About the Active Monitoring Checklist Project
Regular discussions on WMUK forums often talk about the vastly different experiences WMers have when on active monitoring for Waldenstrom's macroglobulinaemia and just how stressful the whole process is. In discussing the issues with the clinical advisory board, they too highlighted the issue that healthcare professionals (HCPs) have drastically different levels of experience, with access to expert support hugely variable across the UK. This means any sense of a standard care pathway, which we know is so beneficial for patients, is simply not happening.
To begin tackling this, a project team was put together in early 2023 that brought together HCPs and patients to try and address the experience of active monitoring. Over a six week period, the views of almost 200 patients and nearly 50 HCPs were received, resulting in the development of an ‘active monitoring checklist’ for use by patients in consultations during active monitoring, to help guide conversations, inform clinicians and help begin to standardise the care pathway for WMers on active monitoring.
Check out our Active Monitoring for WM page, or go straight to our Active Monitoring Checklist.