Cancer52 All Stakeholder Event – Early Diagnosis

Sharon Kell attended Cancer52’s annual stakeholder meeting, the focus of which was early diagnosis of rare and less common cancers. David Fitzgerald, Director of Policy and Strategy, NHS Cancer gave an update on the Long Term Plan for cancer services, in particular the early diagnosis standard of 75% of all cancers being diagnosed at stage 1 […]

Do You C Us?

Rare and less common cancers account for nearly half of new cancer diagnoses. They affect people of all ages, genders, ethnicities and locations. However, the nature of these conditions means that people can often face a range of issues, such as recognising symptoms, obtaining a diagnosis, receiving the most suitable treatment or getting appropriate levels […]

The Kidney Cancer Patient Charter

Being diagnosed with kidney cancer is a daunting and stressful time. Sometimes, it comes after months of investigations and appointments with healthcare professionals. For a newly diagnosed patient, there is rightly an expectation that they will be able to receive the best possible care, as well as the support that they need, throughout their subsequent […]

NIHR Patient Recruitment Centres for Clinical Trials

On 12 November 2020, the National Institute for Health Research (NIHR) launched five Patient Recruitment Centres (PRCs) around the country. Dr van’t Hoff, CEO of the NIHR PRCs opened the discussion about how these will work to increase patient recruitment into late phase commercial studies in England. These PRCs will strengthen UK clinical research and […]

ABPI Patient Organisation Forum

Sharon Kell rang in to this virtual meeting to discuss the means of collaborating with pharmaceutical companies for grants and funding to enable charities and patient organisations to continue their important patient support work going forward into 2021. This meeting was organised by the Association of British Pharmaceutical Industry (ABPI) Patient Organisation Forum. Here is […]

Cancer52: CEO Meeting

Sharon Kell attended the Cancer52 Chief Executive Officer’s meeting in place of Rose Woodward earlier this week. Here is what was discussed: Kruger report: Charity reaction to Kruger report: ‘It is critical that government now acts’ There is a working group looking into the Kruger report in detail to develop a Cancer52 plan to ensure that […]

Cancer52: CEO meeting

Sharon Kell took Rose Woodward’s place at the Cancer52 Chief Executive Officer (CEO) meeting earlier this month, where the following was discussed: CEO survey: 18 organisations took part and 44% were small/medium organisations Most people used social media helplines (300-1m) Demand during the COVID-19 pandemic peaked at 60% in some organisations – demand rose in most organisations […]

ABPI Patient Organisation Forum

Sharon Kell rang in to this interesting virtual meeting of key personnel from parliament, Association of British Pharmaceutical Induistry (ABPI) National Institute for health and Care Excellence (NICE) and patient organisations about the future of medicines evaluation: The panellists: Lord Bethell of Romford, Parliamentary Under Secretary of State, Department of Health and Social Care Professor Gillian […]

Access to Cancer Medicines Coalition

The first Access to Cancer Medicines (ACMC) meeting since December last year took place last week! As you can appreciate, not a lot has happened during the COPVID-19 pandemic: European Union – we leave the EU on 31 December 2020 and on 1 January 2021 the Medicines and Healthcare Products Regulatory Agency (MHRA) in the […]

Cancer52: Access to data for rare and less common cancers

Sharon Kell attending this meeting with Cancer52 members to discuss the progress being made to access data for rare and less common cancers. During the meeting additional cancer deaths caused by the effects of the COVID-19 pandemic were summarised, along with the sources of accurate information from Public health England (PHE) or the government. A […]

ABPI Patient Organisation Forum: NICE methods and processes review

A survey about the effect of COVID-19 on kidney cancer patients

Towards the end of June, some of you will have taken part in a survey organised by a charity called Cancer52. Thank you to those who took part to help us understand how the COVID-19 pandemic has affected your care and treatment during this unprecedented time. Because Cancer52 members represent rare and less common cancers, […]

NOTION: iN-home sampling Of cyTokines in ImmunOtherapy patieNts

NOTION is a research study to develop an early detection system that aims to help future patients with the side effects of immunology treatments. Information from medical records will be used for the research study and for future research. Many patients who receive immunotherapy experience side effects. If these can be detected earlier, clinicians can […]

ABPI Patient Organisation Forum: Patient centricity

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. […]

Overcoming Inequalities Report

Kidney cancer affects a large and growing number of patients. This report from Bristol-Myers Squibb (BMS) sets out a number of areas where focus from policymakers is required to ensure kidney cancer patients receive the high-quality care that they deserve, no matter where they are being treated. If the UK is to improve patient outcomes […]

One Cancer Voice manifesto

We need to make sure people with cancer aren’t just surviving longer, but living well too. With 28 other charities, we’re releasing a manifesto calling on the next Government to improve prevention, diagnosis, treatment and care. There’s a long way to go to provide people with the cancer treatment and emotional support they deserve. With […]

Cancer52 All Members Meeting – NHS Long Term Plan and NICE Methods and Processes

The Cancer52 All Members Meeting took place on Wednesday 16th October with updates from David Fitzgerald, National Cancer Programme Director at NHS England about the NHS Long Term Plan, and Lizzie Thomas and Heidi Livingstone about the NICE reviews of methods and processes. Sharon Kell represented KCSN at the meeting: Jane Lyons, CEO from Cancer52 […]

National Voices Workshop

Steve Pointon attended a workshop last week organised by National Voices on behalf of the National Institute for Health Research (NIHR) to investigate what is important to people of working age when suffering from multiple long-term conditions. There are a number of things already known, such as over a quarter of people in England live […]

Experimental Cancer Medicine Demystified, Cambridge

On Friday 27 September 2019, Sharon Kell attended the annual Experimental Cancer Medicine Demystified event held at Cancer Research UK Cambridge Institute on the University of Cambridge Addenbrooke’s campus. This is the second year that this event has taken place, and it was open to researchers, nurses, health professionals, cancer patients and patient representatives. The […]

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

At a recent meeting of the Access to Cancer Medicines Coalition (ACMC) on 24th June, the group was joined by two external speakers from the National Institute for Health and Care Excellence (NICE) and NHS England: Heidi Livingstone, Senior Public Involvement Advisor from NICE, spoke about the forthcoming changes to NICE’s processes and methods to […]

World Kidney Cancer Day at Basildon University Hospital

On World Kidney Cancer Day last Thursday 20th June, Lydia Kigozi and Sharon Kell were delighted to be invited to attend a coffee and cake afternoon at Basildon University Hospital organised by Mr Ramachandran Ravi, consultant urologist, in aid of World Kidney Cancer Day. Around 40 patients, carers, family members and friends came along to […]