Fight For Life
Contents |
Overview
- What is the "Fight For Life" campaign?
My name is Rose Woodward and I am a Kidney Cancer Patient curently lucky enough to be in remission. In 2006 I started The Fight for Life campaign to get drugs for kidney cancer patients with a fellow patient from South Wales Mick Coleman. Sadly Mick has since died but at last we have been able to put the dream we devised together of a patient controlled website and forum into a reality.
It wasn't long before we were found by many other KC patients all over the Country who were trying to get drugs their Oncoligists wanted to prescribe for them, Keith Ditchfield was one of the first and he was being guided through the process by Julia Black, a friend of his family. Julia, also a cancer patient had been instrumental and very active in the Herceptin camapaign to get the drugs that some breast care patients, Julia included, needed to treat their particular type of breast cancer. Julia's advice was invaluable; she knew the PCT processes,she had the contacts with the legal profession from her Herceptin experience, she knew what the PCT's had to take into account and most of all she knew how to pull the case together and present it at the funding appeal panel hearings. keith acknowledged when he finally won his funding for Nexavar that he would not have been alive if it hadn't been for knowing Julia.
Meanwhile Mick was trying to put together a self made website so that we could let people know there was information & help available for people who were forced into drugs funding appeals. He did all this in between his KC treatment- he went through everything there was to offer and was waiting to hear whether he would be funded for stem cell treatment - this was finally refused as not cost effective and Mick died in 2007.
Kidney cancer patients needed practical support and advice to find their way around the PCT (Primary Care Trust) bureaucracy and complexities of the funding system for cancer drugs.At last with help from lots of people we have a fully accessible free website called The Kidney Cancer Support Network which gives template letters, booklets, advice and puts patients in direct contact with others who have been through the process. This can be so important.
We learnt a lot very quickly and had some marvellous back-up from leading renal Oncologists. The N C R I renal cancer studies Group to which I now belong, issued a expert opinion document which was invaluable. We shared our methods and template letters with patients families who were fighting on behalf of Mums and Dads and brothers and sisters. We had so many sucesses that soon, the PCT's, began to band together to make ever stronger policies and insist on even more impossible exceptionality criteria that they said must be met. But we persevered and won case after case. Since then other people like Kate Spall who won funding for her Mum Pam Northcott & Charities such as Bowel Cancer Uk and Breakthrough Breast care and The Roy Castle Foundation are doing similar work & helping patients with other cancers get the treatment they need.
How we challenge the PCT decisions isn't a black art ... you just need to know what they are asking for and present a watertight factual case, do your homework, gather the clinical information and familiase yourself with the particular policies that apply in particular PCT's. Anyone can do it once they understand the rules and know the processes. It can be learnt and we can lead you through it just as we have lead many patients & their families through it. Now everyone can share the letters and advice that helped so many patients get the drugs they need. We have an advice booklet published by a leading Barrister Peter Telford, explaining the legal position, The Rarer Cancer Forum has done so much to raise awareness into the different processes in different PCTs. There have been discussions in Parliament. Leading renal Oncologists have given us expert opinion documents. We have even won a Judicial Reveiw of the process in the High Court in the case of Kidney Cancerpatient Jean Murphy who was refused treatment by Salford PCT and who we advised and supported throughout her ordeal including the High Courts in London. Jean is now taking Sutent and her Oncoloist Professor Robert Hawkins at the Christie Hospital in Manchester, who asked us to help Jean when she was first refused funding, says she is one of the top responders to the drug he has ever seen.
For more help or for information about how you can help us carry on the voluntary work Julia & I do ,please contact me via by e-mail
- see our website for more details Click Here
and please join the Kidney Cancer Support Network patient forum where other patients can help you through the PCT funding process in your local area.
Contact Information
- To visit their web-site Click Here
- Please contact me via by e-mail
Announcements
Click Here for a list of all 2009 Articles
Click Here for a list of all 2008 Articles
Fight For Life Updated to 16-Mar-08
Fight For Life Announcement 01-Feb-08
- Last few days to sign up to the e-petition Click Here
Fight For Life Announcement 31-Jan-08
- Sutent Blister packs
- SUTENT APPROVED THROUGHOUT THE NORTH EAST 28-Aug-07
Disclaimer
Kidney Cancer Resource (KCR) is not influenced by sponsors. The information contained herein is not intended as a substitute for the advice of an appropriately qualified and licensed physician or other licensed health care provider. The information provided here is for educational and information purposes only. Early accurate Diagnosis (Dx.) saves lives. Please check with a physician if you suspect you are ill, never ignore Symptoms. To help your health care specialist make an accurate Diagnosis please keep notes of dates, times and details of your Symptoms. We are not offering medical advice nor do we consider links, individuals or articles accessed through this site to be offering medical advice.
E&OE - Errors & Omissions Excepted
As much of the information posted on this Web Site for peoples convenience is of a medical or technical nature, and may be a matter of life or death the E&OE is a Disclaimer showing that to the best of our ability information is accurate and correctly written or transcribed. Before acting on information on this site you are responsible for checking it with your relevant medical team. We can not be held responsible for any Errors & Omissions made; nor for information on links and articles provided in good faith.
