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I'd also like to talk about my experience of immigrating-while-disabled bc this is a really important topic that there's little info about.
In late 2014 I was offered a 12-month research contract in the UK. I accepted eagerly bc it was a great position & an adventure.
I thought, because the UK has a well-known public healthcare system, and I'd be a tax-paying resident there...
...this meant it wouldn't be a problem to access the medication I need to treat my severe, diagnosed sleeping disorder.
Because I had noted on my job application that I am disabled, I was required to provide a fit note from my GP...
...and to speak with HR so they could also ascertain my fitness.
When I spoke with the HR rep, she didn't seem to find my sleep disorder significant at all...
...though she did said "oh that *is* concerning" when I reported that I am #ActuallyAutistic and deal with chronic depression.
I didn't hear from the university for about 3 weeks after that and became very concerned that they'd decided I was 'too mentally ill'.
Most of my friends and family told me that I shouldn't have disclosed my disability.
I told them that I was sick of hiding my disability and being unable to access accommodations for fear of discrimination.
As it turned out, the delay was just typical university bureaucracy, but I found the response of my abled acquaintances very revealing.
Anyway, fast forward to my arrival in the UK. During my orientation, I noted to my HR rep (a different woman) that I am disabled...
...and need chronic medical care, including medications. I asked if I needed the university to facilitate access to care.
She said no, just register at any surgery in your neighbourhood and they'll be able to help you.
Once again, this was treated very casually, and there was no suggestion that accessing the medications I needed might be a problem.
Within my first week, I'd made an appointment at my new GP surgery to discuss my medical history and needs.
I noted to the doctor that my primary need was for the medication that kept me awake.
I told her that I had brought a 3 month supply with me from Canada, and also noted that I was experiencing some side effects...
...so it would be helpful if we could look into other available treatment options, but that either way, I might be needing specialist care.
She said she'd look into it, and that was that. Again, no indication that accessing my medication or specialist care might be a problem.
6 weeks went by and I was running out of my medication. I made another appointment with my GP to see what was going on.
I saw a different doctor at this appointment and she informed me that GPs can't prescribe the medication I needed w/out a specialist's note.
She told me that there are no sleep doctors in Wales, and that the medication I needed (modafinil) is typically handled by psychiatrists...
...so she provided me a psych referral.
About 2 weeks later, I received a letter telling me I had a telephone appointment with psych services in another 4 weeks.
By this point I was rationing my medication to every other day, and struggling to keep up with my workload.
The day of the telephone appointment came and I spoke with a very pleasant woman who asked me if I was at imminent risk...
...of harming myself or others. I told her no. She asked why I needed psychiatric care.
I explained that I didn't, really, that I have a neurological sleep disorder and needed medication for that.
She explained that the psychiatrist I'd been referred to took one look at my file and dismissed it because it had nothing to do...
...with his practice, but that he shunted me on to the acute care psych team because of my history of depression & anxiety.
They of course could not do anything for me, because they don't prescribe meds, they basically exist to talk down people who are in crisis.
I immediately called my GPs office and said I needed an urgent appointment, and explained why.
They told me that wasn't urgent, and to call back at 8AM the next morning to book a same-day appointment.
(NB: this is not accessible for someone WITH A FUCKING SLEEP DISORDER but whatever. I managed to do it bc I was getting desperate.)
I saw the same doctor I'd had my 2nd appointment with and told her what the psych services woman had said.
She reiterated that there are no sleep specialists in Wales. Okay, I said, who can you refer me to then?
She repeated again that there are no sleep specialists in Wales. Fine, I said, can you refer me out of region? I'll go anywhere.
Nope, they can't refer out of region. Okay, I said, is there a way I can get a specialist's note from a private clinic?
She repeated, there are no sleep specialists in Wales. I honestly felt like I was in a fucking episode of The Prisoner.
So finally I got rather irritable and said that I had about 2 weeks of medication left, I needed it to function, and I wasn't leaving...
...until she offered me SOME avenue to pursue to access it. She reluctantly said she'd *try* to refer me to a neurologist...
...but that "they don't really deal with this kind of case". Whatever. As long as I had the referral I could sort it with the neurologist.
Four weeks passed and I heard nothing. I phoned the referrals line at the hospital. They had nothing on file for me.
I phoned my GP, who insisted they'd sent it - about 2 weeks after I'd asked for it, mind - and by the next day the hospital found it.
Except it was a non-urgent referral. With a waiting list of a year or more.
By this point I was taking my modafinil once or maybe twice a week, and missing work.
Phoned the GP's office, asked for an urgent appointment, was told it wasn't urgent. Booked a same day appointment next morning.
This time, I saw a third doctor, who explained to me that "urgent referrals are only for suspected brain tumours".
I again tried to explain that I LITERALLY CANNOT REMAIN CONSCIOUS without these medications and they were endangering me, and...
...what exactly can we do, because we really, really need to do something, NOW.
She told me she could put through an "expedited request", which might get me a quicker appointment but it was @ the neurologist's discretion
YES, FUCKING DO THAT, I replied.
So anyway. A month passes. I run out of medication completely. I go AWOL from work because I am basically catatonic for a week.
During that week I subsist on water and a block of marzipan I had in my cupboard because I don't have the energy to shop for food...
...or even to remain awake long enough to wait for delivery.
At the end of the week, I phone my parents in tears because I'm desperate and panicking. My mum flies out about a week later.
I finally have an appointment with the neurologist at the beginning of October. I'd arrived in the UK at the beginning of April.
He agreed to provide me a note for modafinil, but reduced my dosage to a useless level bc that was all he could do about the side effects.
When I asked about other stimulants he said "I don't prescribe those."
Why not, I ask. I don't prescribe those, he repeats.

[gif of Rover, the man-eating ball from The Prisoner]
Whatever. I've got the modafinil at least. I can ration it on weekends to make up the dose I need.
Two weeks go by and we've heard nothing. Every day my mum or I rings the GP and they tell us they haven't received the note.
Finally, after leaving many messages for the neurologist, they call back to tell us he's on indefinitely leave.
He fell off his horse the day after my appointment and had never dictated the note.
My mum finally went to his office and refused to leave until they transcribed and faxed my appointment notes to my GP.
I was quite sure I was going to have to pick her up from the police station, but somehow she got them to do it.
By that point, we'd also booked an appointment with a private sleep specialist in London.
They said they needed to perform their own PSG/MSLT on me to be able to prescribe what I needed.
And so £3000 later, at the beginning of February 2016, I finally received another prescription for the correct dose of modafinil.
I'd missed 3 months of work.
Now, the absolutely horrific level of care I received was absolutely a factor of a severely underfunded health system...
...the kind of stuff I experienced is pretty common for chronic patients in the UK, unfortunately.
But it's significant from an immigration point of view because I had NO idea what I was walking into when I decided to move to the UK.
I had no idea that, if you have a diagnosis, have received your visa, are paying taxes, and residing under a universal health care system...
...you can still be denied essential care because of pure bureaucracy.
I had no idea that a diagnosis is not necessarily internationally transferrable, and you may need to be re-diagnosed within your new system.
I had no idea how to navigate the UK health system. I thought universal healthcare is universal healthcare.
I didn't know that second GP was fucking lying about there being no sleep specialists in Wales.
I just didn't know. And it makes me very wary of moving internationally ever again, even though that's also something I very much want.
I do know that I will have to be much more cautious about investigating healthcare systems, and reaching out to the specific...
...clinics and specialists I'll need care from if I ever do move again.
I suspect I'd probably be able to get by again in the UK because I know the system there now, & I'm on file with the private sleep clinic.
But when I see interesting-looking PhDs elsewhere in Europe, or in Australia for example?
The possibility of going there, and not being able to get the treatment I need TO LITERALLY REMAIN CONSCIOUS gives me great pause.
And I think, in addition to addressing how immigration law oppresses disabled folk, we also need to discuss how...
...inaccessible healthcare is when immigrating, and how this makes immigration itself inaccessible for many disabled people.
Oh, ALSO. A piece of advice if you ever find yourself in the position to immigrate as a disabled person...
...find illness groups for the country (and if possible the region) you are moving to BEFOREHAND.
I'll be honest, illness groups are not always my favourite spaces, but they are invaluable in terms of navigating care systems.
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