All Member Meeting 21st April 2015 Jane Lyons, CEO, Cancer52

Parliamentary Event Follow Up Qs John Baron MP Qs To ask the Secretary of State for Health, if he will ensure that the forthcoming cancer strategy will include specific actions to improve early diagnosis in those with rare and less common cancers To ask the Secretary of State for Health, what steps his Department is taking to increase levels of research into rare and less common cancers. Nic Dakin MP Qs To ask the Secretary of State for Health, what plans he has to ensure that there is adequate future funding of drugs for people with rare and less common cancers. To ask the Secretary of State for Health, what steps he is taking to ensure that rare and less common cancers are represented as part of the 100,000 Genomes Project.

Cancer Strategy Workshop 18th February 2015 Organised and held at short notice at suggestion of member charity 14 members attended and provided feedback and input for CM to take to the Task Force 14 members (some who attended the workshop) also submitted their input to a survey Outputs included summary sheet of meeting notes (available on request) Informed Cacner52 submission to Taskforce (available)

Cancer52 Patient Engagement Event 3rd March 2015

Cancer52 Patient Engagement Event 3rd March 2015 Attended by 35 people in total including National Clinical Director Sean Duffy Mix of patients, charity representatives, NCIN, NHS England, Quality Health (authors of National Cancer Patient Experience Survey) New data produced for engagement event Photographs and recordings to be used to write and scope Cancer52 patient experience report Key outputs produce patient engagement event output report by the autumn (September) hold a CNS workshop by end of year (November)  

Rare and less common cancers – key finding from NCPES patients with rare and less common cancers report a less positive experience on virtually every question than those with one of the Big 4 (breast, colorectal/lower gastrointestinal, lung and prostate) Reviewed all 70 questions within the NCPES 2014 and split the data into three – all cancers, ‘big 4’ and ‘rare and less common cancers 20 questions that identify some of the bigger gaps in findings presented at engagement event

Cancer 52/NCIN joint project on rare and less common cancers With thanks to NCIN Report to be launched for NCIN conference Belfast 8th – 10th June 2015

Cancer Drug Fund part of a charity coalition working to evolve the CDF (Cancer Drug Fund Charity Coalition) Remit The CDF Charity Coalition has been established to discuss mutual concerns around access to cancer treatments and to feed in (via three representatives –Sarah Woolnough/Alison Cook, Andrew Wilson and Baroness Delyth Morgan) to the NHS England Cancer Drugs Fund Working Party. Objectives Discuss areas of mutual interest around access to cancer drugs and plan joint activity in this area. Contribute, via the representatives mentioned above, to the work of NHS England in this area.

Key dates All member meeting All stakeholder meeting 14th July 21st October Sean Duffy is keynote speaker

Cancer52 is supported by its members; and companies including Novartis Oncology, BMS, Amgen, Celgene, Pfizer & Merck Serono Thank you!