So I don't want to jinx it, but I think I might finally be sorted.
I phoned them last tuesday and they said my claim had been completed, and a payment arranged, but they couldn't tell me any more and I would have to wait 5 working days for a letter.
So yesterday I phoned as it was 7 working days (9 normal days), they said a payment was arranged for the 20th for the money since august, then monthly payments after that which work out to be the rate for standard care. They said there should be a letter in 5 working days explaining it all, so the money will come before the letter. They couldn't tell me what the letter actually says though.
So I if it turns out to be true next week I'll let you know once the letter turns up, but I think the wait finally might be over.