Below is a list of the organisations and groups that KCSN is currently working together with on various projects, or from whom we get help, advice and information that we can pass on to our KCSN community. Members of KCSN are often called upon to represent the views and opinions of kidney cancer patients at health technology appraisals for new treatments by the National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Consortium (SMC).
52 per cent (recent statistics show an increase to 54%) of UK cancer deaths are from the less common cancers. Despite this, the less common cancers remain severely under represented and under-funded across all areas, including policy, services and research. Cancer52 is an alliance of 90 organisations working to address this inequality and improve outcomes for patients with these highly challenging diseases.
KCSN is working with Cancer52 to improve access to NHS England cancer data.
The two main objectives of the Renal Cancer Research Fund Scotland (RCRF) are to raise awareness of kidney cancer and help advance kidney cancer treatment. This is achieved by inviting kidney cancer experts to events, and giving presentations local organisations. Funds are raised throughout the year at events such as the annual Green Ribbon Ball, Mad Hatters tea party, Prestwick Proms, coffee mornings, fund runs, fashion shows, and Christmas Fayre. To date around£100,000 has been raised, which has been used to help buy a cryotherapy machine for the Beatson/Gartnavel Hospital in Glasgow; sponsor a renal cancer specialist research assistant based at Glasgow University; help fund ongoing biomarker research by the Edinburgh Urology Cancer Group based at Edinburgh University; and help fund the startup of a new website for the KCSN.
The Paul Popham Fund was set-up and is run by close friends and family of the late and very much-respected Paul ‘Wally’ Popham. Everyone involved in The Fund has been inspired in some way by Paul Popham’s unrelenting optimism in the face of renal disease. The aim of The Paul Popham Fund, Renal Support Wales is to improve the quality of life of Renal Patients in Wales. Achieved by working with Units and Centres that treat and specialise in Renal Care in Wales to purchase items that will directly benefit the Renal Patient’s quality of life. This aim will also be achieved by working with and developing initiatives that will help improve the Renal Patient’s health, wellbeing and welfare.
IKCC is an independent and democratic network of patient support and advocacy organisations established with the mission of improving the quality of life of patients and their families living with kidney cancer. IKCC provides information, support and assistance to national kidney cancer organisations. All organisations are welcome to participate. KCSN was one of the founding members of the IKCC and Rose Woodward has just been re-elected for a second term as a volunteer member of the IKCC board.
Independent Cancer Patients’ Voice (ICPV)
Independent Cancer Patients’ Voice (ICPV) is a patient advocate group independent of established UK cancer charities and aware of the value of medical research to both public health and to the national economy. Their aim is to improve existing treatments for every cancer patient and develop new treatments by bringing the patients’ voice into clinical research by; (1) educating, supporting and mentoring patients so that they can have an equal voice with clinicians and researchers and (2) bringing the patients’ voice to clinicians and researchers by being patient advocates in clinical research. Both Rose Woodward and Julia Black are members of the ICPV.
The Cancer Campaigning Group (CCG) is a coalition of national cancer-related charities representing service providers, research, advocacy and campaigning groups for cancer patients and their families. Founded in 2002, it enables cancer charities to speak and campaign with a single unified voice.
The aim of the CCG is to campaign for improved cancer policy and services in the areas of prevention; care and treatment; patient involvement and choice; and research.
The National Cancer Research Institute is a partnership of UK cancer research funders. Our Partners have funded more than £5.5bn of cancer research since 2002, and working together ensures that these funds are used to best effect. The NCRI Clinical Studies Groups (CSGs) have been in existence for more than ten years, and are a central part of the UK’s cancer research infrastructure. There are 19 CSGs that bring together clinicians, scientists, statisticians and lay representatives to coordinate development of a strategic portfolio of trials within their field. All CSGs interact with clinical research networks, funders and researchers to develop studies aimed at improving outcomes for patients.
NICE’s role is to improve outcomes for people using the NHS and other public health and social care services by:
- Producing evidence based guidance and advice for health, public health and social care practitioners.
- Developing quality standards and performance metrics for those providing and commissioning health, public health and social care services.
- Providing a range of informational services for commissioners, practitioners and managers across the spectrum of health and social care.
The purpose of the Scottish Medicines Consortium (SMC) is to accept for use those newly licensed medicines that clearly represent good value for money to NHS Scotland. SMC analyses information supplied by the medicine manufacturer on the health benefits of the medicine and justification of its price. As the NHS has limited resources, SMC works to make sure that those medicines which represent good value for money are accepted for routine use as quickly as possible so that they can benefit patients. The Consortium is made up of lead clinicians, pharmacists and health economists together with representatives of health boards, the pharmaceutical industry and the public.
Fight Bladder Cancer is the only UK-based bladder cancer charity founded and run by bladder cancer survivors and their families, so they know exactly what you’re going through. They explain the medical jargon, give you the facts and figures, share tips and tell stories. They support all people affected by bladder cancer, help to raise awareness, support medical research and campaign to affect policy at the highest levels to bring about change in bladder cancer treatment. Their aim is to achieve better outcomes and quality of life for all those affected.
Macmillan provide support and help you take back some control in your life. From help with money worries and advice about work, to someone who’ll listen if you just want to talk. Right from the moment you’re diagnosed, through your treatment and beyond, Macmillan are a source of support, giving you the energy and inspiration to help you feel more like yourself. Macmillan’s ambition is to reach and improve the lives of everyone living with cancer and to inspire millions of others to do the same.