It wasn't easy getting to the end; Ignorance, passing patients from pillar to post, a complicated complaints proceedure? I went through it all.
No secrets here: I had my first brush with a remit and relapse disability in the mid 2010’s. The doctors came down solidly on Myalgic Encephalomylitis (ME) and sent me on my merry way to manage an unstable, incurable, then widely-disputed disease which, thankfully, took a hiatus after about 12 months. I even wrote about it then and it was published on an online publication that is, now, akin to The Daily Mail for University gossip and clout chasing. Not sure how proud I am about that these days. When the ME seemingly reared it’s head again in 2020, I considered myself a little more prepared! The brain-fog, the tremors, the fatigue, the relying on mobility aids again. Pah! This was going to be a dawdle! I was woefully unready for two things; the first that this “relapse” seemed to be a lot tougher than the first time around. And second, that this “relapse” was not actually a “relapse” and was something far more daunting because it was never going to end. In fact, it was going to get progressively worse and eventually take my life as I knew it.
She's just hysterical.
Doctors on the NHS were so frantic in proving that it was not the Multiple Sclerosis I was concerned about and that had plagued two generations of my family, that they arranged narrow spectrum tests, piggy-backed on MRI's from other unrelated departments, and didn't even complete their own full preliminary neurological exam in the first instance. In fact that neurologist decided it was anxiety thanks to my brief mention of my psychological history and a 3 minute exam which he spent most of picking his snack muffin from between his teeth. I made a formal complaint. But it was clear from the moment I turned up on the system, I was treated as a hysteric.
Finally, when a Greek Neurologist settled on an 'Upper Motor Neuron Disease (UMND) requiring further investigation', I brought it to the NHS's attention. A British consultant fired the diagnosis of Amyotrophic lateral sclerosis (ALS) diagnosis at me over the phone during lockdown, sending my entire life into a tail-spin only for them to back-track 3 months later. The first snack-focused neurologist tried to fix his previous mistake by doing a full follow-up exam recommending me for a series of tests in Britain to confirm the UMND diagnosis from Greece, specifically an EMG. When I arrived for those tests with a letter confirming the two I was supposed to have, the doctors performing the tests said that they had been authorised to do one, and it was NOT the EMG regardless of the letter in my hand. Thankfully my best friend was in the room for that exchange so I wasn't alone in how devastating and confusing that situation was. And to give me strength to at least do a test that would remove more cards from the NHS's hand.
When I finally saw an NHS Motor-neuron consultant, he determined that it was categorically NOT UMND at all but probably anxiety-induced Functional Neurological Disorder. When asked if he had read the information from the Greek Doctor, he said he knew nothing about that. When asked about the phone-call with the previous NHS consultant confirming UMND, he said the call had not occurred despite the confirmation email in lieu of a hard-copy letter that never came. When I asked if he had looked at the MRI from a few months previous (which was not of my brain anyway) he said that there were NO MRI's what-so-ever despite the outpatient records, and my best friend attending with me. Recalling all of this gaslighting now makes me feel physically sick.
He “supposed” I should seek a private consultant so I didn’t have to play merry-go-medicine longer than necessary. As I understand it now, was a deliberate attempt to clear his roster of someone who already had a complaint open regarding Dr. Must-Finish-His-Snack-Rather-Than-Do-His-Job, and who had a file in hand of every single lie and gaslight the NHS had already subjected me to.
Following several private appointments and tests out-of-pocket, none of which we could genuinely afford (plus the consultant doing his consulting from Greece) Primary Lateral Sclerosis was the prize at the fair and I was referred back to the NHS who gladly ran with it advising me that it was the "benign" cousin of ALS with no treatment options! A win! Case closed! Refer her to physio! Done and dusted. And all that pesky gaslighting? What more does she want? She's got her diagnosis!
A doctor has yet to explain to me how “benign” a condition is when it drastically alters your physical functioning progressively from onset until death from natural causes comes as a reprieve. It also has the potential to develop into the big bad Lou-Gerigs!
Where Do I Go From Here?
Here's what I know. There is no widely accepted treatment available to halt the progression, there is no determinate as to how fast or slow the progression takes place, and the diagnosis of PLS is so rare that most studies around it are focused on whether it kills you OR how likely it is to develop into the motor-neuron disease that certainly will (the answer is very). It doesn’t -feel- benign in the slightest. So I'm kind of navigating late onset disability on the fly here! And how did that complaint end? I became so focused on attending appointments and getting answers for my symptoms that I wasn't capable of keeping track of the different services demands to fulfil every requirement for a proper review of the complaint. Also the complaint and the review have different and overlapping statutes of limitations on their validity. Also, regardless of the NHS's insistence on piggy-backing departments for diagnostics (then denying they're doing it), you can't piggy-back your complaint across the service. Each complaint has to be made individually referring to the individual departments it pertains to each with their own bulk of evidence and NO copy and pasting. A lot of the time people believe that there will be some American drama outcome where wronged parties are awarded ridiculous sums of money or even a sudden influx of appointments and treatments to make-up for the mistakes. Without going into the details of achievable outcomes, the usual outcome is simply apology and a promise to "do better" in future. And that is exactly what I received.