We went to meet with the PCT and our MP yesterday, what a waste of time. They had already made a decision last Friday, Medical Director of the PCT thought he was doing us a big favour by meeting with us. He also said that he had had an hour telephone conversation with our Oncologist and had corresponded with the consultant, and he doesn't usually do that !!!! Well it's about time he got off his throne and met with the people who are not just case numbers but human beings, maybe he will then see what devastation his decisions make to a families life. The lady chairperson was sympathetic and stated that if it was her husband ill with cancer she would be doing exactly the same as me, to which the Medical Director responded with a half laugh and a raise of his shoulders and said "I wouldn't", almost scoffing at the very idea. I just sat and stared him out, I have never met such an arrogant man. Tom just kept asking what he should do , as all agreed there is no other treatment available to prolong his life, they would not answer him, then the MD stated he should ask his oncologist what he should do, to which Tom replied "the oncologist wants me, to have the drug", so round and round it went. NO they are not going to fund the drug, NO they don't know what else to suggest, and YES they will charge us for any NHS treatment should we fund the drug ourselves, as the rules stand at the moment. I am asking for that today in writing. I am also going to contact the Oncologist on Thursday (she is in Germany at the moment). The Medical Director told us that she had stated that she will be recommending that we do not fund the drugs ourselves, as she had told him we were thinking about it,( don't think that helped), but I need to know why she has said what she did, why have they encouraged us to get funding for the only drug available if she is not prepared for us to fund it ourselves, maybe she thinks the NHS should fund it, or maybe she does not think it is as good as stated, need an answer. We have to have our case looked at by another PCT now, not hopeful.
I am so fed up with it all, feel very low at the moment, bit tearful, not my usual fighting self, but I will pick up by next week I am sure.
Steffy
FormerMember
Hi Alison.
Yes we emailed her today with a brief outline of my situation and are waiting to hear back.
I left a message for Tomdog yesterday and I suspected that your absence meant you had really been hit hard by this. That man sounds as though he hates his own family - and I'm sure it's mutual if he's as callous and discourteous as he has shown himself in your case. Do you think a few of us could wheel Tomdog in a hospital bed to as close to Number 10 as we can get? Suitable notices attached? I would gladly help, especially as I have been misdiagnosed and it all helps with the news value.... xxx Penny
I have an appointment with my consultant on Friday regarding my future treatment for avastin that I have to apply to get funding for this drug, he suggested, that Nice can't fund.I am going bring your points,to his attention to see what we could do to help tomdog and others in the same position,also I will contacting a member of my local support group,who as just returned from the National Cancer Conference in Manchester,this was a 4 day event, and she was representing our group in Carlisle,this was one of the main points she had to bring to there attention as there is more,& more people in this possition now. I think that all cancer support groups and any other organization we can obtain help from to get this point accross to No.10 and the NHS that we need the help now.I thought that the way you were treated at your meeting was a total disgrace and I will tell my consultant how you both treated by this most ignorant man,and see what his responce is I will keep you informed you have my support at all times.
thank you so much for caring and supporting us. I hope your attempt at getting Avastin is better than our attempt to get Sorafenib, we wish you luck. We have thought right from the start that we would be refused funding, as NICE (No It Costs Extra)have yet to approve/disapprove it, not looking at it until 2009, but you have to try and make these PCT's and the Government change their minds. Reviewing the Co-Payment , is not good enough, they need to say that we can have our usual care now, not hinder us by stopping it if you buy the drug yourselves. We are not hopeful that another PCT will say yes either, as it all comes down to cost, and they are not funding costly cancer drugs full stop. As I have said before on this site, if the drugs cost over £30,000 per annum,(the drugs for ours comes to £30,048, we were willing to pay the extra ha ha!) then the PCT's are told not to fund it. So now you know how much your life is worth. All we want it 2 cycles of treatment to see if it makes a difference, not a whole years worth, just want the right to try it, but the man at PCT world, he say NO!!!!, and he does not want our case to be looked at by a PCT that has already funded the drug because that will be bias in our favour. I think he really really does not want his PCT to have to pay for this drug come hell or high water.
We really wish you luck and all the best with getting funding for the drug, just give it a go, because you can, that's what we do now, just keep going just to be a pain to them.
