James Whale, founder of James Whale Fund and Chairman of Kidney Cancer UK
Nick Turkentine co-founder of James Whale Fund and CEO of Kidney Cancer UK
We seek to reduce the harm caused by kidney cancer by increasing knowledge and awareness, providing patient support and information and by funding research into the causes, prevention and treatment of the disease. We started out as the James Whale Fund for Kidney Cancer which was set up in 2006 by the broadcaster, James Whale, following his experience of dealing with the disease in 2000 resulting in him having a kidney removed.
Amazed at the lack of information, support and awareness for patients, James set up the charity in 2006 with CEO Nick Turkentine. In late 2015 Kidney Cancer UK merged with us and we changed our name on February 7 2016 to Kidney Cancer UK.
Thanks to research and the advanced knowledge of the disease, ten-year survival rates for people diagnosed with kidney cancer in England and Wales have almost doubled in the last forty years. However, the fight is far from over as kidney cancer is now the eighth most common cancer in the UK, with around 28 people being diagnosed each day. And sadly, in the past 10 years, kidney cancer rates in the UK have increased by almost a third.
As the UK’s leading specialist kidney cancer charity our focus is on reducing the harm caused by kidney cancer for today’s patients and their families and also by reducing its prevalence and impact for future generations. To achieve this, we work closely with patients, nurses and doctors to identify patients’ needs and help ensure they are being met by delivering various professional and educational programmes. We also deliver and support awareness programmes that are aimed at changing at-risk lifestyle factors and encouraging an earlier diagnosis, which makes a significant difference on survival rates
Kidney Cancer UK was originally formed in January 2000 by patients, Keith Taylor and Dick Williams to fill a much need support for those diagnosed with Kidney Cancer. The Charity was driven by those with Kidney Cancer and in those early years of 2000 life expectancy was not good. Keith and Dick were both late referrals to Kidney Cancer and sadly both lost their brave fight to the disease and are no longer with us.
The merging of the two charities sees us unite under the clear and concise mantle of Kidney Cancer UK, creating the UK’s leading specialist kidney cancer charity that works tirelessly for patients, carers and their families. Our mission is to reduce the harm caused by kidney cancer through knowledge and awareness, providing patient information and by supporting research into the causes, prevention and treatment of the disease.
Thanks to your donations we have had a productive year achieving our aims. Your support means that we were able to provide numerous patients with patient support grants to help them obtain invaluable equipment to make their lives easier and further to the results of a patient survey, we are planning the delivery of our Patients and Professional Project. This is a highly-demanded educational programme, to provide recently-qualified GPs and hospital registrars with extra insight into kidney cancer. We also had a really constructive year spreading the word about kidney cancer. We supported the NHS’s Be Clear on Cancer’s, Blood in Pee campaign, which is an important campaign aimed at catching the disease earlier, by producing a highly-informative video. Featuring Professor Thomas Powles, a Trustee and Head of Solid Tumour Research at Barts Cancer Institute, the video covers symptoms, treatments and support available, as well as underlining the importance of seeking medical opinion if blood is spotted in the urine. We held several awareness days across the UK, with the intention of increasing people’s awareness about how a significant proportion of kidney cancers could be reduced by changing lifestyle factors.
Talking to other people who are affected by kidney cancer can really make a difference to patients, their families and friends. With this in mind, we:
Kidney Cancer UK represents the needs of kidney cancer patients in the political arena by lobbying government to;
The Charity attends the meetings of the All Party Parliamentary Group on Cancer at Westminster to keep abreast of government directives for the care and management of cancer patients in the UK. In addition, the Fund lobbies Westminster, the Welsh Assembly and the Scottish Parliament for access to drugs and to increase awareness of the disease.
We are involved with all technology appraisals for new kidney cancer drugs conducted by the National Institute for Health and Clinical Excellence (NICE). The Fund provides expert input to the technology appraisals through the provision of expert patient witnesses on the technology appraisal committees and through appeals against NICE reimbursement decisions for kidney cancer drugs on the NHS.
Together with other cancer charities, we are uniting behind the common goal of effective and efficient commissioning of cancer drugs and will be working closely with NHS England, the Department of Health, the National Institute for Health and Care Excellence (Nice), and the Association of the British Pharmaceutical Industry (ABPI) to develop a better process for commissioning cancer drugs.