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Audio recording your consultation with NHS doctors

Discussion in 'General ME/CFS Discussion' started by golden, Mar 10, 2013.

  1. nolegion

    nolegion

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    Many thanks to golden for the write-up of the thread I started a few years ago and still kindly hosted by CAG (a UK, very large, 'non-profit' website covering a wide range of "consumer" issues).

    I think it would be tremendously useful if the initial interest in the topic shown here was taken forward and developed with particular reference to non-UK legal issues (which I am not qualified to explain). It can be hard work, but I have found it immensely rewarding, and have 'met' (at least electronically) a large number of people with considerable insight, and sometimes fascinating – and shocking - stories to tell, on the way.

    Never leave without a link: here's one I will be posting in the UK thread shortly:-
    http://www.speaksooner.org/why-every-patient-should-be-recording-appointments/

    There is no good reason why those who earn a living by advising should object to their advice being recorded by those they advise.

    With best wishes,
    nolegion
    peggy-sue and golden like this.
  2. golden

    golden Senior Member

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    Hi Nolegion,

    If Id have thought about it - I wouldn't have just posted the thread reference but would have creditied your name too.. :)

    It was such an inspired, intelligent thread that is so relevant to M.E./C.F.S. community.
    As you may see.

    Thank you! :)
  3. golden

    golden Senior Member

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    I have only just seen this xks201,

    Thats so damaging. More so when younger I think.
    Its this sort of random mental health label that gets plucked out of thin air depending on the medics mood, thinking that scares me.
    n
    But physical testing isnt being done in lots of cases. And diet is rarely thought about.

    I have read a few accounts of the negative effects of dairy and remarkable health improvements.
    You were lucky in a way to find the true cause...
  4. golden

    golden Senior Member

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    I agree with the link.

    Personally though what is so difficult at a Doctors surgery ...

    is Everything !

    With a Neurological condition ,

    the travelling, the sitting at the surgery waiting , with nowhere to put feet up or lie down causing problems and POTS OI symptoms , the flourescent lights , probable chemical and sensory overload.

    One walks into the appointment after just battling through the jungle lol:)

    Then is the holding all the questions in my head whilst being rushed and interrupted by doctor.
    Taking a list of questions and symptoms is much better.

    In fact I have an idea !

    I will pre -record what I want to say to my G.P. -

    When I see him , I will just hit PLAY and watch as he tries to interrupt :)
    and insult it :)

    But at home or well rested to be honest I can take in difficult news or hard to hear diagnoses.

    I was reading a scientific study (NEnglJMed, 2012;367:1616-25) done by Researchers at the Dana-Farber Cancer Institute in Boston.

    To summarise the article in WDDTY, (August 2013 issue) , they discovered :

    "a major miscommunication issue between the oncologist and the patient when they interviewed 1,193 patients with metastatic lung or colorectal cancer....

    four out of five patients believed the chemotherapy would cure them even when they had discussed the trt with doc.
    Very few patients believed into the two more likely outcomes : that chemo might extend their lives or help with some of the symptoms ofthe cancer"

    My Mother did this too. She died of bladder cancer.

    That is a HUGE miscommunication. It could be as the article suggests.
    And if so , recordings should be standard and not 'radical'.

    :)
    peggy-sue likes this.
  5. xks201

    xks201 Senior Member

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    It's been a hell of a lot more complicated than just removing dairy.
  6. golden

    golden Senior Member

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    I bet it has.

    I vaguely recall alot of people chatting about the Cancer /dairy /china link ...
    And people who have successfully cured schizophrenia from a macrobiotic diet cutting out sugar etc.

    The thing is , finding what works for each of us, as individuals.
  7. nolegion

    nolegion

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    It has been kindly suggested to me that people might find more links on this subject helpful. Truly, I am spoilt for choice, but here's a selection from the past 18 months or so:-

    Summary from a Scottish medical defence union. Legally, it's nearly accurate:
    http://www.mddus.com/mddus/news-and-media/media-centre/may-2012/covert-recording-risks.aspx

    Ivy Robinson's case (warning, distressing):
    http://www.theguardian.com/society/video/2012/aug/29/ivy-robinson-abuse-oakfoss-video

    Dr Robinson's case. I don't think the complainant in this one earned many new friends, but it is important as a demonstration of the principle that the General Medical Council can and will strike doctors off the register on the basis of a covert audio-recording:
    http://www.dailymail.co.uk/news/article-2101313/Doctor-secretly-taped-enjoying-sex-sessions-female-patient-struck-off.html

    Beware of bears:
    http://www.mirror.co.uk/news/uk-news/christine-anne-mayor-mum-puts-2023206
    &
    http://www.cbc.ca/whitecoat/blog/2012/12/19/big-brother-is-watching-secret-recordings-of-mds/

    CBT…or common sense:
    http://www.babcp.com/cafe/index.php?topic=3207.0

    Common sense, oncology USA:
    http://blogs.webmd.com/cancer/2012/03/your-new-best-friend-an-audio-recorder.html
    Valentijn, ukxmrv and golden like this.
  8. overtrain

    overtrain Medical Mafia needs to die via this virus.

    I wouldn't think of going to a doctor's office without turning on the recorder right before I walk through the door. My "medical care" was so poor in Iowa City, U.S. that at my final appt. I referred to the fact I was recording our visit right in the middle of it, & pointed to my cell phone placed between us. I said I wanted it on record I came in with these symptoms on this date and asked for help. He got a whole lot nicer right away. Demeanor, tone, everything. But bottom line? No help. I even record any dealings with my landlord now. If someone isn't doing anything wrong, they should have no fear of exposure. Used to be a college teacher. Couldn't care less when students asked if they could record occasionally. Only those who act badly have fear. That tells you something in itself. Hello, transparency? Also, it totally changes the dynamic if you bring a witness. And if you're female? Studies have shown you'll get better care if you're accompanied by a male, not a female. For a while I recruited various male friends in my life to go to the ER with me. I got taken more seriously than when I went alone or with a female. Turn the tables on these doctors; they work for you, not you them. :D
    rosie26, peggy-sue, golden and 2 others like this.
  9. nolegion

    nolegion

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    Although there is some overlap between this link and previous ones posted here, it is well worth persevering with it in my opinion:-
    http://helphealthcare.wordpress.com/2012/12/11/too-expert-to-ask-why-we-distrust-medical-professionals/

    Above all there is the podcast link to a CBC discussion of patients who record (which as indicated starts at 18:28 - and finishes at 28:12).

    Like the blogger, I found myself increasing irritated with the alleged 'expert' who gets most of the air time. Sitting on the fence until it requires surgical removal helps nobody.

    I much prefer the relaxed pragmatism of the doctor first asked to comment:-

    "… because there is no way to stop it, I think hospitals will have to figure out a way to embrace it."

    When I first heard that, it reminded me of a commentator in England over 3 years ago. See 'Seth Fyl's' final remark in an annotation at the foot of an online article back in May 2010:-

    "At the risk of earning an MA in the bleedin’ obvious: if we don’t ‘embrace’ this aspect of ‘patient-power’ we will get “0££!!!17$ffRF*ed by it."
    ( http://editorsblog.gponline.com/2010/05/11/should-patients-post-consultations-on-youtube-facebook-and-twitter/#ixzz2cQLnBrig )
    Esther12 and golden like this.
  10. golden

    golden Senior Member

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    http://www.bmj.com/content/348/bmj.g2078

    Nice to see the stream of sanity flowing far and wide :)

    BMJ article 'patientgate' acknowledges Nolegions thread on The Consumer Action Group...

    :) Thanks again Nolegion!
    This was an important topic to me.
    Valentijn and Esther12 like this.
  11. Esther12

    Esther12 Senior Member

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    Nice to see. Thanks.
  12. nolegion

    nolegion

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    Hello again.

    That 'patientgate' article by Prof. Elwyn may disappear behind the BMJ's usual paywall shortly, so, just in case, here's a further route to it that doesn't involve tangling with the, now voluminous, thread I started a few years ago at CAG:-

    http://thehealthcareblog.com/blog/2014/03/13/patientgate-digital-recordings-change-everything/#comments

    Some weeks prior to that, in what is frankly a complete volte-face by the insurer concerned, the MDU went into print warning doctors not to try to 'ban' patients solely on the ground that a patient wants to take an audio-recording of a consultation home:-

    http://www.themdu.com/guidance-and-advice/latest-updates-and-advice/what-should-you-do-if-a-patient-wants-to-record-a-consultation

    This is, obviously, all very helpful indeed. But I think we should also bear in mind the fact that in the online poll the BMJ has just closed, nearly 40% of the vote was still against the right of patients to record at all(!).

    Damn the dinosaur doctors, and get recording, I say - perhaps with copies of the above articles in your pocket.

    Best of luck to all patients here, especially recording ones, of course; and if you have a 'recording story' – good or bad, 'overt' or 'covert' – please do put it online one way or another, so we can all learn from it.
    Last edited: Mar 18, 2014
    golden, Esther12 and peggy-sue like this.
  13. Esther12

    Esther12 Senior Member

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    Thanks nolegion.

    re the BMJ poll: currently in the UK doctors have a lot of power and little accountability, and it's not in their interest to change that - I expect that change will have to be pushed upon them.

    Before I fell ill, I had no idea how much a 1950s mentality continued to reign within medicine. It's has not been a pleasent surprise!
  14. nolegion

    nolegion

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    For anyone here still keeping an eye on this subject, there was a World Service 'Health Check' broadcast about it a few days ago, which you can access here:-
    http://www.bbc.co.uk/programmes/p020r2y5

    I now understand the topic is also likely to be covered in an edition of Radio 4's programme 'Inside Health' coming up next month: specifically, for diaries:-
    Tuesday 8th July at 9:00 pm - repeated at 3:30pm on Wednesday 9th July. (Or you will be able to listen again from here for a short while if you miss it:-
    http://www.bbc.co.uk/programmes/b019dl1b)

    Both the patient who used two recorders and Prof. Elwyn, who wrote the 'patientgate article', feature in the earlier broadcast, and may well do so in the next, I believe.

    Meanwhile, the Prof. has been conducting a major 3 day conference (Dartmouth Institute) in the USA - ended yesterday - about 'shared decision-making' ( = fundamental part of 'patient empowerment', in my book). He has indicated before that recording by patients would be on the agenda there.

    I am hoping the forthcoming UK broadcast on R4 will tell us a bit about how that conference went.

    Regards to all here.
    Esther12, golden and Sasha like this.
  15. Esther12

    Esther12 Senior Member

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    Thanks for posting the updates for us.

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