Is it time to rally the troops over this business about the PCT's not funding treatment or refusing to pay for treatment if you buy the drugs yourself.
Tomdog and Steffy are the tip of the iceberg but need our support.
Please take a look at Steffys blog "Refused Again" and give us some input.
FormerMember
someone who has the no how to set up a petition that we can all sign online, get our friends, family anyone we know to get it signed, so can anyone here do that?
right behind you both tomdog and steffy xxxxxxxxxxxxx
(See Steffy's posting). We just need a few strong chaps, a suitable bed, a map of London, and Tomdog not to mind taking being centre of attention in prone position! I'll volunteer! xxx Penny
Thanks so much for your support, it means a lot to us, the petition that is already up on the this site is the best one to continue supporting , send it to all your friends and tell them to pass it on to everyone in their address book.
we have gone past hoping that the NHS will fund this drug now, we will do it ourselves, that is why we are putting our house on the market, move to a cheaper place, get some 'Drug Money' together. I had an annuity come out today, was going for a good holiday, but it has to go to the drug fund now. Never thought we would go broke at the hands of the NHS. Think we might go to Judicial Review, depends on how much it will cost us, and if that money would be better spent on drugs. Only asked for 2 cycles of treatment, to see if it made a difference for Tom.
We shall see what happens. People keep asking us about moving to another area , different PCT, well that would mean changing our doctor and starting afresh in a new county (not a problem) , but we may go and live somewhere we do not really want to , and then find that the PCT is not funding there also. No PCT in the country is routinely funding this new drug. That is the trouble, it is a new drug, and not a lot of what the NHS calls 'Robust Evidence' is available, and there will not be any' Robust Evidence' if they keep refusing to fund it. It is expensive and the PCT's do not want to fund it, same as Avastin, and Sutent, you have to fight in some areas to get this as well. This is the first drug in 25 years to have any effect against Liver Cancer, it is not a cure, it just prolongs your life by halting the growth of the tumour. Have to get off my soapbox I am getting splinters.
