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What Happened When I Requested My Medical History

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In the U.K. we have the National Health Service and if you move to a new area, your clinical history will be transferred to the new general practitioner (GP) practice when you register. There are pros and cons to this system. The pros of course are that the medical records can be viewed across different NHS departments and should provide some continuity of care. The cons are that you can go your whole life without actually knowing what has been written about you, and doctors will only tell you what they think you need to know.

I needed to request some specific information from my GP for my disability claim so I decided I would ask for my full medical history. I had always wondered how doctors portrayed me in their notes, if at all, compared to how they treated me in the consultation room. Plus I am struggling still to get to the bottom of my chronic illness, so to be able to look at the full picture would give me a better idea of where I needed to go next. The thing is, medical self-advocacy is not encouraged by many in the medical professions.

To request my medical records I had to fill out a form and take it to the doctor’s reception with proof of my identity. I was asked by the secretary why I wanted the full history, which I was braced for after having done my internet research (and knew this was a common question, but not one I was legally obliged to answer). I answered politely that it was for “personal reasons.” The woman unfortunately became incensed with my answer, and explained that if I needed it for something specific or a particular time period to support claims that that would be much easier to do. Printing out documents was obviously not her favorite task and I believe she was trying her best to bully me into conceding. I smiled, nodded and repeated I would like the full history, as far as I understood this was my right. “Well of course it is!” she retorted and then proceeded to tell me they had over 3,000 patients, and if she were to print out every single medical history it would be chaos. I continued to smile and nod, and told her I understood but I would still like what I requested. She ended up throwing my identifying documents at me with a resounding “fine” and stormed off (leaving the receptionist and I’s  jaws agape).

It took two months for my medical records to be released, and from the print signature at the bottom of the page it was printed two weeks before I was instructed to pick them up…bare in mind the standard is one month. I did ask after the first month if there was any news, but all I got was that if the secretary had not contacted me yet, then it was not ready. I suffer from anxiety and PTSD which makes confrontation very difficult for me, if I were more emotionally
robust I may have pushed the subject a bit and even asked to speak directly to the secretary. But quite honestly, I was scared of her after our last interaction, my heart rate was racing just asking at reception incase she was there, so I left it in their hands.

Now on to the medical records themselves. The thing that shocked
me the most was the disparity in what I was being told, what was being discussed and what was or was not being written down. As I read through my notes, I really questioned my own sanity and whether I had correctly perceived the conversations I had had with doctors in the past. Is this some sort of institutionalized gas lighting? Or are doctors just not recording their sessions accurately? The way that they are stretched I can imagine notes aren’t typed up at time of consultation, and done roughly on what they have scribbled down at the end of the day. I saw this a lot at a vet practice I used to work at, so can only imagine it is similar in a human medicine setting.

Another thing I noted was from a phone call I made to NHS 24, this is a helpline for people who are concerned but not sure if a visit to doctor or the emergency room is necessary. In the notes there was a section that stated, “known allergies – penicillin, MMR vaccine, patient denies.” I remember this phone call as it wasn’t that long ago. It was after midnight and I was in an abnormal amount of pain and couldn’t roll over in bed, never mind walk. The phone handler asked me if I had any allergies, to which I said “no” because to my knowledge I did not have any. The phone handler then scoffed and told me that on my record it says I did. I think I responded with, “Oh, OK then.” I was out of my mind in pain so I didn’t think to question it. At no point did I “deny” the fact I have an allergy; I genuinely didn’t know. This particular phone operator also grilled me about why I had gone to work that day if I was in so much pain (yay for living on the bread line), so I feel she may have been biased in her assumptions of my honesty. After reading my notes I found that I had “allergic type reactions” to both of the above when I was very young, but no clinical conclusions were made. So no, I do not have any allergies.

Next is what all of us with chronic illnesses dread to read about — doctors imparting their personal (and not medical) opinion on our notes. One example was not surprising; I had gone to a consultation to talk about my pain meds. This doctor was completely unsympathetic, uninterested and sent me away with a referral to an online CBT course instead of the requested medication plan. In his notes, alongside stating that I was basically drug-seeking, he stated twice that I did not show any signs and therefore he doubted very much that I was on the autistic spectrum. Apart from the fact that CBT is not always successful for those on the spectrum and therefore I had wondered why he had referred me for it, my autism diagnosis was not on the table for discussion with this doctor. This doctor that had spent less than 10 minutes with me. This general practitioner who was not an autism specialist! I was not surprised at his bad attitude as he made this abundantly clear to my face, but it still shocked me he felt so passionately that I was not autistic to state it twice in a very short note. It seemed a very weird thing to fixate on.

Another instance that was shocking to me was the doctor that
had always been sympathetic and respectful of me but told a very different story in my notes. She had stated that I had “obviously been on Google” when I requested further referrals for my pain. Her disdain of a patient taking some control was evident.

The most common denominator in my notes that frustrated me
was when I just wasn’t told something. I was only ever told what they deemed was necessary. For a service that continually falls short when providing holistic treatment, I would much prefer to be told too much than too little.

I have learned from this experience that medical professionals are not infallible; they are human beings who let their own egos
get in the way of their practice, they are not always on their best day and they are not always right. I am unsure how to go on from here though, how do I ensure that what is being said to me is what is being put in my records? And how do I ensure that I am getting the full picture? This is something I still need to figure out, but at least I know what questions I now need to be asking.

Photo credit: monkeybusinessimages/Getty Images

Originally published: February 19, 2020
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