To inform a NICE appraisal Myeloma UK worked with Blood Cancer UK, Leukaemia Care and Anthony Nolan to survey myeloma and other blood cancer patients about their experiences of COVID-19 and COVID-19 treatment.
In February 2022 Myeloma UK launched a new Peer Buddy service to connect and empower myeloma patients and their loved ones.
Feedback from service users demonstrates the significant improvement support from someone with experience of the same condition has on wellbeing.
From March until May 2022 Myeloma UK ran a campaign highlighting the importance of a timely myeloma diagnosis.
Read about the report on the impact of delayed diagnosis and the diagnosis-focused research programme launched during the campaign.
We are pleased to report that University College London Hospital, Leicester Royal Infirmary, Basingstoke and North Hampshire Hospital, Dorset County Hospital and Salisbury District Hospital have all received Myeloma UK’s CSEP award. Each hospital has demonstrated excellent clinical practice, with some notable highlights.
Our Clinical Practice Services Team continued their focus on raising awareness of myeloma in primary care. This included launching a guide for GPs and highlighting the importance of early diagnosis at national conferences.
The Patient Advocacy team are researching how delays in diagnosing myeloma affect patients’ quality of life. The research will inform a policy report to make NHS and Government decision makers aware of the link between delayed diagnosis and quality of life.
Myeloma UK funded a research project to find out if an app, The ChoiceApp©, could help UK patients with their treatment decisions. As part of the project, the app was shared with small groups of myeloma patients and haematologists to assess whether this approach could benefit UK myeloma patients.
In June, the first results from the OPTIMUM/MUK nine clinical trial were presented at international conferences.
The trial is the first to use state-of-the-art diagnostics and genetic profiling to screen for patients with high-risk myeloma.
These results show that treatment with a five-drug induction treatment (Dara-CVRd) and stem cell transplant is effective and well tolerated in ultra-high risk myeloma patient