Here at Leukaemia Care, we work with many other organisations to make sure the voice of blood cancer patients is represented where it needs to be. Here our Advocacy Officer, Charlotte, outlines how we work with one organisation, Cancer 52, to ensure that leukaemia and other blood cancers are on the agenda of policymakers.
What is Cancer52?
Cancer52 is a group of over 100 cancer charities that represent rare cancer types. Blood cancer charities are well represented in the group, with Leukaemia Care, Bloodwise, Myeloma UK, Lymphoma Action and MDS UK all members.
What is defined as a rare cancer?
Rare is defined as anything that is not one of the “big 4” cancers – breast, lung, bowel and prostate cancer. These cancers rightly get a lot of attention within the health system and policymakers; subsequently, they have also seen an increase in screening and treatment options. However, Cancer52 was started to give rare cancers more attention; these rare cancers account for more than half of all cancer deaths (52% of deaths at the time of the group forming, hence the name Cancer52, now 54% of deaths due to improvements in the big 4 survival rates).
What is the aim of the group?
The aim of Cancer52 is to “promote improved diagnosis, treatment and support for those affected by rare and less common cancers”, working on the principle that there are common challenges facing patients with rare cancers and the charities that represent them. Rare cancers represent over half of all deaths from cancer, but receive less funding and attention in policy, research and services than the big 4. Cancer52 brings together the voice of rare cancer charities into one unified voice, with the hope of having a larger impact on policymakers and improve outcomes for patients.
What do they do day-to-day to help patients?
There are 3 teams within Cancer52, which enables the group to work day to day. Each group is made up of the Chair, the CEO and others who also work for member charities, volunteering some of their time to help Cancer52. The leadership team, who oversee the group’s activities with the CEO and the Chair. The Policy and Public Affairs Steering Group is made up of people in policy within their own organisations; they contribute to the publication of statements, reports and consultation responses of Cancer52. The Access to Data Working Group was created in 2017 to improve the data collected and published on rare cancer types; data is essential to research and evidence-based policymaking.
All member charities of Cancer 52 meet regularly to discuss topical issues and often to hear from and debate with policymakers from organisations such as NHS England. They also issue joint responses to requests for information, jointly campaign on issues that affect patients and publish reports to respond to government policy.