A Key Step to a Standard Care Pathway for WM
The WMUK Active Monitoring Checklist
We’re pleased to publish the WMUK Active Monitoring Checklist for use by all WMers, as part of your journey living with Waldenstrom macroglobulinemia.
Designed by patients and clinicians, the Active Monitoring checklist will help you feel confident discussing essential elements of care with your clinical teams, and represents an important step in helping to create a standard care pathway for WM!
Made in collaboration with WMers
We want your feedback
In support of the checklist we have also discussed the experience of active monitoring with fellow WMers Andrea and Tim, who kindly agreed we could share their thoughts.
We have also developed a ‘how to’ guide patient resource, that follows the journey of a WM patient, aiming to allow newly diagnosed patients to understand what to expect of their consultations, while signposting them to resources that will help them better navigate clinician conversations. This we will be able to release in the coming days too.
As you begin using the checklist, we welcome your thoughts and feedback on how it is helping you manage your WM, so do get in touch.
Active Monitoring Patient Experience
Active Monitoring Patient Experience
Living with Waldenstrom's macroglobulinaemia (WM) and Active Monitoring - Andrea's story
Living well with Waldenstrom's macroglobulinaemia (WM) and Active Monitoring - Tim's story
What is active monitoring and why?
Active monitoring is when your healthcare team monitor your Waldenstrom's macroglobulinaemia, rather than treating it right away. You may hear it called ‘active surveillance’ or ‘watch and wait’.
At WMUK, our patients informed us they prefer the terminology 'Active Monitoring' over 'watch and wait' as it feels more of a positive and active process rather than waiting for something negative to happen. This is why throughout our website and literature, we will always aim to use the term Active Monitoring.
Coping with anxiety
Many people on active monitoring report feeling anxious. Some people don’t like the thought of delaying treatment, whereas other are worried about the possibility of starting treatment in the future. Discover the different ways you can cope with anxiety below.
When should I contact my healthcare team?
You don’t need to wait between appointments to speak to your healthcare professional team. If you have new symptoms or your symptoms are getting worse, don’t hesitate to contact your healthcare team. This could be a sign that your Waldenstrom's macroglobulinaemia needs treatment, and your doctor might want to see you sooner than planned.
You should have the contact details of your key worker – often your CNS – who you can email or call:
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If you have developed new symptoms, or your current symptoms have become worse
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If you have a question that you didn’t ask at your appointment
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If you have any concerns about your health at all
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If you are looking for more information about something related to your WM
