Thursday, 5 August 2010

I'm not making this up...

So here's the situation. The PCT have continued to prevaricate and have not made a decision on whether to approve the funding for Plerixafor, the drug requested to support Adam's stem cell harvest. Very magnanimously they have agreed to reconsider the request at a meeting next Wednesday, but even then there seems to be a more than even chance that they will reject it. In any event the harvest process is supposed to begin tomorrow and continue through to the end of next week. A decision on funding next Wednesday doesn't exactly fit with those timescales.
I could go into the politics of it all, the debate on who should pay for what, when and why. But frankly I DO NOT CARE. Have the debate in your own time, not when the clocking is ticking on my son's future. Decide amongst yourselves. Have a PCT party with fellow bureaucrats in neighbouring trusts. But don't drag your heels and scratch your arses whilst we are hanging on here waiting and wondering what's happening next week with Adam's treatment.
Actually I can tell you what is happening next week with Adam's treatment. The sum of Twenty Six Thousand Pounds from Adam's Appeal is going to be transferred into the private patient account at the Royal Marsden Hospital and we are going to go get ourselves some stem cells.
The PCT can go screw themselves.
I am not waiting around whilst they pass judgement on my child yet again. I'm so sorry he didn't respond to upfront therapy in a textbook fashion. Because let's face it that's what it boils down to. It feels like he's some kind of trouble kid that the authorities don't know what to do with.
It was one thing to face the prospect of immunotherapy abroad because the UK decided to implement a brand new trial rather than the proven US treatment (the main thing they did copy from the US was to exclude kids like Adam that take longer to respond). But I never thought we'd be funding Adam's treatment inside the UK.

This had better work now. We'd better collect a ton of stem cells. I'm demanding value for money.

I'm also incredibly pissed off right now. Though, I might add, not at The Royal Marsden itself. Their hands are tied. This is clearly the system and the PCT at fault. Unfortunately I don't have any specific individuals at which to point an accusatory finger (or two).

I'm also not making any of this up, for those of you innocent things out there who think this is unbelievable. It is unbelievable, but it's also true.

1 comment:

  1. Very well put Nick - it's an appalling situation to leave you in!