WMUK
Active Monitoring Campaign
WMUK’s Active Monitoring Campaign to improve the care for those suffering from Waldenstrom’s Macroglobulinaemia (WM) while on ‘active monitoring’.
Story
Help us raise £15,000 to improve the care for those suffering from Waldenstrom’s Macroglobulinaemia (WM) while on ‘active monitoring’.
Campaign Summary
Active monitoring (AM) is a stage of WM care that has the greatest effect on the largest number of WM patients. It is a hugely uncertain and deeply anxious time for patients and the care they receive differs vastly from hospital to hospital across the UK. We need your help to raise £15,000 so we can help begin the process of standardising the care for WMers while on active monitoring and if we do so we will be able to create better health outcomes for those living with WM.
Why are we focusing on Active Monitoring (AM)?
As so many WMers are put on ‘active monitoring’ when they are either first diagnosed or after initial treatment with WM, then we knew that this stage of the disease has the greatest impact on the largest number of patients. It is a hugely uncertain and deeply anxious time, sometimes more eloquently referred to as ‘watch and worry!’
"Because AM is the first stage in your WM journey, you need a lot of support and reassurance in the beginning. You are coming to terms with the fact that you have a disease which is going to change your life and have lots of questions.” WMer
This worry is understandably made worse in the lead up to the periodic consultations with clinicians to check on the status of the disease and, despite many WMers and their loved ones preparing for these meetings, they are understandably hugely stressful occasions making it difficult to ask the right, focused questions about their care. As WM patient Andrea put it…
"Initially you are just like a rabbit in the headlights…you don’t know quite what to ask or how to ask it…"
A lack of understanding
The worry and stress WMers face is exacerbated by the fact that there is currently no standard care for WM patients, particularly for those on AM, meaning that the care and advice which they receive from healthcare professionals (HCPs) is often inconsistent.
Research completed within other rare diseases has shown the positive impact having a standard care pathway can have on the outcomes of patients.
"It would have been good to have better support from the Clinical Nurse at my local hospital, but again, because it was new, I didn’t know what I could ask for and expect and also didn’t know how to address the situation when I wasn’t getting what I needed.” WMer
What is the AM Checklist?
In response to this overall inequality a project was carried out in 2023 to see how best to tackle it.
Over a period of six weeks, we brought together a group of patients and WM specialists to investigate the overall experience of active monitoring. The ability for both patients and clinicians to have effective conversations when discussing patient care was highlighted as a key issue.
A follow up group of almost 200 patients and over 40 healthcare practitioners, poured all their knowledge and experience of AM into a series of key questions WMers can ask in their consultations with clinicians: this is the AM Checklist.
What will the AM Checklist achieve?
If we can help WMers ask the right questions of their clinicians, this will guide better care that they receive, helping clinicians with their understanding to so they can address the concerns and needs patients have. Ultimately, it will simply create better care results for patients and be a key step for standardising the care WMers have. It’s a huge opportunity!
“Because you have greater knowledge, you feel in greater control when you are on AM.” Andrea
We need your help!
While the AM Checklist is a huge achievement for the WM community, there is a massive amount of work we need to do to get it in the hands of more patients and in-front of more healthcare professionals.
This is not an easy undertaking and we need £15,000 to support the rollout and trials study so we can begin making the change in the healthcare journey WMers need.
What’s needed to undertake the rollout and trial of the AM Checklist?
The money raised will fund a six-month WMUK rollout and trial, implementing the Active Monitoring Checklist into four different hospital centres (1 in Scotland, 1 in Wales and 2 in England), working with a group of patients on active monitoring. A study will then be conducted to see if the checklist is effective, both in terms of improving the overall experience of active monitoring as well as creating better results for patients and increasing healthcare practitioner understanding.