Ostroeuropa wrote:I've always kind of thought the NHS was pretty heavy into patient agency but recent experiences have really illuminated how that just isn't the case all the time and you get them just stonewalling you in some circumstances.
Someone close to me has a tumor and has for a while. They're now stable provided they take the appropriate meds, it's not getting *worse*. The radiotherapy stopped the growth. They have a gene that makes them resistant to chemotherapy.
So... surgery.
Ahhhh but it's not getting any worse and you're not gonna die so we're not gonna do that.
...
months of "Quality of life" discussions.
Ahhhhhh but it's not getting any worse-
Quality of life, really wanna do it.
Not getting any worse, if it grew we would, but it's not, soo...
It's better to have it now when i'm young than risk it when i'm older, right?
Yeah but it might not need to happen at all, you're fine.
I'm not fine i'm like, in pain daily?
Yeah but you know, surgery is risky and-
*(months of this shit)
Look. If I don't get some more options i'm going to stop taking the medication and then you'll *have* to operate.
OH OK we'll see what we can do, don't do that.
Holy shit that took too long. I get that they're all "Muh unnecessary medical risk", but we were super clear it was a quality of life thing and just got nowhere with them.
At a certain point it's obvious the patient knows the risks and is prepared to accept them. This isn't some wacky scheme they cooked up. It's a thing that *could* work and even the doctors acknowledge it.
Yes it's a super fringe case because she got like, the worst dice rolls. Tumor, resistant to chemo, allergic to the dye they use for scans. So it might be a case of opening her up and being like "We can't do anything about that, close.". They don't *know* what's going on in her head. Maybe that's why. Maybe they don't know how to proceed with this case because if they had the scan they could accurately gauge how risky the surgery is, but without that information they're just stuck in a recursive loop. They kept sending her to get scans too and she was like;
I'm allergic to the dye.
Followed by;
"Well, we can try without it"
-Scan is useless.
Rinse repeat about once a month every month until she just told them she wasn't going to come in for scans anymore unless they had new ways of doing it.
That truly sucks.
Scans aren't easy to schedule - obviously if the patient is referred and arrives and no-one bothers to tell the scanning team that she's allergic to the dye and it can't be used then that scanner is indeed useless to her.
You need to have it out with her GP - she can't have the scans because she can't have the contrast dye. Pick another scanner with a different dye. I'll not list examples, I'm not a medical person and I obviously don't know what your close person has.
