22 Sep 2009
Furious
The reason for being absent for a couple of weeks is mostly because we were away on holiday. Yes we had a great time, thanks. There is another reason too and it’s mainly that which really doesn’t put me in the mood for writing.
The day before we left for holiday, I was informed that my local Primary Care Trust (who shall remain nameless for the time being) have refused to fund my Interferon treatment.
You can imagine how this feels.
The reason is that there is not enough general evidence to support the use of Interferon for the treatment of Osteosarcoma. There IS evidence of it’s effectiveness, but not enough to convince the powers that be that it’s worth it. Our response is: how is the body of evidence for its use ever going to grow if it’s not used to treat rarer cancers? Please also remember that this drug is cheap as chips, relatively speaking, so we’re not asking for hundreds of thousands of pounds to be spent.
I really don’t have a lot more to say about it at this point. We have lodged an appeal. We are waiting. Again. Meantime, I get no treatment and things get worse.
Watch this space.
That offer of ram raiding the storeroom they keep it in is still there.
Johnny will ride passenger.
Lard
September 22nd, 2009 at 4:57 pmpermalink
How much is it? If you can buy it, does that or would that stuff up ‘the system/procedure?’ Sorry if this is a daft question.
Karen Parker & Mr Ray
September 22nd, 2009 at 8:19 pmpermalink
Karen, cost isn’t the issue per se. If it was the only obstacle I’d buy it myself. But as you point out, once I cross to the Private system I’m pretty much denied NHS treatment thereafter. And my Prof does not see private patients and he’s the last person I want to lose. So we must ride out the system first and THEN we’ll try and buck it!
mac_kix_windoze
September 22nd, 2009 at 8:41 pmpermalink
Oh b*****r, why oh why does the NHS have to be like this in terms of the private/public divide? It seems that in the current climate government policy will soon be that we need to subsidise our care. That is what you would be doing, can they not see that? Aaarrgghh! Thinking of you all always xxxxxxxx
shortly
September 23rd, 2009 at 12:30 ampermalink
This gets sillier–if sharing costs could be sorted without the mean minded and spiteful repurcussions, it could be a win -win situation for both sides. We googled ‘refused NHS drugs’ and found 20 pages of response–obviously a mess that needs sorting at the highest level. Thinking of you all here in the storms.
mum and dad
September 23rd, 2009 at 5:11 pmpermalink
Hi All at your end………………..I am gobsmacked, being in the NHS it never fails to suprise me for it’s lack of insight – we spend mountainous amounts of money on patients that chose to self indulge for whatever reason…….and then never change post treatment and surgery (ie those that need interferon for hepatitis reasons may re contract that disease if they dont change their practices!) and little (young) you, taxpayer, father, husband, son, friend is stuffed by the red tape of a postcode lottery!! It’s stinks and if thats the case why do they bother paying benefits to those who have never paid in?
I am not racist and believe in equality but if you had just popped in from abroad they wouldn’t dare refuse you for the sake of repercussions?!! Lots of love to you all x x xx x xTx
Tess Kidd
September 29th, 2009 at 10:14 pmpermalink