NICE are holding a question time in Plymouth Wed 17th Sept I will be dragging my wonderful uncomplaining husband to this event if anyone has any questions they would like putting forward just let me know.
I am flying up to Manchester for grand daughters 20th birthday this Thursday so when I get back next Monday it will be back to the more serious stuff, poor Ian he gets all the s…t gigs.
Love Debsxxx
where abouts in plymouth debs?
xxx
It is at the meeting rooms Plymouth Pavilion click on the web site and fill in the form they should email you back with an invite.
nice.org.uk/aboutnice/wh…ptember2008.jsp
Love Debsxxx
just got back from Plymouth what a bunch of a…holes!
They said it was Question Time so I cant really complain they would not give answers they were better than any politician I have ever met at dodging questions! After the introduction they showed prices of drugs showing how expensive they were, when it was pointed out this was in dollars they told us to devide it by 2 this would give the correct price. This was for the drug sutent they had said it was 70k the price was 21000 when it was pointed out this would make it £11000 more than 50k cheaper they did not know where to look and very swiftly moved on. Unfortunately for them it was my turn and I questioned them about avastin only extending life for 6 weeks. I told them I had it in Feb and we are now in Sept so that took me well over the estimated 6 weeks so did this now make me cost effective?
They made the remark that if we did not like the fact that certain drugs are not available we should write to our MP.
You may all be pleased to know that light refreshments were served so for those that wanted lunch was very enjoyable.
Not wanting to waste valuable funding I declined.
Love Debsxxx
Well done Debs for putting them on the spot, they are know for their crazy numbers, I have read about this, I think they - the government and NICE think that we are stupid and can’t do our sums. politicians and NICE are the same - they were set up by Charles Clarke, who says it is a measure of NICE success that they get alot of hits on their website…ridiculous and a disgusting waste of money.
Catherine
Hi Catherine,
they said their website was as easy as google we took them to task over this as well. You filled in a form on site and then they sent an invite, we filled in and never heard so as I am an adopted member of a kidney charity Ian and I went with them. The figures stink but they all look very well off it.
I will be contacting my m.p. as they advised and will ask they look into their expenses as I smelt a big juicy rat.
Love Debsxxx
I am going to have a look on their website!
The trials of taxol and avastin in the States showed progression free improvement of taxol plus avastin over taxol alone but virtually no difference in the survival stats of the two arms. Thats why the FDA decision was disputed.
I know one of the mysteries of cancer treatment is that no one can tell for sure who might repsond to a particular treatment but the data on avastin’s efficacy for breast cancer is not good…it is not a wonder drug…good on anyone on it…but it concerns me greatly that some people who are not on it could get to yearn for it like it is a wonder drug.
Numbers and statistics do matter. Otherwise we would all be utterlry mad to put ourselves through any of the treatments we do. (but maybe we are!)
I’m not a fan of NICE but I loathe the hypocrisy of the pharmaceuticals more. If avastin is so wonderful then show the data and provide it at a reasonable price.
Jane
Hi Jane
I don’t any of us are under any illusions about “Big Pharma”. One of the strongest reactions from us patients today was to the attitude of the NICE board as regards negotiating prices with the pharm companies. Having listened to them repeat their mantra about the need for COST effective drugs They did not seem at all concerned that NHS drugs are not bought at a national level when common sense tells us you are far more likely to get a better price if you buy in bulk. They said they had asked the pharma co’s to have a think about what they charge… Their attitude was either a cynical “not our problem” or an astonishingly niaive and fatalistic approach to dealing with big business. Again I offered my services as a buyer and pointed out I would not require a pension as life expectancy was not good.
Love Debsxxx
Hi Debs
I agree that drugs should be bought nationally (I think) . I think also that the problem with our ‘national’ helath sevrice is that it isn’t national…the postcode lottery sees to that in so many ways.
My point is that NICE is not the lone baddy here or even a particular baddy. NICE has for example made quite bald recommendations on IVF tretament…the problem is not with the advice but with patchy PCT response (postcode lottery again.)
I know very little about NHS financing so very hesitant about this. French seem to have a much better syste,
My point about avastin is about the weight put upon clinical trials. As a patient, however ill I get, I never want to lose my intellectual capability to access whether I think a treatment is really worth doing. I never want to be media portrayed as a ‘desperate’ cancer patient.
best wishes
Jane