Red Tape

Once again I find myself having to apologise for the lack of posts of late. There’s been a fair bit going on. So here’s what you want to know, I suspect:

The scan results were a mixed bag. The last chemo has stabilised some of the tumours but not others. The short story here is that I need yet more treatment.

I’ve decided to go for a course of Interferon (alpha, if I’m being really picky), which you can read about here and here if you like. This starts off as a low-dose weekly injection, for four weeks. The good news is that these can be given at home so I don’t have to do any traumatic hospital visits. After the four weeks, I’ll have a blood test, they’ll check for toxicity and then if all is well I’ll progress to a higher dose. And so on. There apparently need be no end to this treatment. If it’s working and I’m OK with it I can have it pretty much all the time. I’m not so keen on doing that though as some of the side-effects of long-term use aren’t very nice, so I’ll probably have breaks here and there. The not-so-good news is that it doesn’t work for everyone – some people respond, some don’t. And the way it works is also not fully understood. Still, it’s worth a try eh?

The bad news, at least for now is that the prescription process has presented me with the first real treatment hurdle. When we were at clinic discussing the treatment with Prof, he decided to check if it was in stock so we could take it home with us there and then. After a while of to-ing and fro-ing, it transpired that the Prof could not prescribe Interferon without getting an approval from management.

Read that sentence again if you will, and consider what that means. The Prof, a senior consultant in his Trust and world-renowned in his chosen field has to have his judgement questioned and rubber-stamped by a non-clinical manager. My first thought was that this is because the drug is very expensive. We looked it up when we got home. It’s not, relatively speaking, and about as far from expensive as you get in the drugs world.

He asked us to go and get a coffee whilst he got his “rottweiler pharmacist” on the case. So we did. About half an hour later the Prof reappeared. Things were even worse. He now had to write a letter of application to the management and attend a committee to have his request approved. To say we were gobsmacked is an understatement. That was almost two weeks ago.

Prof has got the Oxford end pretty much sorted, he tells me, but he also had to apply separately to Milton Keynes. That application is ongoing. I’m anxious though, because we go away on holiday on Saturday for two weeks and unless it’s sorted this week, treatment will be delayed even more. Not that I like having treatment, you understand, but now I’ve decided to do it I want to get on with it.

If absolutely necessary, we’ll pay for it ourselves, however I don’t know if dipping into the private system will the jeopardise any further treatment I might expect to get from the NHS. Why does this have to be so difficult?

So, fingers crossed this will all work out by Friday so I can properly enjoy the holiday. I really need to get on with this.

Oh, and by the way, the image above is just for your enjoyment and me to show off, no other reason. Stop by my Flickr page, why don’t you, and see the pictures I’ve taken recently. Enjoy.