@matigo I don’t think Mallarmé wrote it on the wall himself.
@tomas Apparently it was community acquired pneumonia, but aspiration pneumonia is still a risk. He can’t swallow things like rice pudding or porridge now, only completely puréed foods. I think the choking risk, combined with the fact that he can’t call out, and can’t press a button to call for help constitutes a medical need. My main basis for the appeal is that they didn’t bother to look for the information they would have needed to make an informed decision.
Anyway, thank you very much for offering to look at the paperwork, but I’ve filled it all in now, and just want to send it off and have done with it — I have a background in nuclear safety cases & Mr I is a lawyer, so although we’re not fully fluent in medicalese, we know about making cases. As you say, it’s really tough for people who don’t have those skills, or who don’t have representatives who do.
Even if you do, the frontline (“we have tried to make this document as clear and accessible as possible”) document talks about “primary health need” and refers you to a supporting document for further explanation . The supporting document is hundreds of pages long, and the bit that tells you which section to consult has been left as “xxx.” When you find the right section, it says there is no agreed legal definition. Apparently there are a few court cases where the definition has been argued, but basically the whole thing is as clear as mud.
// @kdfrawg
@tomas I just keep trying to remember that most people who have gone into such professions probably hate what they have to do too. I assume they didn’t say to themselves, “I only get one life, I’m going to make it count. I’m going to devote myself to kicking people when they’re down.”
// @kdfrawg
@tomas The issue that’s being decided is whether his care needs are “primary health needs” that require medical professionals, or “social” needs that can be taken care of by less trained carers. I honestly think it’s borderline at the moment, but it’s a progressive condition, and they didn’t really take that into account. The main grounds for disputing their decision are that they didn’t consult people who know about PSP or have worked with him. They really just used the hospital notes from when he had pneumonia, so they just didn’t gather the information they needed to make an informed decision.
The reason the distinction matters is that if someone has a “primary health need” then their care will be paid for by the NHS. If it’s a social need, then they have to pay for their own care until all their money is gone and then the Local Authority will start to pay.
Sometimes people with PSP qualify for payment earlier in the disease when they’re more likely to fall and injure themselves, and then have it revoked later on when they are unable to get up and therefore not at risk of falling. It’s a really stress-inducing system!
// @kdfrawg
@phoneboy That would be good — and having a goal should help you navigate the holidays.