I've been waiting for an urgent referral since early September, i.e. nearly 4 months ago. Cyclophosphamide and other treatments aren't working enough for me, so I need to try a virtually-last-chance experimental biologic therapy, which only a rheumatologist can approve. But I've had no appointment, though the consultant had expected me to be seen fast.
Found out today why, when I saw my usual consultant at short notice: the NHS computer system lost my referral from early September. So it never reached the rheumatologist, and I was never given an appointment.
An urgent re-referral request is going through today, including the note that it should have been received in early September, is very urgent, and I am deteriorating and need to be seen fast. The consultant expects me to be seen very quickly.
The consultant was furious about the computer system letting us down, and hugely apologetic. I took it very well. Before I studied history (to PhD level) I was a computer science graduate, and learned about how difficult it is to remove bugs from large complex systems, often publicly funded ones that are life-threatening if they go wrong, no matter how much money you throw at them, or how much testing is done.
And at least now we know what has gone wrong steps can be taken to rectify the situation and get me that urgent referral, at long last.
I'm also doing a lot better now than a week ago, since my steroids went up after discussion with GP to 20mg. They're to stay high until I see the rheumatologist. Just hoping they don't need to go any higher. That is in addition to a cocktail of Azathioprine, Mycophenolate Mofetil, Methotrexate, and many other drugs to cope with side-effects and symptoms from my cerebral vasculitis and the brain damage it causes.