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I emailed My Doctor 133 Times.. PhilosophyTube

Discussion in 'Other health news and research' started by BrightCandle, Nov 13, 2022.

  1. BrightCandle

    BrightCandle Senior Member (Voting Rights)

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    338
    I watch Philosophy tube and the trans lady who makes the channel recently put out a video about how difficult it is to get gender reassignment in the UK. It goes over GP refusals to treat and long waiting times and lack of provision of care. Its very relatable as an ME/CFS patient were we have a stigma associated with our medical condition as well.

    Its titled - I Emailed My Doctor 133 Times The Crisis in the British Healthcare System.

    https://www.youtube.com/watch?v=v1eWIshUzr8


     
    TiredSam, Sarah94, rainy and 6 others like this.
  2. RedFox

    RedFox Senior Member (Voting Rights)

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    1,244
    Location:
    Pennsylvania
    Is this a joke?
    I live in America and there are six clinics within an hour of me where people can get HRT with informed consent. I wouldn't even need to see a mental health professional, just agree to it like any other medication.
     
  3. BrightCandle

    BrightCandle Senior Member (Voting Rights)

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    338
    No its not a joke unfortunately its a very real portrayal of the NHS. When we talk about systemic prejudice in the NHS this is one part of it. One thing this video has made me realise is that the ME/CFS clinics are a containment strategy, the entire point of them is to keep us as patients away from any real medical care. The system has been designed intentionally based on prejudice to exclude certain people from getting care by making the same treatment substantially harder to get for undesirables.

    For all the British often claim "least bigoted in the western world" it hardly rings true when time and again when reports are done its clear the British have institutionally designed its state to be bigoted. This video is an education that everyone in the UK and especially ME/CFS patients need, it explains the problem. We do need to consider court action its probably the only route forward.
     
    Last edited: Nov 13, 2022
    Michelle, EzzieD, Sarah94 and 12 others like this.
  4. hellytheelephant

    hellytheelephant Senior Member (Voting Rights)

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    908
    Unsurprising to anyone living in UK.

    Was trying to explain something to GP last week when it flashed through my mind that I would be taken a lot more seriously if I was a man displaying the same problems.

    Does anyone email their Gp in the UK? ! Ours does not engage with patients like that- it' s econsult or appointment only.
     
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  5. RedFox

    RedFox Senior Member (Voting Rights)

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    1,244
    Location:
    Pennsylvania
    Sorry, I said this is an expression of shock. Unfortunately, this is all very true.

    I jotted down a few thoughts while watching the video from start to finish. I've seen many discussions of informed consent healthcare for trans people, but she present this issue in an erudite manner and from a refreshing perspective. The entire plot of her personal experiences was utterly infuriating, and reminds me of my attempts to get a CPET and an ME specialist.

    Her direct and honest description of how institutions really work blew my mind that other people actually think this way. As an autistic person, I understand things directly and factually like this. Multiple times on the phone with medical people, I've flat out told them that doctors in their own clinics treated me with ableism and pseudoscience and the fact that multiple doctors did this proves it's systemic.

    In chapters 6 and 9, she describes how doctors and experts coalesced around bad science in a way that all pwME are intimately familiar with.

    I watched this entire video because I knew it would give me more motivation and intellectual tools to advocate for myself, and while I was deeply distraught at the way the NHS treated her, as I've experienced similar problems getting ME healthcare, it was a valuable learning experience.
     
    EzzieD, Sarah94, rainy and 8 others like this.
  6. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    6,048
    Location:
    UK
    I haven't emailed my GP even though I'd like to be able to. My surgery doesn't list multiple email addresses on their website, there is only one for the entire surgery. If you were to email the surgery you would have absolutely no idea who was reading it. It's stupid and about 25 years behind the times.

    However, I have written an ordinary letter to my doctor on quite a few occasions, particularly when I can't face seeing a doctor (which is almost always).

    I am intimidated by doctors because it has been made clear to me on many occasions that they don't believe a word I'm saying, rarely have any intention of helping me, and I've been insulted and laughed at many times. Even though I have provided proof of what I'm saying (from my actual GP records!) it never changes anything. So with letter writing I avoid them, still have time to marshal my arguments, but still have no idea who is reading what I wrote.

    Rather than actually put a letter in the postbox for Royal Mail to deal with I take it to the surgery by hand. I also write on both letter and envelope that it has been "Delivered By Hand". They can't say it was never received if I hand it over in a sealed envelope to one of the receptionists.

    Edit : I forgot to say... If I emailed my surgery 133 times about anything at all I would be thrown off their register of patients. They would probably also blacklist me and make it virtually impossible to get primary care on the NHS.
     
    Last edited: Nov 13, 2022
  7. Shadrach Loom

    Shadrach Loom Senior Member (Voting Rights)

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    1,052
    Location:
    London, UK
    Yes, I email mine with blood pressure readings from time to time, and summarise the latest stuff from hospital consultant’s letters so that they are properly briefed before I request prescriptions from primary care. I don’t think the copies that go to the surgery even get read.
     
  8. Kitty

    Kitty Senior Member (Voting Rights)

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    Ours too. There isn't a single email address provided anywhere on the practice site.

    The idiotic thing is that even if you write in capital letters when you send in data via the web platform that you're only providing information (e.g. blood pressure readings) that the GP requested during a previous consultation, and you need neither a response nor an appointment ... you still get a phone call.

    And if you couldn't take the call because you were on a nature reserve with no mobile signal at whatever random time they phoned (sometimes a couple of days later), you still get an irritated text saying we tried to reach you, and it's important that you're available to answer when called, and could you please contact us as soon as possible. At which point the whole cycle starts over, because unless you can hang around on hold for 45 minutes, you can't reach them by phone to tell them that you didn't need a call in the first place, so you have to use the web platform again.
     
  9. hellytheelephant

    hellytheelephant Senior Member (Voting Rights)

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    That' s interesting- maybe it depends on the Practise.
     
  10. JemPD

    JemPD Senior Member (Voting Rights)

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    Its a great video she's done there.

    What i find extraordinary is that they think that the doctor is the only person with a life, that the patient is never in the bath, on the toilet, resting - because you know, the patient is ill, in the supermarket, or any of the other 'otherwise engaged' things that people do. You are just supposed to be magically and instantly available, sitting for 12 hrs a day for 4 days, every moment sitting waiting for their call, as if they are God & therefore you must keep yourself ready & able to talk, just whenever the doctor finds it convenient to ring. At any point between 8am & 7pm on any day. The power dynamic in that is repugnant.

    I dont understand why any of the practice staff or doctors get huffy when you werent just able to answer & have a conversation with a doctor at literally 4 seconds notice. It is so, so indicative of how they think about patients, it says it all to me. They are so keen to avoid their own inconvenience it makes me puke.

    When i have told receptionists that i need to have a rough idea - say a 4hr window - of when they will ring because i spend most of my life too ill to talk on the phone & will need to pre-emptively rest up in order to be well enough for the conversation, it simply will not 'compute' it is inconceivable to them. And the msg is essentially, we dont give a sh1t about you or your needs, the doctor is all that matters.
     
    Wits_End, EzzieD, Sarah94 and 8 others like this.
  11. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    I like the way you put it about the government strategy re ME clinics: "a containment strategy", to keep our community "away from any real medical care".

    Containment, sort of like an oil spill. Toxic. Not wanting our "faulty beliefs" to spread.
     
    EzzieD, Sarah94, RedFox and 8 others like this.
  12. Kitty

    Kitty Senior Member (Voting Rights)

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    5,051
    Location:
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    I do – thankfully – get better info than that when I need to talk to one of the GPs. I think the vaguest appointment slot I've had was one where they couldn't say whether it'd be mid to late morning or early afternoon, but did let me know that if I hadn't heard by 12:00 noon, I wouldn't get a call until after 2:00 pm because the doctor had to call in to a case conference. That was useful because at least I got a break from being on alert all the time.

    Another frustration is that the info is passed on to me by text, and often the messages are composed individually rather than pushing out pro-forma content. Yet I can't send a brief reply, for instance to let them know I didn't actually request an appointment, I was only submitting data. Instead I have to queue on the phone for ages, because of course incoming calls use the same two or three lines as the GPs' phone consultations. As it happens I have a mobile plan that offers more call minutes than I'll ever need for my five quid a month, so it's a waste of time rather than money, but a lot of people in our deprived catchment area are on prepay.
     
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  13. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    3,601
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    UK
    It’s not a coincidence that the only non-disabled people who have instantly believed me about how the medical system mistreats ME patients… are all trans.

    Edit: ok not quite, I remembered one non-trans non-disabled person who immediately believed me.

    Also: I’ve never met a trans person who didn’t immediately believe me.
     
    Last edited: Nov 15, 2022
  14. rvallee

    rvallee Senior Member (Voting Rights)

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    12,299
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    It feels important to point out that by now the technology to do something like this, to give patients-in-waiting a countdown queue telling them how close they are to being their turn is now trivial.

    It would never be accurate to the minute but this kind of logistics has been nailed down to a science for many years. Basically all package transport uses those now, you get emails or SMS telling you how close delivery is. This is not hard at all. It was hard, but when you work at something it gets better and we have the benefit of billions invested on doing these things.

    But from what I can see, all healthcare is hyper-local and there is basically no coordination at higher levels, in some cases it's down to individual clinics. In the Canadian system, for example, most physicians are basically self-employed and bill the government. They manage their own thing, even though they aren't trained to do this, there is essentially almost no economies of scale or logistical support at a higher level.

    It would make no sense to build such a system in a everyone-for-themselves model, it would be a mess of incompatible technologies. This is the kind of thing that works when made into a standard. Given that all the key technologies are in place, it's just a matter of deciding which ones to use and implement at scale.

    So it's technologically easy to do this, but impossible because the problem is humans not working together. And because the main benefit would be seen as the patient's time, even though it would improve the flow of things for physicians as well, and that's never a priority because there is simply no incentive to do this. No incentive to improve things. No wonder so little progress occurs.
     
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  15. Shadrach Loom

    Shadrach Loom Senior Member (Voting Rights)

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    An added wrinkle is that everyone concerned is pretending hard that all appointments will revert back to face to face soon, meaning that clinicians will pick up on subtle signs of fatal lurgies. This hasn’t happened, of course, because online or phone is way more convenient for doctors and even for patients, despite the vagaries of scheduling.

    But it would still be bad form for NHS Digital to invest £12.50 in a when’s-my-call-then app, and £12.5m in rolling it out nationally, and £12.5bn on having the platform assured against any possible cyber and privacy concern.
     
    rainy, alktipping, Arnie Pye and 2 others like this.
  16. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    917
    I attended an online conference at the weekend and, interestingly, one of the doctors presenting produced this “GMC duties of a good doctor”.

    I thought it was good to keep in the arsenal, should a letter to a Practice Manager/complaints Dept was ever needed. I hope it is helpful.

    upload_2022-11-21_9-19-47.png upload_2022-11-21_9-19-47.png

    https://www.gmc-uk.org/ethical-guid...e/domain-1---knowledge-skills-and-performance
     
    EzzieD, rainy, Frankie and 2 others like this.
  17. BrightCandle

    BrightCandle Senior Member (Voting Rights)

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    Oh the irony from the GMC given how its been defending abuse by GPs about complaints around ME/CFS for decades. Its not about what they say its what they do, the GMC is part of the problem.
     
  18. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,299
    Location:
    Canada
    Wow this all sounds really good, I hope they try it one day.
     

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