronising tone would be the subject of a complaint.

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I should have held it together better, but when she said, "Are you a doctor then?" that pushed all my buttons! x

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None of her business who or what you are! Your results you are entitled to have them.

If you have had a chance to see them before your appointment you will be better able to discuss with your doctor.

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That is exactly what I said - "I don't want to waste half my appointment taking in my results and reports", "I am a nurse", "I want to be prepared so that I can use the appointment more efficiently"...and then I got mad that I was having to justify to her why I should see MY OWN results! x

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Really - just because she is too thick to understand the patient's results that doesn't mean the patient is too. Not many imaging technologists or lab techs who have doctorates of any sort but we do have a vague idea about what we work with. Often rather better than the average doctor...

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Hard to hold it together when feeling so unwell. Medical staff should be making allowances when patients are struggling. Lou x

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Exactly x

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I also had this problem when I went for a blood test, I have always got my results then booked in for ivig if I need one, this healthcare assistant came to me and asked why I needed to see them I explained and she shouted in front of the full waiting room ‘ she’s the doctor today!!’ pointing at me, brought the results and asked me if I knew what I was looking at, I just said yes I do looked at them told her I didn’t need to see the Dr and got up and left everyone was looking at me I was so embarrassed, I don’t know who they think they are!! My trouble is when I get angry I cry and I didn’t want her to see that. X

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Blimey I hope you made a complaint.

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I spoke to one of the day case unit nurses who knows me and like all the rest knows I make my own decision on wether I need ivig or not and she was very angry and urged me to make a complaint, I declined at the time but I couldnt stop thinking about it and I got very angry so two weeks later I spoke to someone and they were going to speak to her, nobody could believe what she’d done x

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Sheesh. Maybe we should drape a stethoscope over our shoulders next time we go into hospital? x

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We know our bodies and what we are going through better than anyone, my rheumy and I made the criteria between us when I do and when I don’t if I’m not sure I see Dr, and we should be entitled to see our results with no arguing, hope you get it sorted be well 😊x

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I’m the same, my surgery was voted the worst in Wiltshire and has just scraped a 1 star rating so are still able to practice.

After another battle with the receptionist which yet again I could feel the urge to start crying which with a full waiting room I truly didn’t want to give her that satifaction so instead I came out with I know your job must be hard enough holding on to the title of worst surgery in Wiltshire but don’t you think it would be easier if you stopped aiming for worst in country, with that I actually got applauded by waiting patience and she was the 1 who ran off crying, no I shouldn’t be proud that I ruined her day ( it was 9:20am) but for 9yrs that surgery has ruined my life with misdiagnosis, lies and doctor who molested his female patients ( no I wasn’t molested at 43 I m way to old for the horrible thing that was charged and put in prison) so now now no decent doctors want to work there.

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I am literally speechless Mike - and that’s a rarity?!! 😱🤬🤷🏼‍♀️😎

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Did you get the results?

If not it might be worthwhile trying the consultant's secretary.

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Gheesh! Really shocking actually!

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I gave up verbally asking for anything from my GP (rheumy nurse is OK).

I wrote to the Practice Manager asking to receive all results of any tests....I even offered to pay postage to emphasise I meant it. I did this after a similar conversation to yours which was denied having occurred when I queried why I couldn't have the results.

I wonder why some nurses/receptionists think they can know all about my health but I can't?

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Yes, I have said this several times. One particular problem is that my GP regularly says he cannot access the database they use to record hospital tests so he is dependent on getting letters from the consultants who order them. I have even found myself on one occasion personally carrying a report from the consultants secretary's office in the hospital to the GP surgery to make sure it was received promptly. Like you say, it's extraordinary that some health professionals still feel that my information belongs to them and that I have to pass some sort of test in order to be allowed to see it x

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Yes I think we have to be a lot more proactive these days. I find my GP is loathe to make a diagnosis & then gets sniffy when I pay to see a doctor who will!

Mind you the last time she did prescribe it was the wrong drug & the wrong dose!

It's a bore but writing to the Practice Manager & putting cc to any body, she answers in case the cc is important! ( I don't actually cc to anyone - but it gets results)

I'm getting older & wiser after nearly 20 yrs of RA!

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Sometimes in person we can get our point across. Other than that. I would have shown up at her home and said, 'Doctor visit.'

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:)

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"Thanks for your concern. Please send me the report."

"Thanks for your concern. Please send me the report."

"Thanks for your concern. Please send me the report."

"Thanks for your concern. Please send me the report."

"Should I have my attorney contact you or the doctor to get my reports?"

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How unhelpful, condescending and patronising! 'Dr knows best'! - sounds like a quote from an aged 'Carry On' film - outdated and obsolete. Welcome to the 21st Century where patients are encouraged to be actively involved in taking control over their healthcare. I wonder when the nurse last read the most recent Statutory Guidance?

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Exactly x

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I do appreciate however we still have some way to go before many adopt this attitude - hence our frustration in reaching an answer to our debilitating and bewildering symptoms!

Hoping you are a little calmer today? Not great for the BP is it?

Sue.x

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Exactly. I was a health care prof/nurse for most of my career. I have always been careful to be respectful and understanding with my nurses and doctors, as I know how hard a job it can be. But the experience of being a patient over the last few years has made me steadily more oppositional and resistant. I've had some outstanding clinicians, but too many who I have learnt simply cannot be trusted. x

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‘They made me this way’

Very good point. I think a lot of our behaviour as a patient is forever changed by these experiences

X

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I have no printable words. I understand hospital and GP IT systems not talking to each other, but I cannot understand a nurse without a modicum of understanding that they are there for the patient nor that level of arrogance towards a patient.

PALs old chap, and don't beat yourself up. "Doctor knows best" would have make me flip, especially when she thought she knew best.

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How exceptionally frustrating but sadly all too common. It would be lovely to think ‘dr knows best’ but those of with chronic diseases have unfortunately experienced occasions when that is not true - or even when it is, if the doctor hasn’t received all the results and hasn’t discussed them with their very knowledgeable patients, interpretation is limited.

I’ve asked for my blood results multiple times and my consultant just smiles and nods then doesn’t ever send them. He is great but makes me feel I’m not trusting him because I ask to see them but another hospital repeatedly ‘lost’ some key results so I like to see everything these days. I’ve started to email the hospital now with these sort of requests as at least then there’s evidence of requests and less easy to refuse than verbally. I got my results all emailed through within the day but still haven’t managed to get a routine going where they automatically send my results 🙄

Have you obtained them now??

X

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I'm having to play a game. I will go via the GP - however, I have to choose a time when my star GP is on duty (that's tomorrow), to be sure of getting a straight answer. As if I haven't enough to contend with :(

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It’s not fair when you’re so poorly 🙁

X

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I’ve recently started collecting my results. It can be a fight. Don’t give up - you, as the patient, are entitled to copies. I work in healthcare and we would never deny a patient access to their results. I’d file a complaint against that nurse with her supervisor. Some doctors can not access all results and with multiple physicians, it’s helpful for the patient to be involved in their own care. You’re in the right.And no, doctors don’t always know best. I went to Emerg and have a new GP and both were exasperated by how my old GP was (not) managing my health. Trust your gut!

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I want to add - if that happens again, don’t offer an explanation as to why you want them. She was being a bully and redirected the conversation which just put you on the defence. Just repeat that you’d like your results. Hope it doesn’t happen again!

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Good grief what a bloody cheek!!! Who does she think she is? I admire you for your restraint as I would've lost it. Hope you manage to get them soon. X

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When I meet with the doctor I always get a copy of the blood work to keep for my records to share with other doctors that it may be relevant for in the visits meeting with that correlate to lupus symptoms. It's so important we keep a notebook of everything.

In the US, we have access to our records with most medical agencies as soon as they take blood work, or messages from doctors about our case and of course billing info listed by accessing their online site that is password protected just like with the bank, as we access our private info online with password protected sites.

Check to see if your medical agency has this type of program that you can access online to view your blood results anytime.

Yet we also have the same problem of some nurses and some doctors that just don't want to work with patients.

At that point, I change doctors. Obviously they don't want my business or need my business and I don't want to help them by giving them my money.

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