Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

NOT SO NICE

peachy
Posted by

Please go to Cancer research uk blog on NICE refusal of drugs. State that you want to get rid of NICE. They are not fit for the purpose. They do not have cancer victims interests at heart. We want them disbanded and put in place a fairer, consistent, organisation that challenges these drug companies. Comes up with a solution for payment if the NHS cant/wont pay for treatment. Supports researcers and helps people not hinders them. (Lets get a movement going. Millions of people are affected by cancer and i refuse to believe that a better system cant be introduced) oldhamer

JulieWW
Posted by

There is a very good article by Professor Waxman of Imperial College in the Times

http://www.timesonline.co.uk/tol/comment/columnists/guest_contributors/article4481345.ece

He points out that

(a) PCTs are NOT legally obliged to follow Nice recommendations (so therefore why bother with Nice anyway?)

(b) Nice costs £30m a year

(c) The UK spends more on drugs for constipation than it does for treating cancer.


"Our country should no longer underwrite the costs of NICE, which are currently at £30 million a year, and due to increase. This is a sum that could usefully be spent on providing drugs for cancer patients in a country where we spend less on cancer treatments than on drugs for constipation -"


I agree with you that cancer patients in this country URGENTLY need a Patients Watchdog which is founded and run by them, to put the case for cancer treatment in the UK to match global best practice for every cancer. There seems to be no 'Voice of the Patient' when it comes to cancer.

(If such a 'voice' already exists, please tell me, as I don't know of it!!!!)

Julie.
whitters
Posted by
Hello
I don't believe NICE are there for the benefits of any patients, I believe they are an offshoot of the UN? I have no real idea of their purpose but I do know that my endocrinologist said he HAD to test me for celiac disease with my autoimmune disease, and CFS/FM as it was NICE guidelines. Hence I assume that doctors feel that they have to do as NICE says.
Good luck at getting a voice. I am a member of the forums for hormonal diseases and trying to get heard, even for something which shouts as loud as cancer seems almost impossible in todays world.

God bless
Whittersx