Patient care taking a backseat to the business of health

I don’t think very much of doctors, or any “brand” of health professional really – except for the nurses that tend to do most of the heavy lifting.

I haven’t come to this opinion lightly or quickly. For more than a decade I registered international health practitioners coming to work in Queensland, sat on committees with doctors as they assessed and adjudicated on their peers, and taught English to all types of health professionals so that they could fulfil their specific licensing requirements.

Of course, in addition to my time spent with doctors in a professional capacity, there are my countless experiences as a patient, dating all the way back to when I was a small child with a heart murmur and undiagnosed Autism in the early 70s.

My many thousands of hours of interactions with doctors (and other health professionals like OTs and dentists and pharmacists), have, unfortunately, left me with a variety of rather unsavoury ‘takeaways’.

I’ve already documented my disdain for one particular sleep specialist that practices in a prominent private hospital here in Brisbane. But I also fell victim to a dentist – one that left the lower left side of my face numb. And these days, as some of the sensation returns to the area around my jaw, it has become decidedly tingly.

That I have far too often put my trust in these supposedly highly trained professionals, and been reluctant to speak up, always wanting to be a “good” patient, when in fact it would have been far better for me to demand more from my physician, hasn’t helped.

Far too many health professionals benefit from their patients’ deference. No one has ever been shy in telling me they didn’t like something I wrote (a practice far more painstaking, skill oriented, and personally effacing than what a specialist doctor does in the 20 minutes they spend consulting with me, I can assure you), even if I did it for next to no financial benefit.

But a doctor can charge more than $500 each visit for the privilege of hearing you speak, tell you they have no idea what’s wrong with you, advise you to take this or to rub that on it to “see what happens”, and we (usually without question) pay a small fortune and return six weeks later, to them or to their carbon copy, begging for more of the same please – as if somehow just being in proximity to a specialist physician might somehow make everything better.

Most health professionals, in my opinion, aren’t worth as much to us as the people we give no thought to and take for granted as they clean the offices we work in and cart away our weekly offerings of refuse from the front of our houses.

I shouldn’t therefore have been as surprised as I was at the lack of decisiveness and general ‘hedging’ by the psychiatrist I saw when my wife first suspected I might be Autistic.

$500 was the price I paid for that initial face-to-face consultation where he asked me a lot of questions but told me nothing.

I believe you have “Autistic traits” but I’m not sure that I can say that you’re Autistic. Please make a follow up appointment with my reception staff on your way out the door. (I swear I saw him rubbing his hands together in glee as I left!)

This same psychiatrist now charges $850 for an initial 45-minute online consultation (he’s done away with seeing patients in person, reducing his overheads), while subsequent visits cost a breezy $650.

White text on a green background with The Unmasked Autistic logo in the lower centre
This scene, from the sitcom ‘Seinfeld’, is classic George. But what does it say about me that I think he’s right?

There are those who would have you believe that medical degrees are expensive and doctors have bills to pay, too, so it’s understandable, these large fees. But is it really?

This guy’s in his late 40s, in a practice all of his own, his degree is well and truly paid for. What saps like me do (I did see him one more time) is foot the bill for his expensive tastes.

I don’t know about you, but for those kinds of prices I want a doctor who can at least deliver on something approaching a fully-fledged diagnosis – not a bunch of circumspect meandering, followed by referral to someone else who’ll do his dirty work.

The Australian Government’s ‘Medical Costs Finder’ states that for an out of hospital psychiatry visit, you should expect to pay the ‘specialist’ fee of $165 and be out of pocket $51 after receiving a rebate. But at the rates the psychiatrist I saw now charges, you stand to part with almost $500 a pop.

This esteemed fellow also works with ADHD patients and charges $300 (out of pocket $221.15) for 15 minutes for the privilege of reviewing your medication. Then, you as the patient, get to part with even more hard earned when you go to pick up your tablets from the pharmacy.

This type of price gauging and fixing (it seems, from what I can gather, that all psychiatrists charge these outrageous amounts) is common across the ‘specialists’ board’.

The problem I have with all this is that it makes healthcare for the most vulnerable and for the most in need unattainable.

I had to stop work last year because I was so unwell with Autistic burnout, and when the psychiatrist in question raised his fees by more than 50 per cent in the weeks leading up to Christmas, my wife and I were paying thousands of dollars in medical bills.

Unless they are in very lucrative employment, I do wonder how the young family, taking those first steps towards discovering whether or not their child (or children!) is Autistic, does it. No wonder some parents have little, or nothing at all, left for themselves.

And when all specialist health professionals are charging fees above what’s recommended by the government, above what’s reasonable, I do wonder why we even view it as “healthcare” at all.

The “care” is, in the examples I’ve cited, for the most part, over. How can it not be when the driving influence is the almighty dollar? For this exchange now is business pure and simple – it just happens to be in the area of health.

There are of course more than a few good apples amongst what I consider to be a decidedly rotten bunch.

My own GP, for example, is fantastic (although I had to discard three other quacks over an 18 months period to find her); since long before I (or my wife 😉) even suspected that I was Autistic, and since my diagnosis, she has been nothing but supportive, interested, and professional throughout.

What’s more, she still ‘bulk bills’ the majority of her patients, which means that when you see her, you’re not out of pocket even a single cent.

For the most part, however, my experience has been that it’s a crap shoot when negotiating the medical fraternity, and even worse, I now realise, when you’re Autistic.

It doesn’t matter if you’re seeking advice, looking to work with a counsellor of some type, or engaging with a health professional on a matter unrelated to your Autism – most know little, if anything (or anything current or correct), about the condition itself.

That’s why, if you’re Autistic and it’s possible to, you need to make sure you work with neurodivergent-trained and neurodiversity-affirming specialists. Or, better still, a health professional who themselves is neurodivergent. At least then they’ll have some idea of what you’re going through, and be able to discern fact from fiction when it comes to your own Autistic experience, and health.

These days there are so many more conditions whose mere existence we can attribute to Autism (and I’ll be writing about some soon!) and which research now tells us present differently in the Autistic patient. Yet most of the so-called experts we put our trust in don’t have a clue about them, and worse, will dismiss them out of hand if you deign to raise them and question the learned doctor’s “authority”.

It’s this kind of ‘gaslighting’ that maintains the bulging superiority of many an inept health professional and dismisses completely the patient’s perspective – the person living through the experience – the pain or discomfort or anguish – in the first place.

As I’ve already stated, I don’t doubt for a second that there are many thousands of eminently qualified, highly capable practitioners doing the rounds amongst all of the dross. The sad part is, they’re so hard to find.

But I will not give another cent to the types of “professionals” who put themselves and their bank balances ahead of their patients, who truly believe that they’re superior – and I would urge you to consider doing the same.

It’s our life, it’s our health, and they’re both far too important to allow these business people in health practitioners clothing to compromise either one of them.

This story forms part of a series of blog posts written to coincide with the first year anniversary of my Autism diagnosis, each highlighting a key ‘takeaway’ from that first 12 months. I hope you enjoy reading them.

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