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.

Sharon Kell attended a recent ABPI Patient Organisation Forum, where the main topics of discussion were Brexit and the Voluntary Pricing and Access Scheme (VPAS) for branded medicines.

An update on Brexit

The first presentation was about the potential impact of Brexit on the supply of branded medicines from Europe. David Simmons from the Office for Life Sciences (OLS) and Helen Lovell from the Department of Health and Social Care (DHSC) explained that the Government’s ambition is to secure a good deal, however they must continue to plan for all scenarios, including a no-deal Brexit.

There are 6 supply chain working groups (medicines, medical devices and clinical consumables, clinical trials, blood and tissues/organs, vaccines and non-clinical goods and services), which are working to ensure access to medicines and medical supplies. The Government’s priority is to ensure access to medicines in case of a no deal.

There could be issues transporting medicines across borders, and these could potentially last up to 6 months. The Government is working with the pharmaceutical industry to put in place alternative arrangements in the event there are delays at the border or if medical supplies are not suitable for stockpiling. These arrangements include re-routing of medicines and ensuring air freight arrangements and additional freight capacity, on which all medical products will be prioritised.

The Government’s message is that patients and pharmacists should not stockpile medicines themselves, since this would disrupt supplies. The Government and NHS England regularly deal with medical supply shortages, and these processes will be built upon in the case of a no-deal Brexit.

Arrangements will be communicated to the public, and the Government is working with patient organisations to develop communication channels.

ABPI members are working closely with the Government to make sure the processes and communication channels are in place in case of a no-deal and to ensure that arrangements outside of industry’s control are mitigated.

Voluntary Pricing and Access Scheme for Branded Medicines (VPAS)

Paul Catchpole from the ABPI gave an update on the new VPAS, which came into force this January to replace the Pharmaceutical Price Regulation Scheme (PPRS).

The VPAS is a 5 year voluntary agreement between DHSC, ABPI (on behalf of the pharmaceutical industry in the UK) and NHS England to manage Government spending on branded medicines, improve access and uptake of innovative medicines, and support innovation in the pharmaceutical industry.

The agreement will cap medicines growth at 2% for the next 5 years and industry will pay back anything over 2% to NHS England (estimated to be nearly £1 billion in 2019).

Pharmaceutical companies can choose whether to join the scheme, and 172 companies have joined representing 87% of branded medicines. The new scheme represents a commitment by government to help get medicines to patients quicker.

Key aspects of VPAS include:

  • The pharmaceutical payment mechanism allows 2% growth of the NHS medicines bill – anything over that is paid back by the pharmaceutical industry
  • First £5m of sales of a new drug are excluded from the pay back and pay back payments are tapered between £5-25m of sales
  • Small companies with less than £5m profit are excluded from the pay back
  • New medicines are excluded from the pay back for the first 36 months (back dated to January 2018)
  • Pharmaceutical companies still have the freedom to set their list price for new medicines.


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 (VPAS), which is an agreement between the Department of Health and the ABPI on getting the best value and most effective medicines into use by the NHS more quickly. The scheme replaces the old Pharmaceutical Price Regulation Scheme (PPRS), and sets the prices of branded medicines (not generic medicines) paid by the NHS. The new VPAS came into effect this month (January 2019).
Pharmaceutical companies can choose whether to join the scheme, and 172 companies have joined representing 87% of branded medicines. The new scheme represents a commitment by government to help get medicines to patients quicker.
Key aspects of VPAS include:
  • The pharmaceutical payment mechanism allows 2% growth of the NHS medicines bill – anything over that is paid back by the pharmaceutical industry
  • First £5m of sales of a new drug are excluded from the pay back and pay back payments are tapered between £5-25m of sales
  • Small companies with less than £5m profit are excluded from the pay back
  • New medicines are excluded from the pay back for the first 36 months (back dated to January 2018)
  • Pharmaceutical companies still have the freedom to set their list price for new medicines.
With this scheme, there is concern that large pharmaceutical companies won’t attempt to develop medicines for rare and less common indications with small patient numbers because of the potential impact of the new ‘pay to appraise’ fee rendering these medicines unprofitable.
David gave an update about how the NHS England Long Term Plan is going to play out, with particular reference to rare and less common cancers.
In reference to cancer services, the aim of the Long Term Plan is an extra 55,000 people each year surviving cancer for at least 5 years following their diagnosis, and three in four cancers (75%) diagnosed at stage 1 or 2. These aims are for all types of cancer. In 2016, 57% of kidney cancers were diagnosed in stage 1 and 2 (Public Health England figures). The Long Term Plan focuses on prevention of cancer (smoking, alcohol consumption, obesity), screening for cancer, and fast access to diagnostic tests (rapid diagnostic centres and 28-day faster diagnosis standard).
Cancer treatment is becoming more personalised through the use of genomics, and new types of therapy are being introduced (CAR-T, proton beam, ungraded LINACs). Follow-up care is becoming more holistic with improved access to CNSs due to enhancement of the workforce through recruitment and training of nursing staff and the Cancer Workforce Plan. There is more collaboration with academia and industry and an improvement in real world testing of innovation through the Cancer Alliances and rapid diagnostic centres to accelerate access and uptake of new treatments.
The four priorities for NHS England are:
  1. Implementation planning to turn commitments into reality
  2. Governance and structures to support delivery of the Long Term Plan
  3. Continued reinforcement of the leadership in Cancer Alliances
  4. Ensuring that the national team is set-up for delivery of the Long Term Plan.

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 support, including the NHS Long Term Plan and an update against the current cancer strategy, which concludes in 2020.

Salena Mulhere was lucky enough to be awarded a bursary for attending the conference by Cancer52. Here is Salena’s report:

I felt really privileged to be asked to attend the Britain Against Cancer All Party Parliamentary Group on Cancer conference on behalf of KCSN. Despite the dearth of politicians after mid-morning due to Brexit, the charities, patients, clinicians and scientists present were still able to have a productive day sharing experiences, challenges and developments and learning more about some key work and campaigns going forward. It was very helpful to get an understanding of the inequalities that continue in relation to access to treatment and care and outcomes across the different cancer types in the UK, and the shared issues patients face.

The speaker stage, where a number of organisations were able to make a brief 10 minute presentation, was particularly good at sharing the key highlights of important issues that we need to continue to work with other charities and clinicians to address where we can, and lobby politicians to address if need be. The Institute of Cancer Research (ICR) presented their report “From patent to patient” which gave a comprehensive overview of how many cancer drugs have been licensed over the last 16 years and how long that process takes. Only 10 new treatments were licensed for kidney cancer from 2010-2016; however, it was sobering to learn that for five other types of cancer there were no new drug treatments licensed at all! It was also enlightening to learn that it is taking longer to get drugs authorised: between 2000 and 2008 it took an average of 12.7 years to take a patented discovery through development, trials and licensing to final NICE approval. Between 2009-2016 this time increased to 14.1 years! Delays in getting drugs through clinical trials and licensed are a large part of the problem, and we need to continue doing all we can to influence and encourage faster and more effective clinical trial development, recruitment, execution and reporting, and to also continue our work in increasing patient knowledge of clinical trials.

The ICR research also found that the highly innovative drugs were less likely to receive NICE appraisal for use in the NHS than less innovative drugs (those that work in a similar way to those already available). Worryingly, a large number of drugs authorised as a result of clinical trials weren’t appraised by NICE at all. NHS patients are therefore missing out on innovative treatments completely, and the waiting time for access to drugs proven to be effective is literally years, which is just not acceptable.

Attending the conference reaffirmed my belief that patients and their charities and representatives such as KCSN need to be communicating at the highest level to keep informing the political decisions that continue to impact on the care and treatment available to them. It gave me even more insight into where some of the strategic challenges are, and highlighted some more evidence and allies for us to utilise in our ongoing mission of improving care and outcomes for kidney cancer patients.

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 NHS. In addition to our work with the National Institute for Health and Care Excellence (NICE) on health technology appraisals for new medicines, membership of the ACMC enables us to influence policy decisions that affect access to cancer medicines.

The ACMC meets quarterly to discuss issues affecting access to cancer medicines. The last meeting was held on 5th December. During this meeting the group was joined by two external speakers from NHS England and NICE:

  • Brad Groves from NHS England spoke about the routes to routine commissioning within NHS England. The cost of drugs continues to increase due to the complexity of the new technologies coming to market, e.g. CAR-T therapies. NHS England needs to balance the cost:effectiveness and affordability of all new drugs, while meeting the expectations of both industry and patients. During the lifecycle of a drug, there are a number of drivers that influence price, such as commercial arrangements, expanded indications, competition/substitutions and generics/biosimilars. NHS England need to ensure affordability by negotiating drug prices, patient access schemes, discounts and managed access schemes, such as the Cancer Drugs Fund (CDF). Brad summarised the current routes to routine commissioning as being health technology appraisal (HTA), highly specialised technology (HST) appraisals, managed access agreements and the CDF. He also talked briefly about the new Pharmaceutical Price Regulation Scheme (PPRS), which is currently under consultation and due to come into effect in 2019.


See Brad’s presentation here: Commercial access for new medicines

  • Jenna Dilkes from NICE gave an overview of the new technical engagement step in the new NICE single technology appraisal process. This step was introduced into appraisals for all new drugs to help expedite the overall process. A technical report is prepared by the technology team at NICE with advice from experts. This report is sent to all stakeholders and the pharma company for comment. Stakeholders are given 28 days to review the technical report, and a teleconference (including experts) can be held during this period for clarification of any issues. The technical report is included in the appraisal committee meeting. The aim is to resolve any technical issues prior to the appraisal committee meeting so as to avoid subsequent meetings. Patient groups can be called upon as experts for creation of the technical report and the teleconference. The technical report will be published on the NICE website when finalised. The first drugs to go through this process will be durvalumab for lung cancer in January 2019.


See Jenna’s presentation here: NICE new technology appraisal process – technical engagement

Other issues discussed at the meeting were:

  • Brexit – marketing authorisations will become the remit of the Medicines and Healthcare products Regulatory Agency (MHRA) in the UK, but there is a question mark over the capacity of the MHRA to do this. This might result in delays to  licensing and product line extensions. Future customs arrangements and goods regulations remain unclear and could potentially have a significant impact on the future supply and price of medicines.
  • Pharmaceutical Price Regulation Scheme (PPRS) – timelines for the PPRS consultation have slipped. The new agreement was published today, but hadn’t been seen. The QALY threshold for recommendation of drugs for NHS use will remain unchanged, although the methodology will be reviewed early 2019. Combination treatments will be addressed in the new agreement.
  • Chemotherapy algorithms – are being revised to address inconsistency of prescribing across the country. RCC and myeloma drugs are the first to go through the process.
  • Northern Ireland and CDF issues –  the Northern Ireland Affairs Committee is currently holding an inquiry covering the issue of access to cancer medicines. There are plans to ensure equity of access to drugs with NHS England. A consensus statement for implementation has been produced and an agreement is being drawn-up. As an interim arrangement, £2.5m has been set aside for a CDF in Northern Ireland.


Members provided a summary of their access to medicines priorities. KCSN reported on our involvement in the successful first-line ipilimumab/nivolumab appeal following a negative European Medicines Agency (EMA) opinion.

Please let us know if you would like to contribute to this group by sharing any issues you have experienced or are experiencing with respect to accessing the treatment you need for your kidney cancer (team@kcsn.org.uk).

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 new NHS England Long Term Plan, 2020-2030.

Cancer survival has never been higher than it is today (1-year survival rates have risen from 61% to 72% for all cancers since 2000), but there is still more to do. NHS England needs to close the survival gap on the rest of the world. For some cancers (pancreas, lung, ovarian, brain, stomach) survival rates remain amongst the lowest in the world.

The Prime Minister announced at the beginning of October that NHS England needed “A step change in how we diagnose cancer.” The aim is to diagnose 75% of ALL cancers at an early stage (stage 1 and 2) and see 55,000 more people survive 5 years or more by 2028. As part of this initiative, NHS England has:

  • Reduced the age for bowel cancer screening from 60 to 50
  • Set-up rapid diagnostic centres for cancer across the country
  • Invested £130m in new scanning technology.


NHS England will ensure people will live longer after a cancer diagnosis by:

  • Diagnosing cancer earlier and faster
  • Ensuring every patient has optimal, personalised treatment, care and effective follow-up
  • Enabling research and innovation to ensure smarter and kinder diagnosis and treatment methods are developed and quickly adopted within the NHS.


These initiative will be enabled by accelerating what is known to work well, reducing health inequalities and variations, fostering collaboration across the NHS, academia and life sciences industry, and personalising cancer care.

For optimal treatment and care, the challenge is the immense speed of technological advance. For example, this year there are 70 new oncology drugs for more than 20 indications reaching the market, and this is set to rise to 110 by 2020.

Update on achievements so far

Access to care

The NHS is treating more cancer patients than ever before. This year (2018/19) has seen a step change in the number of cancer referrals across all cancer types, particularly urology (increase of 26% compared to last year). The NHS has responded with a significant growth in activity, for example the 62-day treatments have increased 12.5% in the same period. However, the NHS want to see more people with symptoms coming forward and being referred.

Early and faster diagnosis

To address early diagnosis, ten multidisciplinary diagnostic ‘one stop shops’ have been established across the country for rapid assessment and diagnosis of cancer, the faecal immunochemical test (FIT) is being rolled-out for bowel cancer screening this autumn, and a screening programme offering low dose lung CT scans is being launched.

Faster diagnosis is being addressed through the use of a new faster diagnosis standard (28 days to diagnosis), a new tracking system for cancer to enable data collection, and timed pathways for lung, colorectal and prostate cancer.

Treatment and care

To improve treatment and care of cancer patients, £130m has been used to modernise radiotherapy services and has funded 61 replacement LINAC machines and upgraded another 12 in 40 Trusts within NHS England.

The new Cancer Drugs Fund was rolled out in July 2016, and has funded access to the latest and most promising new treatments for 15,700 patients.

Since October 2018, NHS England is the first health service in the world to routinely offer genomic medicine, with hospital across England linked to specialist centres that read, interpret and analyse patient DNA.

The 19 Cancer Alliances across England are being funded to deliver personalised care and support and are developing a new world-leading quality of life metric. In total, over £72m was released to the Cancer Alliances in 2017/2018.

You can see Cally Palmer’s presentation here:

National Cancer Programme

Publication of the new Long Term Plan for NHS England is expected in December 2018, after which NHS staff, patients, and the public will have the opportunity to help their local NHS organisations implement the plan during the first half of next year. Kidney Cancer Support Network have already been consulted on what we would like to see in the Long Term Plan, the closing date for feedback being 30th September 2018. You can read our consultation document here:

KCSN consultation on the NHS long term plan

Cancer52 also submitted joint recommendations for the NHS England Long Term Plan, which was developed from feedback from 33 charities or patient groups representing people with rare and less common cancers. Their briefing document is a result of their wide-ranging consultation, which included a patient survey, a member charity survey, workshops and stakeholder interviews. You can read their briefing document here:

Getting a better deal for people with rare and less common cancers: the next ten years


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 a patients’ perspectives on the disease and its treatment. Jon and his wife, Sarah, had previously made a video about his kidney cancer experience. This video and Jon’s presentation were shared simultaneously with around 20,000 BMS employees located in BMS offices around the world. Jon is pictured with (l-r) Davide Piras (BMS Head of EMAC region), Mary Beth Harler (BMS, Head of Innovative Medicines Development), Amber Shotton (psoriasis patient), Veronique Walsh (BMS General Manger UK/IE), Jon, Giovanni Caforio (CEO of BMS Worldwide Global), Sharon and Julia (KCSN).

KCSN partners with the pharmaceutical industry, research institutes, hospitals and clinics to improve understanding of the kidney cancer patient journey and to highlight the various issues faced by patients during their care and treatment. Our goal is that this collaborative approach between patients and professionals will eventually lead to a more patient-centred approach to the care and treatment pathway for kidney cancer, so that patients become more involved in shared decisions about their treatment options. Please contact Rose or Julia for support, information or a friendly person to chat to on our confidential helpline 01209 890326, or join our closed FaceBook group to meet and chat with other kidney cancer patients and carers.

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 actively and productively engage with NICE.

PIN is independent from NICE and the pharmaceutical industry. They use their combined knowledge, experience and direct contact with patients from a wide range of conditions to ensure the patient voice is represented within NICE, and that NICE puts patients, carers, and patient groups at the centre of its work.

They work alongside NICE’s Public Involvement Programme to provide a forum to enable patient groups to engage with NICE and to shape various aspects of NICE’s work.

Their last meeting was held on Monday 17th September, during which the following items were discussed:

  1. NICE shared decision-making guidelines – Dr Monica Desai, Consultant Public Health Adviser for NICE introduced the guideline consultation for NICE shared decision-making guidelines. The pre-scoping workshop for these guidelines is taking place on 3rd December and the first consultation period is 18 January – 28 February 2019. The guidance will be published in April 2021. Dr Desai wanted feedback from PIN members regarding; gaps in the shared decision-making system; what are the unanswered questions; who should support the process; timing of shared decision-making in the treatment pathway; the elements that need to be considered; how to measure shared decision-making; and the tools needed to support shared decision-making (decision aids, training, education and skills etc.)
  2. NHS long-term plan – Gill Leng, Deputy Chief Executive and HS & SC Director for NICE spoke about NICE’s involvement in the development of the NHS long-term plan. NHS England are developing a long-term plan to cover the next 10 years. Arms-length bodies, such as NICE, are submitting draft plans for work streams, such as research, innovation and technologies (especially digital), clinical standards, prevention, cancer, quality improvement and treatment pathways. PIN members were asked for their input to these work streams. The long-term plan will be published in November 2018
  3. New NICE technology appraisal process, published April 2018. Jenna Dilkes, Programme Manager – Planning and Operations, Technology Appraisals gave an update on the new technology appraisal process. The biggest change to the technology appraisal process is the requirement for a technical report and technical engagement with the manufacturer. The technical report is developed by NICE with information from the manufacturer and the evidence review group (ERG). It addresses scientific uncertainty and includes opinions, not recommendations. The technical report focuses the committee’s time on the important issues for decision-making and enables NICE to engage with the manufacturer to resolve technical problems. Patient expert statements are used to help develop the technical report
  4. Accelerated Access Collaborative (AAC) – Chris Feinmann, Programme Manager gave an overview of the work of the AAC. The Accelerated Access Review (AAR) was published in 2016 and identified various hurdles to access to new technology, such as; slow access to new products; multiple barriers to approval and adoption; industry not cognisant of NHS priorities; lack of coordination/strategic planning between different organisations; and lack of accessible data regarding uptake and use of new technology. The AAC was established in response to the AAR, and aligns all the national bodies (e.g., NICE, NHS England, Department of Health, NIHR, MHRA, NHS Improvement, etc. including patients, clinicians and researchers) around accelerating access. The Accelerated Access Pathway (AAP) includes horizon scanning, selection of best products, and adoption support for all types of innovation. The AAC filters out the best 5-10 products in terms of health gains and financial savings for the NHS to enter the AAP. These products are given transformative designation, enabling additional support and guidance to reach the market quickly. The AAC helps with evidence generation for clinical/cost effectiveness and regulatory hurdles, along with support for adoption and diffusion of the innovation within the NHS and metrics/data to track NHS use. The AAC would like patient groups to help filter 5-10 products for transformative designation.


PIN meetings are held quarterly in the NICE London office. The next meeting is scheduled for 10 December 2018. If you would like to contribute to the work of PIN, or would like to be more involved, please email us.

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 the Access to Cancer Medicines Coalition (ACMC).

The ACMC brings together 24 cancer charities and patient representative organisations. Its aim is to ensure that cancer patients have timely access to the most clinically effective medicines for their condition on the NHS. Using combined knowledge, experience and contact with people affected by cancer, they ensure that the patient voice is strongly heard in both public conversations and official decision-making relating to access to cancer medicines. The work of the coalition focuses on England, and covers the assessment of new and repurposed medicines, their availability on the NHS and funding arrangements, and the impact this has on patients.

The ACMC meets quarterly to discuss issues affecting access to cancer medicines. The last meeting was held on 4th September, and the following issues were discussed:

  1. Treatment criteria – as a result of restrictions on availability of some CDF drugs for blood cancers, NICE are formalising treatment criteria and incorporating these into the NICE technology appraisal process to improve transparency. Patient groups will be able to dispute the interpretation of clinical trial results where they feel access to medicines is being inappropriately restricted
  2. Off-patent, repurposed medicines – the Association of Medical Research Charities (AMRC) has produced a report Facilitating adoption of off-patent, repurposed medicines into NHS clinical practice The group are collating information on repurposed drugs. This will help inform discussions about the licensing route and commissioning of these drugs by the NHS and build the case for financial incentives for repurposing off-patent drugs
  3. Northern Ireland and CDF issues –  the Northern Ireland Affairs Committee is currently holding an inquiry covering the issue of access to cancer medicines. A number of ACMC members have provided written evidence and have been invited to provide oral evidence. The group discussed the option of working with groups in Northern Ireland and producing a joint letter
  4. Genomic Medicine Service – the National Genomic Test Directory is being launched in October 2018 and will specify the genomic tests commissioned by NHS England. Genomic testing will be delivered through a national network of Genomic Laboratory Hubs (and their sub-contractors) working to an agreed set of standards. The final draft of the directory for cancer can now be accessed online here
  5. Pharmaceutical Price Regulation Scheme (PPRS) – timelines for the PPRS consultation have slipped. Patient groups need to negotiate for a simplified, streamlined process to improve access, pricing and uptake arrangements for cost effective medicines. The most clinically and cost effective medicines need to be delivered and adopted faster with the aim of improving patient outcomes
  6. Brexit – key issues, such as future customs arrangements and goods regulations, remain unclear and it was noted these will have a potentially significant impact on the future supply and price of medicines and products being investigated in clinical trials (investigational medical products). The UK Medicines and Healthcare products Regulatory Agency (MHRA) will unilaterally take on post-Brexit marketing authorisation responsibilities.

Members provided a summary of their access to medicines priorities. KCSN reported on our involvement as stakeholders in the positive first-line cabozantinib NICE appraisal, the Scottish Medicines Consortium (SMC) Patient and Clinician Engagement (PACE) meeting for first-line cabozantinib (decision pending), and the first-line ipilimumab/nivolumab appeal following a negative European Medicines Agency (EMA) opinion.

Please let us know if you would like to contribute to this group by sharing any issues you have experienced or are experiencing with respect to accessing the treatment you need for your kidney cancer (team@kcsn.org.uk).

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 cancer community in the UK; we are very proud of their achievement and so lucky to have found two such wonderful people who are willing to volunteer their time to speak up for all of us in this very important forum. Rose Woodward previously held this position, so the charity is delighted to continue its role in promoting kidney cancer research and voicing a patient perspective.


Salena is the widow of Tony, who died of a sarcomatoid version of renal cell carcinoma (RCC), and Alison is a stage 4 patient of clear cell RCC; each bring different experiences and skills to the role.





Alison said, “I am excited to be moving to the next level of involvement in research and hope to be able to offer a patient view in discussions. The number of clinical studies for RCC is less than other cancers so I want to understand how we can engage with clinicians and patients to drive up the amount of research and provide patients with options for trials.”

The NCRI CSGs have been in existence for more than 10 years, and are a central part of the UK’s cancer research infrastructure. The CSGs bring together clinicians, scientists, statisticians and lay representatives to coordinate development of a strategic portfolio of clinical trials within their field. All CSGs interact with clinical research networks, funders and researchers to develop studies aimed at improving outcomes for patients. The CSGs, sitting within the NCRI Clinical Research Groups (CRG) Team, provide the primary, but not sole, route through which new ideas for clinical trials are developed. There are currently 18 NCRI CSGs, including 14 cancer site-specific groups and four cross cutting groups. The CSGs are funded by a consortium of NCRI partners.

We are also sad to see the departure of Rose Woodward from the Bladder and Renal CSG and the surgical trials subgroup; Rose has been a patient representative on this CSG for the past 10 years, and is the longest-standing patient representative across all NCRI CSGs! A wonderful achievement! Rose has been influential in a number of projects run by the NCRI, and has championed the need for the patient voice in the design and development of kidney cancer clinical trials. Rose has been a passionate advocate for the kidney cancer community within the NCRI, and has gained the respect and admiration of many of the clinicians, scientists and researchers that she has worked alongside over the past 10 years. I am sure you will join me in thanking Rose for her unwavering enthusiasm, energy and commitment to helping further kidney cancer research in this country, and to wish her all the best for the future. THANK YOU Rose!


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 has worked with PHE’s National Cancer Registration and Analysis Service (NCRAS) to produce two films. The first is a short (8 minute) montage film featuring many of the leaders in cancer data giving their views on the importance of access to data. It covers Cancer52’s presence alongside the team from use MY data at NCRAS’s Cancer Services, Data and Outcomes Conference 2018 in Manchester at the end of June. This film explains why data is critical.

The second longer film is to ensure that all the learnings from the Cancer52 workshop, Getting data out for rare and less common cancers, organised with NCRAS and Brainstrust, could be shared with rare and less common cancer patient groups and charities, not just those who could attend the conference. This film helps charity members of Cancer52 understand the process for (literally) getting more rare or less common cancer data out of PHE.

Sharon Kell is working with NCRAS on a project to access clinical data for clear cell renal cell carcinoma (RCC) and rare subtypes of RCC. We will keep you informed of the progress of this project.