Policy and influence

At Lymphoma Action, we work hard to ensure that the voices of people affected by lymphoma are heard loud and clear by those making the decisions that affect them and their families.

Changing how people live with lymphoma

One of the five goals outlined in our strategy is to be a voice for people affected by lymphoma to influence the decisions that affect them. Our work in this area is vital, as it leads to a range of important outcomes, including improved diagnosis, access to the right medicines at the right time, better standards of care and increased awareness of the signs and symptoms of the disease.

Working in collaboration

When it comes to our policy work, and advocating for our community, we know that working in collaboration with others will help us amplify our voice, widen our reach and increase our impact. We work with organisations including the Blood Cancer Alliance, Cancer 52, the Lymphoma Coalition, and One Cancer Voice to engage with policy makers on issues that affect our community.

We also work closely with our Medical Advisory Panel and our own Insights Panel, a group of people affected by lymphoma who share their views with us on a range of different subjects. 

Participation in health technology assessments (HTAs)

As a charity providing information and support to people with lymphoma for more than 35 years, we have a wealth of knowledge about its impact on those affected. For this reason, we are often asked by the National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Consortium (SMC) to contribute to their assessments of new lymphoma treatments. By sharing our expertise and bringing the patient voice into the process, we can ensure that decisions as to whether to fund new treatments on the NHS are made with all relevant information and perspectives included.

In 2023 we took part in 14 health technology assessments for NICE and the SMC, and our work in this area continues in 2024. This year so far we have seen:

Recent developments

  • We are supporting the National Cancer Audit Collaborating Centre’s new audit for non-Hodgkin lymphoma, which aims to identify variations in cancer services across England and Wales, ultimately hoping to reduce inequalities.
  • We supported the Lymphoma Coalition’s 2024 Global Patient Survey, where more than 1,200 people across the UK shared their experiences of lymphoma. Their responses will help inform how we shape our information and support services, as well as our policy and advocacy work.
  • We are working with One Cancer Voice, a group of more than 50 cancer charities, to prepare for the forthcoming general election. Together we ensure that cancer strategy stays top of the national agenda.

We are so grateful to everyone who supports our policy and influence work, whether that’s by providing their own unique viewpoint and perspective, sharing their experiences of lymphoma or spreading the word about the issues that affect our community.