Rose Woodward – Founder and Patient Advocate
As co-founder of the Kidney Cancer Support Network, Rose has worked tirelessly for many years to ensure kidney cancer patients in the UK have access to high quality care and the best possible treatment options. A long-term patient/survivor of kidney cancer herself, Rose is now an experienced patient advocate sharing her knowledge, experience and providing a strong patient voice at a national and international level on behalf of the kidney cancer community. Rose is a committed advocate on behalf of kidney cancer patients who wish to be involved directly in decision-making relating to their own care and believes passionately that people directly affected by cancer, should be part of the design and provision of cancer services within the NHS.
Together with Julia Black and Clive Stone MBE, Rose led the “Fight for Life” campaign which provided practical and bespoke support to several hundred kidney cancer patients refused access to clinically effective kidney cancer treatments. The campaign was ultimately successful when N I C E agreed to review the criteria for End of Life cancer drugs and consequently in 2009, the first targeted therapies for kidney cancer were made available in the UK.
The principle of patients sharing experiences, exchanging information and supporting each other is why the KCSN is the biggest and most active support network for people affected by kidney cancer in the UK.
Rose is a founding member and volunteer Board Director of the International Kidney Cancer Coalition (IKCC). Rose retired in 2018 from her record-breaking 10 years voluntary service as an expert patient representative on the National Cancer Research Institute Bladder and Renal Cancer (NCRI) Clinical Studies Group.
Julia Black – Head of Patient Support
An experienced patient advocate with over 10 years experience working on behalf of rare cancer patients. Julia began campaigning for fairer access to cancer drugs and treatments as the postcode lottery of access to cancer drugs first began to unfold. Since then Julia has worked on over 250 individual funding applications for patients desperate to access the treatments their clinicians wish to prescribe, the vast majority of which have been on behalf of kidney cancer patients.
In 2006 whilst helping Keith a kidney cancer patient receive NHS funding for sorafenib she met many kidney cancer patients all desperate to access clinically effective cancer drugs via the NHS, her path crossed with Rose Woodward and between them they founded the KCSN, the largest UK support network for people touched by kidney cancer.
Julia is also project lead for the International Kidney Cancer Coalition (IKCC); a global collaboration of national patient groups supporting those affected by kidney cancer. She was also Head of Patient Support for the Rarer Cancers Foundation from 2011 until 2016.
Diagnosed herself with breast cancer in 2005 and 2008, Julia has undergone surgery and chemotherapy and understands how it feels to face a diagnosis of cancer. A passionate patient advocate who firmly believes patients have a stronger voice when working together and who should be involved in all aspects of their own care.
Sharon Deveson Kell BSc PhD MBA – Head of Medical Relations
Sharon is a clinical scientist with over 15 years’ experience working in the pharmaceutical industry, during which time she held a variety of roles in drug development, marketing, and senior management. She has been the global project manager on a number of clinical trials involving biologics, and she has a good understanding of the drug development process.
During her pharmaceutical career, she was responsible for writing clinical study protocols and reports, patient information leaflets, and scientific papers. She was involved with writing and implementing training programmes for clinical researchers and project managers, and organising and running investigator meetings for clinical trial programmes. In her current role as a medical writer she has written numerous factsheets and booklets for cancer patients, and organised cancer patient meetings. She has also part written and project managed an online renal cancer course for nurses.
Sharon has a first class honours degree in physiology and biochemistry from Reading University, and a doctorate in reproductive endocrinology from the University of Surrey. She achieved her MBA from the Open University in May 2000.
Karen McNee – Head of Patient Advocacy
Karen is an experienced patient advocate, having worked extensively for patients in Scotland as well as the United Kingdom. Karen has worked to improve access to new medicines for patients in Scotland. In the seven years that she has worked with kidney cancer patients, she has been instrumental in the approval of four new medicines by the Scottish Medicines Consortium (SMC), including the first immunotherapy medicine for kidney cancer, nivolumab.
Karen has worked with government and pharmaceutical companies to ensure that the kidney cancer patient voice is heard to ensure better outcomes for them and their families. In the seven years that she has worked for patients she has always believed that the patient should be at the centre of everything. This has been her guiding thought when considering patient support requirements, running and organising patient days, and setting up roundtables including patients, government ministers and clinicians. As a result of this, services that she identified as being required were then put in place, including a buddy scheme, counselling service and a lunch club. Karen has worked closely with clinicians to ensure that a complete holistic approach is given to the patient’s care.
In the past, Karen has represented the patient perspective at an international level ensuring that their perspective was heard.
She also works hard in the area of fundraising to help ensure that the funds are available to continue delivering identified services that will help patients and their families.
Steve Pointon – Community Development Officer
Steve was a very experienced senior manager in the security industry, managing over 200 field-based employees and contracts worth over £1m. Steve enjoyed his career; however, it left very little family time.
In August 2016, Steve was diagnosed with kidney cancer after a scan for something else. He had a nephrectomy in September 2016 and went back to work a month or so later. In January 2018 he discovered the cancer had spread to his abdominal lymph nodes and he was referred to the Christie Hospital in Manchester for further treatment. His prognosis was around 4 years if the treatment didn’t work. Fortunately, he was eligible for interleukin-2 (IL-2), and despite it being a tough treatment, it was a success and he has been in remission since September 2018.
He found KCSN after his second diagnosis and the help he received from Rose and members of the group was invaluable. It gave him a new-found desire to help people and he undertook two foundation courses in becoming a counsellor. The second diagnosis also made him realise how family time was more important than a career that meant spending long hours at work.
He is now completing a BSc Hons degree in person-centred counselling and he looks forward to helping people when qualified.
Steve has been an administrator of the KCSN Facebook group since January 2019. He joined the charity in a more formal role to help build communities outside the Facebook group and forge better links with hospital departments.
Volunteers and supporters
At KCSN everyone plays a part; we work together in a variety of ways to offer help and support. The KCSN charity couldn’t achieve half of what we do without the kindness and commitment of our many volunteers, and the generous donations and fundraising endeavours of our fellow kidney cancer patients, carers, families and friends. Thank you!