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Kidney cancer

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

Cancer Drugs Fund - is it working ??

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Hi All

You may be aware since last October when the new Interim Cancer Drugs Fund (ICDF) commenced, julia Black and I have  been working hard to establish the position and the process to be followed for any of our Kidney Cancer patients who may need to rely on this new fund in order to access new treatments that otherwise the NHS would deny  them.

We know that the ICDF process is not as straightforward as we had hoped, and we also know that patients have very little, if any, involvement in it.  Sometimes patients aren't even aware that the Cancer Drugs Fund can be used by their Clinicians to pay for the drugs they need.  Fortunately, we know some kidney cancer patients who have successfully received funding for new treatments that previously would have been denied to them That is great - but it needs to work for everybody who entitled to treatment.

I am keen to make contact with anybody who has been refused access to kidney cancer  drugs via the new Interim Cancer Drugs Fund, or hear from anyone who has been initially refused and has since successfully appealed against the decision. Or in fact any detail which will help us get a better picture.
We have tried to get details of how many  KC drugs applications are being funded but several Health Authorties are refusing to supply information even when we ask as a freedom of Information request - To be honest that is unacceptable. 
Any information  you can give us will be treated as entirely confidential of course but all information wll really help patients now and in the future .

If you have any information that may help us find out more about what is happening in reality with regard to the new fund then I would be really keen to hear from you.

Please email me on contact@kidneycancersupportnetwork.co.uk

or you can send me a private message via this forum

If you would prefer to chat on the phone then please  drop me a line with your telephone number and I will call you back.

It will be really helpful to the research we are doing if we can find out more from patients directly affected by the new Interim Cancer Drugs Fund.

Many thanks in advance.
Rose Woodward
Kidney Cancer Support network