I have just looked at the BBC Homepage and it has under' News 'on the top left of the page an article about,
DRUG APPROVAL FOR THE NHS TO SPEED UP.
worth a read, talks about NICE and Postcode Lottery and at the end of the article it said,
Have You Been Refused a Drug,
How will these changes affect you,
Have you had to wait for approval of a certain drug.
So Tomdog and I emailed them and told them his sorry tale, and we have just had a phonecall to ask if it is alright to pass our details on, of course we said yes, as any media attention to highlight what some cancer sufferers are going through is of benefit to all.
Just thought it might be of interest to any other people who are having funding problems, maybe you would also like to add your own comments/weight to the issue on the BBC site.www.bbc.co.uk
Steffy & Tomdog
FormerMember
We went, we spoke, we lost yet again. They had already discussed the appeal last Friday and had found no new exceptionality. I asked what they expected me to do, as we agreed there is no other treatment available, they would not answer, suggested that I speak to my Oncologist, to which I replied, "they want me to have the drug", so it was on a circular spiral downwards. They have now referred the case to another PCT, which we do not feel hopeful about, as this is Postcode Lottery and they want to find a PCT that has not had to fund this drug before, not a PCT that has already funded as that would be bias.I can honestly say that the Medical Director will not fund this drug as long as he has a hole in his bottom, and he even said that if it was him he would not be working so hard to try and get funding for this drug. The trouble is that the moneyholders do not treat you as an individual case, they job lot you into average results and overall costings. I only asked for 2 months funding to see if the drug made a difference, but they look at it as costings for 1 years life gained, based on the worst results, hence the refusal, they also look at the worst case senario and said that all I will get is 11 weeks of not very good quality life extra. Whether that is true or not, (not by our Oncologist and Liver Team results) it should be my choice of whether I take the drug or not, not some Tropical Medicine Doctor presiding on an unelected panel of people, not all of whom are medical people deciding my future. I truly believe I should have the right to try the drug, especially when there is no other treatment available. No point threatening them with the BBC we have already been on the TV twice and it has had no effect on this man, would rather surprise him if the BBC get back to us, and let them spring it on him.Just fed up ,think it is making me ill, Oh yes forgot I am ill. So nice to have to fight so hard and get nowhere when you are ill, such a caring lot these people at the PCT.
i really don't know what to say to you both, i can't get my head round how they can do this. please get back to the bbc, they have to be made to listen somehow, also, email Carol Gibbons, she is the head of Cancer Voices, her email is
CGibbons@macmillan.org.uk
she is aware of the situation, just email her to get onto whoever is in charge of campaigning for this, its worth a try, anything is worth a try, if i can help in anyway then please tell me xxxxxx
love to you both on this very sad day for both of you and all of us who know and love you
We are very sorry that you have been turned down once again,having to fight for a drug that would help you it's a total disgrace if you are willing to try it they should fund it that's why we have payed our NI over all these years.Even though your oncologist and liver team have had good results and they wont even take that in to consideration ?it was on GMTV today that to celebrate NHS 60th birthday that they going to try and get these trial drugs through Nice, quicker we know what you are going through as I have the same situation,as I have to tell my oncologist on Friday if i want to try for funding for drug (AVASTIN) that might help me live a little longer i have been told that there is a 99% chance that I will not get it,so whats the point even thinking about it as it stinks from start to to finish.You have my support and keep fighting.
But I really hope that that awful man finds very soon that he, or one of his family, are in need of the drugs that he has refused you. Of course, being wealthy and fully aware of what the NHS situation is, I bet all his family are safely under private insurance cover. This is someone with no compassion, with no imagination. I am disgusted at this, but somehow not surprised. Many of these people are in these positions because they love power, not for the sake of altruism or any sense of humanity. Let us know if there is anything that we can do - I don't know what at the moment, but I just feel there must be some way we can get justice for you. xxx Penny
