Goal four: Be a voice for people affected by lymphoma to influence the decisions that affect them.
“I am delighted to be involved with the National non-Hodgkin lymphoma audit as a patient representative for Lymphoma Action. Activities like this make a real impact by helping health professionals, patients and carers influence the continuing drive for quality care and treatment.
Nearly 500 people, including 75 healthcare professionals, signed up to our new Let’s talk lymphoma campaign launched in September for Blood Cancer Awareness Month (BCAM) to raise awareness of lymphoma and its symptoms. Our messages about lymphoma symptoms reached over 65,000 people on social media alone.
We raised awareness about lymphoma by sharing people’s experiences on social media and in the press at both a regional and national level.
We made sure we amplified the voice of our community at the Lymphoma Coalition Global Summit, through meetings with the pharmaceutical industry, and by participating in various patient and sector forums, and responding to research requests and treatment trials.
We supported developments that would improve outcomes in treatment and care:
- By taking part in 14 Health Technology Assessment submissions including new innovations in lymphoma treatment such as CAR-T cell therapy and bispecific antibody treatments.
- Through our involvement with the National Non-Hodgkin Lymphoma Audit, which will use clinical data to improve treatment and care. We support the audit's patient panel, represent the patient voice and chair the clinical reference group meetings.
We worked collaboratively with other charities to represent the issues that matter to people affected by lymphoma:
- As part of One Cancer Voice, we launched a petition which received 76,559 signatures, calling for the UK Government to tackle the challenges in cancer care.
- We responded to the Government’s Call for Evidence to inform a Major Conditions Strategy as part of the Blood Cancer Alliance (BCA) and Cancer52.
