The Kidney Cancer Support Network (KCSN) is a patient-led network of kidney cancer patients, carers and family members affected by kidney cancer. Rose Woodward and Julia Black created the network to help kidney cancer patients come together to share their experiences and insights, and to help improve knowledge and awareness of kidney cancer.
We started the Kidney Cancer Support Network (KCSN) in 2006. Since then the KCSN has provided a safety net to many kidney cancer patients, their families and carers. Patients turn to us when they need good, clear, accurate, and most importantly, up-to-date information, or a friendly and experienced voice at the end of the phone.
We are both cancer patients, and we really do understand the heartache a diagnosis of cancer can bring; our aim is to bridge the gap between the medical team at your local hospital, and the day-by-day reality of living with a diagnosis of kidney cancer.
We provide one-to-one support via our telephone helpline, and we have an online resources forum, which contains up-to-date information, books and leaflets about kidney cancer, treatment options, patient stories, links to patient blogs, clinical trial updates, diet and lifestyle tips, and much of the information patients find invaluable. This is a place where patients know they will find informed and reliable answers to their questions. We also have a very active online Facebook group where patients, carers and close family members offer friendship and support to each other. It is a confidential page where everyone affected by kidney cancer can share their experiences to help others.
Over the years, we have acquired a huge amount of experience guiding patients through the nightmare process of gaining access to kidney cancer treatments, which are not routinely available via the NHS. We can talk you through the application and approval processes of the Cancer Drugs Fund, which can help you access NHS funding for the cancer treatments your doctor wants to prescribe.
This is a patient-led group, focused totally on patients; we simply want to provide the very best information and practical support to our fellow patients. Many patients and families have told us how much it meant to them to talk to someone who really understood how they felt. When we put patients in contact with each other, they tell us that joining our support network has changed their lives. Kidney cancer is a difficult disease to treat, but we believe by providing patients with somewhere to turn to, somewhere they can find answers, and somewhere they can find comfort and friendship, the journey may be a little easier. Our aim at the KCSN is to provide that place, and ensure no patient feels they have to face kidney cancer alone…. and this is why the network is the first port of call for many kidney cancer patients.
It is very important to us that the KCSN will always be patient owned, patient-centred, and led by the patients and carers it represents. We welcome everyone whose life has been touched by kidney cancer. Join us and share your experiences, raise awareness of kidney cancer, support research and help others. Together we really can make a real difference to the lives of our fellow patients. You can support the KCSN in many ways; either giving your time helping others with information on the online resources forum, or our busy confidential Facebook group. Perhaps you would like to fundraise to help us reach out to more patients, or make a donation to help with our costs. We will always be here to help.
Rose is a member of the National Cancer Research Institute (NCRI) Renal Cancer Studies Group and a founding member of the International Kidney Cancer Coalition (IKCC). Julia is the Project Manager for the IKCC and also works with the Rarer Cancers Foundation as a patient advocate.
Please get in touch if we can help in any way.
With warmest wishes from
Rose and Julia