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
