Hull Primary “Care” Trust overturned the original decision to deny me life changing treatment, and now we can look forward rather than back, and with some hope rather than fear.
But even then actually getting the information was like pulling teeth.
The original appeal was to be heard last Friday. They cancelled it and didn’t bother telling me.
Then the tapes weren’t given to the typist until Thursday. I asked to be informed by phone. No can do. Email ditto. Eventually I found someone in the PCT Management Team with a functional beating heart, and she emailed me the good news.
Reading this makes you immediately think; “Who on Earth do these people think they are”, talking about something of which they have no professional competence on which to comment? My GP says the stuff he gets may as well be in Chinese, but he does what GG says with no question because the man is literally the top man in this area in the country, if not beyond.
So how DARE lay people, let alone Doctors who are bureaucrats and not practising clinicians write the following. My emphasis added.
Panel members considered the likely therapeutic benefits of the procedure and its likely cost effectiveness and also considered the evidence of effectiveness albeit from one case report. After considerable discussion (about what?) panel members agreed to fund one course of intravenous immunoglobulin. Oh thank you I’m so grateful.
But it’s game on, which is all we are bothered about, but there will be Merry Hell to pay when it’s done and dusted.