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Why Not Wales? The Welsh Cancer Drugs Fund Campaign

In 2006 my mother, Pamela Northcott was refused a life extending new drug for kidney cancer by her local health board in Denbighshire North Wales. I began a campaign to ensure she got access to the treatment and, on her request fought for other patients who also had been refused vital life extending treatment. I spent every night researching how the commissioning process in Wales worked and over 9 months found those who should know how it worked didn’t; chaotic structure; complete lack of transparency and understanding by LHB’s; oncologists being chastised for even applying for funding for newer treatments. In short it was a mess and offered no hope to welsh patients needing new cancer treatments.

On May 10th 2007 Mum became the first person in Wales to win NHS funding for Nexavar for Kidney Cancer though tragically it was too late for her and she died on August 12 2007 feeling abandoned by the country she loved. I promised her I could continue the work I started and in the first year after her death won funding for over 150 kidney cancer patients in England and Wales.

In 2008 after a meeting with Edwina Hart the Welsh Health Minister she agreed that all patients in Wales would receive Sutent and Nexavar – I thought the battle had been won and continued my work in England. I expanded my work to all cancer types and was kept busy with english patients. I won treatment for a further 70 english patients and during the years of 2007-2012 was buoyed by the better processes in PCT ‘s thanks to the Richards Review in 2009 and now the Cancer Drugs Fund which has made a real difference to english patients. It isn’t perfect but it’s real progress and most importantly demonstrates that the government understand how important new treatments are to clinicians and patients alike to extend life.

This progress has served to highlight how far behind the Welsh are in the battle for better treatments for cancer patients. After the kidney cancer treatment approval the joy was to be short lived. The Welsh Administration backed down only 9 months later and the situation today is dire. In the past year I have been inundated with requests for help by welsh cancer patients refused vital treatments. One oncologist in Wales has disclosed that 75% of his Exceptional Case Applications have been refused with a total of 59 cancer patients affected. We have no idea to the true number of welsh cancer patients affected due to the lack of a coherent process with the welsh system. In confidence many welsh oncologists have told me there is little point in putting in an Exceptional Case Application as they know it will be refused. We know that only 31 exceptional case applications were approved in Wales in 2010/11 and that there are 24 treatments accessible to english patients through the CDF that are not available in Wales. The Welsh Administration spent £588 million on free prescriptions last year. It would cost approximately £3 million to offer the same access to new treatments as English patients.

Case Studies:
Katie’s father in law Geoff contacted me before christmas in a desperate state. She was 29 and was found to have advanced bowel cancer in November 2011. She was due to get married to Ioan in February and the family were in deep shock. Cardiff and Vale LHB refused her funding for Avastin and the family asked me to be her advocate. We are now in contact daily and they have affected me deeply. Katie is enough incentive for me fight for a Welsh Cancer Drugs Fund. They fundraised the money for Avastin and it shrunk her tumours by 50% – allowing her to be well enough to go to South Africa in February to get married to Ioan. She is now ready for a new radiotherapy treatment called Sirspheres – on friday Cardiff and Vale refused her this treatment also. I have already begun preparing her case to Appeal this decision.

More than ever each individual cancer patient needs a friend - an experienced navigator in a sea of bureaucracy and chaos. Kate Spall has tirelessly served hundreds of patients to help them achieve optimal care within the NHS. Increasingly the attitude of those making funding decisions within the NHS is passive. If you don't ask you don't get. And how you ask has assumed immense importance to the chances of success. Patient advocacy has never been more important than in 2010. By her work Kate is enhancing not just the quality of care for those she helps directly but also the lives of many other cancer patients.

Professor Karol Sikora

Clinical Advisor

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