By Kat Tucker,
WMUK
Earlier this spring, WMUK was proud to launch the Active Monitoring Checklist—a resource to help both patients and healthcare professionals navigate conversations around Active Monitoring (AM) and improve care during this period of time for people with WM. (Editor’s note: AM is also called “watch-and-wait.”)
Alongside the Checklist, the charity also launched a series of videos for people on AM, showing what consultations on AM should look like, as well as patients sharing their own experiences of care whilst on AM.
The work was the product of a need to improve the patient AM experience. WM patients reported feeling stressed and anxious during this time, with many patients and family members often feeling confused as to why they weren’t going on treatment.
As one commenter on social media said: “When a doctor says you have cancer, the first thing you want is treatment to cure it. It’s difficult for a patient to accept that watchful waiting (AM) can be the correct treatment for this very rare, incurable cancer.”
Together with a working group of clinicians, patients, and other stakeholders, we gathered the opinions of almost 200 patients and clinicians, whose responses to our survey produced a strong consensus on how AM should be communicated and explained. These results fed into the AM Checklist.
The videos supporting the campaign have also helped people on AM feel heard and understood. One viewer of a patient story video said: “It is quite reassuring to hear about others with the same condition.”
A series of educational videos for healthcare professionals was also rolled out, with Dr. Roger Owen and clinical nurse specialist Charlotte Bloodworth giving guidance and advice on navigating what can be difficult conversations and consultations with patients.
Patients are already reporting back how useful the Checklist has been when talking with their clinicians. It is the first step toward creating a standard of care pathway for people with WM, ensuring that no matter where they are treated in the UK, they receive the same expert care. WMUK is raising money to help drive this work, and you can contribute here.
You can find the AM Checklist and our other video resources here.
