ABPI Patient Organisation Forum: Brexit and VPAS

KCSN is a member of the Association of the British Pharmaceutical Industry (ABPI) Patient Organisation Forum. The ABPI aims to encourage the collaboration of the pharmaceutical industry and charities and to ensure that the patient is at the heart of their work to deliver medicines that have the most impact on people’s health and wellbeing. […]

Cancer52 All Members Meeting – NHS Long Term Plan and the Voluntary Pricing and Access Scheme (VPAS)

Representing KCSN, Sharon Kell went along to the Cancer52 All Members Meeting on 23rd January to hear presentations from Dr Paul Catchpole, Value and Access Director at the Association of British Pharmaceutical Industry (ABPI), and David Fitzgerald, National Cancer Programme Director at NHS England. Paul gave an explanation of the new Voluntary Pricing and Access Scheme […]

Britain Against Cancer 2018

This year celebrated the 20th anniversary of the annual Britain Against Cancer Conference, which was hosted by the All Party Parliamentary Group on Cancer (APPGC). This year’s conference focused on living well with cancer, including access to the best treatments and support to meet the needs of patients. The conference also reflected on future priorities for improving cancer care and […]

Access to Cancer Medicines Coalition: Routes to access within NHS England

KCSN believe in enabling patient access to the most innovative and effective medicines for their cancer. As such, we are members of the Access to Cancer Medicines Coalition (ACMC), a coalition of 24 cancer charities and patient groups working to ensure cancer patients have timely access to the most clinically effective medicines for their condition on the […]

Cally Palmer, National Cancer Director, speaks at the Cancer52 stakeholder briefing

Image courtesy of Jam Pond Photography @JamPond The annual Cancer52 stakeholder briefing took place on 17th October, and Sharon Kell represented Kidney Cancer Support Network at the meeting. The keynote speaker was Cally Palmer, National Cancer Director, who gave an update on the accomplishments of the current cancer strategy and what to expect in the […]

KCSN patient spoke to 20,000 Bristol-Myers Squibb (BMS) employees during BMS’s Global Patient Week

Jon Birchall, Julia Black and Sharon Kell recently visited Bristol-Myers Squibb (BMS), one of the leading pharmaceutical companies pioneering new immunotherapy treatments to fight cancer. During his visit, Jon took part in BMS’s Global Patient Week where he was able to share his kidney cancer journey, from diagnosis to treatment, to help employees better understand […]

Patients Involved in NICE (PIN)

To compliment our work with the National Institute for Health and Care Excellence (NICE) on health technology appraisals to improve access to new and innovative treatments for kidney cancer, KCSN are members of Patients Involved in NICE (PIN). PIN is a coalition of over 80 patient organisations who work together to enable patient groups to […]

KCSN working with the Access to Cancer Medicines Coalition

KCSN work hard to ensure patients are able to access the treatments they need for their kidney cancer. In addition to our work with the National Institute for Health and Care Excellence (NICE) on health technology appraisals for new medicines (you can read more on our Access to Treatments page), KCSN are also members of […]

KCSN members representing the kidney cancer community at the NCRI

Many congratulations to Alison Fielding and Salena Mulhere, who are the new patient representatives (consumers) on the Bladder and Renal Clinical Studies Group (CSG) at the National Cancer Research Institute (NCRI), which manages research into bladder and renal cancers. Both had to go through a gruelling selection process to be chosen to represent the kidney […]

Access to Data Working Group for rare and less common cancers

Because we believe strongly in the importance of access to reliable data for kidney cancer, KCSN is a member of the Cancer52 Access to Data Working Group. This group meets quarterly to investigate means of ensuring public access to clinical data held by Public Health England (PHE) for rare and less common cancers. The group […]

KCSN at the NICE Annual Conference

The NICE Annual Conference was held at the end of last month in Manchester. This is a good opportunity to catch-up on what NICE has been up to over the past past year. The conference showcases the latest developments in clinical improvement, health technologies and patient-centred quality care, providing insight into the innovations shaping healthcare, […]

European International Kidney Cancer Symposium 2018 – A Patient View

Alison Fielding was delighted to be invited to the 13th European International Kidney Cancer Symposium 2018 in Prague on 27-28th April, where she talked about kidney cancer services from a patient’s perspective. You can take a look at Alison’s presentation here: A Patient View Here is Alison’s report on the meeting: After 4 years of living with […]

KCSN attends South Reading Cancer Support Network to raise awareness of kidney cancer

Last Monday, Gina Squires and Sharon Deveson Kell were delighted to be invited to attend a networking event organised by the South Reading Cancer Support Network. The meeting was chaired by Dr Kajal Patel, the Cancer GP Lead for Berkshire West Clinical Commissioning Group (CCG). Dr Patel had identified that the South Reading region was continually […]

KCSN showcases the Patient Champion Programme at the IKCC 2018 conference

KCSN were delighted to be invited to this year’s International Kidney Cancer Coalition (IKCC) conference held in Mexico City on 12th-14th April. Around 50 patient advocates from all corners of the globe made their way to Mexico to come together to learn from one another, share best practices, and to build partnerships to help support kidney […]

Early Detection 2018 Annual Symposium

The third Early Detection 2018 Annual Symposium took place at Cancer Research UK Cambridge Institute on the Cambridge Biomedical Campus in January this year. The symposium was attended by Tim Marple, a member of the KCSN, who was also a panel member for the question and answer session. Read Tim’s kidney cancer patient story here. […]

KCSN patient visit to Eisai European Headquarters in Hertfordhsire

Mick Collins and Sharon Kell recently visited Eisai, one of the leading pharmaceutical companies pioneering new treatments to fight kidney cancer. During their visit they took part in a staff Lunch and Learn meeting. Sharon gave an introduction to the work of the Kidney Cancer Support Network and the support services that we offer to kidney […]

A patient’s experience of Patient and Public Involvement (PPI) in clinical trial design

In this article, Alison Fielding describes her experience of Patient and Public Involvement (PPI) as a patient expert for the design of a kidney cancer clinical trial, which has recently started recruiting patients. Following her experience, she is now the patient representative on the Trial Management Group for the NAXIVA trial.  When it comes to […]

Britain Against Cancer 2017

This was the 19th annual Britain Against Cancer Conference hosted by the All Party Parliamentary Group on Cancer (APPGC). The conference focused on the progress made against the recommendations set out in the England cancer strategy as we near the halfway stage of implementation. The findings and recommendations of the APPGC inquiry into the progress of the cancer strategy were also explored and […]

A cancer patient’s riposte to viral Facebook posts to “Show you care about cancer”

Every so often, we see viral Facebook posts encouraging us to share a particular Facebook post to ‘Show you care about cancer’. They normally include the language of chain mails and a vague threat that if you don’t you are somehow heartless and only their ‘real friends’ will do it. Well, the kidney cancer community […]

KCSN patient visit to Bristol-Myers Squibb

Jud Hamblin recently visited Bristol-Myers Squibb, one of the leading pharmaceutical companies pioneering new immunotherapy treatments to fight cancer.  During his visit he took part in a staff meeting where he was able to share his kidney cancer journey, from diagnosis to treatment, to help employees better understand a patients’ perspectives on the disease and […]

Cancer’s hidden price tag – revealing the costs behind the illness

In this report, Macmillan highlights the hidden costs and unexpected financial consequences of a cancer diagnosis. Macmillan talk to people every day about their money worries and know that cancer brings with it the risk of financial hardship. So they commissioned UK-wide research to shed new light on the scale and scope of this problem. […]

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