Soapbox and Superheroes: Living at the centre of our medical info’ web

Hello alI, yep I’m still here, but the daily health blogging challenge for this November slipped backwards a day or two earlier than I’d hoped. I’ve got some hospital tests coming up, and the reduction of meds, required for the tests, is testing me already!

I’ve been trying to access my medical notes from three different hospitals to take with me to this latest appointment. It strikes me that this is an awful lot to have to do as the patient, especially when struggling so much day-to-day already.

As patients with ridiculously complex conditions it falls to us to be the proactive instigators of forward movement in our healthcare. As I’ve said in previous posts, primary doctors and even secondary level specialists just don’t have the understanding to provide appropriate treatment for the broad range of multiple specialist areas that our health wonkiness covers.

This is not a fault of theirs, of course. It is understandable that such specialist conditions are not known by primary doctors who are required to have a large amount of general knowledge. But it is hard for them to know who on earth to refer us to when they don’t understand what’s going on within our bodies any more than we initially do. Our symptoms present a confusing and often paradoxical array of ‘what the…?’

Specialists, at the secondary level of care, are the ones we get referred to after initial basic tests have been performed (blood tests, basic ECGs etc that can be conducted within the doctor’s own surgery). We are often referred rather randomly depending on what our doctor thinks is worth looking into as a result of how our symptoms present to them. But referrals often don’t help much either as, for example, a cardiologist won’t have enough neurological knowledge to be aware of the neuro’ treatment options which can enable us to avoid unecessary and, in the case of CRPS patients, potentially long-term health-worsening effects of surgery in such treatments as fitting a pacemaker. (I previously wrote about the pacemaker suggestion I received and I knew it was not a first option choice, but the cardio’ just didn’t know what else to do).

Tertiary level specialists are reeaally specialist. They’re the ones we could do with getting to see. The trouble is that our doctors and other specialists don’t necessarily have enough data to work out which area of specialism we need to be assessed within, because the data they need is multidisciplinary by the nature of our complex conditions. And a specialist in one discipline is not going to have info’ from one or more other disciplines to have that all important ‘Eureka’ moment that we need.

So, who does this job fall to?

The patients.

But we are not medically trained. So what happens?

We spend months, and often years, getting bounced around like a pinball in a medical game of chance, timing and whether we’ve got the right angle on the symptoms. And yet somehow we always end up rolling back down into nowhere so that we have to kickstart the process again and again ourselves. Right back to square one… sat in the doctor’s office explaining symptoms which have got to the stage of being truly beyond unbearable otherwise we wouldn’t be there (because unbearable symptoms is something that is just everyday life for us nowadays). And we tend to sound so calm and collected most of the time simply because we have learnt how to present as ‘normal’ a front as possible through intense pain that used to have us screaming out loud, through symptoms so bad that we should be falling over or unable to make any coherent sense at all. Yes, the years of sensitising us to all the little oddities in our bodies and brains means that we spot the symptom slide early and immediately put into play some sort of mechanism that allows us to soldier onwards, and we don’t even consciously always realise that we are doing so because it’s become an ingrained habit: how to look and sound as if we are functioning normally when in actual fact we’re not really here any more! This is helpful to prevent from doctors going down the ‘hysterical patient’ assumption, and yet incredibly unhelpful in that we are describing intense distress whilst looking really calm!

So…. after years of square one, we get into the habit of explaining our condition to the doctors. Some balk at patient knowledge and assume there’s some kind of paranoid or hypochondraical moment going on! (sigh) Others realise they’re out of their depth but don’t know what on earth to do next and thus display their rabbit-in-the-headlights look, and sometimes they honestly say “I just don’t know what to do.” But as the years wend on we learn that presentation is the key. How we present both ourselves and the data to doctors often affects the outcome.

So… in we go… here are the facts, this is what I was diagnosed with (copy of letter to back it up), which obviously relates to having a faulty ANS (copy of research paper(s) to back that up, doctors like data, remember), here is my list of symptoms (one or two A4 sheets of not-too-small fonted type in simplified, easy-to-read form, under headings if we think it will make it simpler), these are the two or three most horrific symptoms right now that I need to have addressed (reduces the overwhelming amount of info’ to a few things they can focus on constructively), we reassure them that we would never do anything silly like try and diagnose ourselves (they relax a bit and continue to listen and weigh up the info’), but given that we know that my body has this wrong with it, and that this relates to that, and that these symptoms relate to this, it seems entirely possible that the new symptoms could be related to this as well, of course we are not medically trained, but the obvious links between this and that would suggest that it would be very sensible to see someone trained specifically in both this and that, so I’m not saying I’ve definitely got the answer or anything, but it just seemed to make sense to me, so I did some research just in case and I found that there is a specialist here and here that could be helpful (backed up with the relevant experience and current medical post info’ of the tertiary specialists, of course)…. (allow their brain time to see the totally pure sensible logic in this, there’s no creative-scaredy-patient traces in what we’ve said at all, just the facts, presented in the most digestible form), anyway, I’m not medically trained which is why I’ve come to you Mr-doctor, because I really need to do something about this, I really need your help. What do you think, Mr-doctor?

And Mr-doctor breathes a sigh of relief, because it really does make perfect sense, it does all link in, and there’s no way he would have seen the connections without the patient’s expert input. Mr-doctor says “I think that is a really good idea!”

(More info’ on what I took to my doctors appointment here).

But though we can see how this is the way things are, what does this mean? Aaaall patients with comparatively rare/unknown/complex conditions have to become their own experts to self-direct their own treatment options?

Yes. It does. It’s not ideal. You could even argue that it’s not right. But talk about problematic to ‘fix’.

We have to educate ourselves so that we can explain our own conditions to doctors. It might sound a bit weird to most people, but to those of us living with a complex multi-disciplinary condition it is simply the way it is. The way it has to be. Or we don’t get treated. Or worse, we don’t get treated appropriately which can cause more health problems than it solves if the knowledge isn’t there.

In addition to this basic truth, as pants as it is, (and it is pants), there are issues which I am experiencing now. I saw a respiratory consultant and specialist respiratory nurse at one hospital, I saw a specialist respiratory physio’ at another hospital and had a tilt table test in a another department that was nothing to do with the respiratory stuff (admin’-wise anyway), I’ve had numerous ECGs at another hospital, and goodness knows how many notes are floating around however many hospitals in the South of England about me. The problem is that that’s where the notes are and that’s where they stay.

You’d think that my doctor would get copies, or at least some sort of informative summation. But no. The poor chap gets bugger all. Sometimes he might get a letter with a couple of not-very-informative lines in it. How is he supposed to direct healthcare for his complicated-health patients when no-one tells him the specifics of what’s happened at the referrals he’s sent them to?

So yes, when we’re in a situation like I am now… hospital tests over two days coming up… the long journey to and from a specialist hospital will cause major health issues (even with Magic Dude driving and looking after me)…. I’m nowhere near ‘fixed’ when I’m on my meds, and for the tests I’ve been asked to come off the meds…. medless me means brainlessness beyond belief, moments of brain where I can do something like write this if I concentrate hard enough, if I’ve rested long enough, if I’ve managed to eat and drink enough fluids, if…, if…, if….., ….. (I’ve done pretty much no thinking or doing for the entire day, It’s now 6.30pm and I’m just about managing to write this)… the tests will cause flares in my dys‘ symptoms and in my CRPS pain levels, I have to brace myself for the recuperation period afterwards…. and yet…. I also have to phone round different hospitals asking how I get copies of my notes, then go round in circles as people try to figure out who I need to ask, then every hospital has a different way of working (one got the specialist to give them the info’ and just posted it out to me, one emailed me a form I have to post, another gave me contact details where I can send a letter, the latter two may cost me money but no-one can tell me how much until they see how many notes we’re talking about). I’m struggling to stand upright to get myself food, and I’m struggling to think words into sentences, but I have to do all this extra work because if I don’t the specialist won’t have any extra information because no-one ever sends notes to primary doctors to keep them all in one place.

This is my soapbox moment. But there’s nothing much we can do about it. Yes it’s reeeeaaally hard going. But if I don’t do this the notes won’t be with the tertiary level specialist, and then he’ll have less data to work with. Doctors neeeed data, that’s what they do for a living. So it’s my job to gather it all together in one place, because if I don’t the data just won’t be included, and it’s my job to explain my health to doctors.

Of the three hospitals only one could get the info’ to me quick enough, and they didn’t charge me for it either. So my huge thanks to the admin’ lady at the local cardiology department who sent me my ECG and tilt table test results. They are the ones I most wanted to receive in time for this appointment.

From now on, I shall always ask for my notes as a matter of course. I shall add them to my copies of all sorts of medical stuff at home. I am the data-holder, I am at the centre of the web of contacts and information. I feel that my doctor should also have this honour, but as he does not I shall share the data with him. After all, he and I are best working as a team. He as the medical professional and I as the expert patient. I think that’s a blummin’ good team!

It’s just hard on the patient when they’ve got a complex condition to try to live with every moment of every day already, to then have the added responsibility of Health Programme Manager and Adminstrative Manager as well as Don’t-know-how-you-do-it Super-Hero of the Chronic Conditions League of SuperheroesTM!

Soapbox moment over, this is just the way it is. We have to allow ourselves some downtime, but for the most part we wear capes because we darn well have to!

All day, every day, 24/7, relentless, non-stop, complicated, unpredictable and distressing health issues automatically means getting awarded a cape, right? 😉

Love and best wishes to all of my fellow superheroes, don’t forget that even superheroes have to take their capes off to put them in the wash from time to time, our Clark Kent moments are all part of it. It makes us no less phenomenal, we each would be less of a Superhero if we were not human as well, x


7 thoughts on “Soapbox and Superheroes: Living at the centre of our medical info’ web

  1. I loved the paragraph about presenting information to the doctor and making sure they don’t think you are trying to tell them what to do. It was like reading my own thoughts!! That method really does work.

    • It really does, doesn’t it! It’s not about pulling the wool over the doctor’s eyes, it’s about making sure the wool stays out of them! Clear info’, clear presentation, in the hope of clear thinking 😉 Great to hear that you employ the skills, too! x

  2. It’s called “making them think it’s their own idea”… 😉 The passivity of it is maaaaadening to me, as I’d much prefer to be direct and collegial. But they rarely can see patients as fully human, and can never see them as real, equal partners. As you say, that’s the way it is.

    It does help hugely to step back and look at the facts as if from the outside. And dear gods what you say about describing catastrophic states in a perfectly poised manner is so bitterly true. They won’t believe you’re really that badly off if you let it actually show…

    I want a foundation of $4,000,000/year to provide advanced degrees in science, medicine and public policy to people with CRPS. This b.s. won’t change until we get our hands on the tiller. /sigh/ Dreaming is free 🙂

    One of the things the US system does right is, it’s absolutely normal — and totally free to the patient — for doctors and exam facilities to send each other records. Happens all the time. That’s what the fax machine is for! They need a consent for release of records from you, a simple 1-page form that you sign, and you can set that up ahead of time. (That means they can’t just send them willy-nilly.) It shouldn’t take more than a phone call.

    The fact that the primaries’ office isn’t automatically given the results of a test or consult he or she ordered is absurd, and the fact that it’s not available to them on request is beyond the pale.

    Horrifying indeed.

    • It is indeed totally bizarre, they’ll happily send a two line letter, but don’t pop the informative results into the same envelope! I have found that once I’ve asked for notes they tend to arrive on my doorstep with the note that they’ve also been sent to my doctor. So if I ask, then he gets a copy! (Can’t have the patient knowing more than the doctor 😉 )

  3. Wonderful article as usual! Certainly gibes with my experience… except for those practitioners who are already closed to receiving information because of a particular prejudice of some kind. I love the concept that to be heard when you are presenting information on a neurological/immunological/crippling multi-system pain condition that truly few of them would survive without loosing a marble or two (or maybe the whole danged bag) we must be clear, cognizant, and organized as a Queen’s council heading into a major trial. Ah well, herein lies the need for capes… I’m with you all the way, Super Elle!

  4. Pingback: Recent (personal) disabilityish articles (NHBPM 24) | a Path Through the Valley

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