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
I just checked out the situation in Austria about this drug, and discovered that there's no problem here - in fact, they're proud of the fact that over 100 cases have been treated - though for kidney cancer. I also checked with our local health office, as I teach English to some of the high-ups, and they told me there is no problem with getting drugs which have a proven effect - and no 'cost-effective' rubbish.
So, is good old GB and the NHS to be put to shame by a tiny country - actually your medical director is further dragging down the reputation of the UK in this respect! They already don't have a particularly good reputation - at one time they tried to get medical staff from Germany and Austria. The reaction of some of the people I know was 'what ! work there - in that system -no way!'
I don't want to give the impression that Austria is the isle of the blessed - it has its problems too. But not this particular problem.
this country is not called "Treasury Island" for nothing! and lets not forget that a large percent of our MPs are Scottish, and they have a completely different take on their care system then we do!!!!!! and please anyone who is scottish i do not mean any offense there, but with the free tuition fee's to scottish students in scottish universities, £5. for prescription charges, then you look at Wales, same again, but you don't pay for parking in hospitals anymore and the prescription charges are free again, no offence to the welsh, its the goverment that has let this happen, who are the mugs in the UK who "Shut up and put up"? yes its us, the people who live in england and i wonder how on earth we ever got to this point in our history where, its disgraceful that we live on this island but we are penalised for where we live!!!!!!!!! oh i am so angry, no wonder i have high bp!!!!!
As you've said, you and Tom have both paid NI for many years so, if for no other reason, it is totally immoral to refuse funding. Can you imagine if your house burnt down and your home insurer said sorry, we can't rebuild it because it's too expensive. If the PCT isn't prepared to fund Tom's treatment, they should reimburse all his NI contributions . . . What's the point of paying if you don't get the treatment you need. I'm so angry on your behalf!!! Love, Kate xxx
