The results from the survey are helping us to identify more ways that we can help make a difference to the experience of the 4,000 people living with Waldenstrom's macroglobulinaemia (WM) in the UK.
One large area in the diagnosis expereince of WM patients was being given information specifically about their disease. The survey was completed by 137 patients living in the UK. Of these, 50% received take-home information specific to the disease upon diagnosis and 33% received generic information, either about blood cancer or about cancer as a whole. Worryingly, 15% didn’t receive any take-home information at all. The remaining 2% couldn’t remember what information they were given.
Although the majority of patients were given an explanation about Waldenstrom’s macroglobulinaemia by their medical team upon diagnosis, only a third (34%) said that they fully understood the explanation, with many reporting that they were in too much shock to really understand much more than they had cancer. This means that there is a large proportion of people reporting that they didn't understand their diagnosis and weren't given the expert-led information to help them learn more at home.
Like many of the respondents to the survey, we think information to take home is really important. At home, people can take time to read through information with family and friends, and have time and space to learn and process their diagnosis.
WMUK is working with healthcare professionals to ensure everyone with WM gets the information and support they need from the moment they’re diagnosed. This month, we’re sending out hundreds of leaflets and posters to our network of haematology CNSs and healthcare professionals, to give out to WM patients. The message is simple: you’re not alone.
The leaflets and posters point people affected by WM in the direction of the WMUK and the WM community, where they can access expert information and personal support services, tailored specifically to Waldenstrom’s macroglobulinaemia.
We are also investing in our website, in line with our pledge, to expand and improve our range of WM-specific information whilst making it easier to navigate.
Our information is backed up by interviews and conversations through our webinar series and podcast, where people can watch and listen to experts, patients and family members talk about various subject related to living with WM. We’re committed to continuing to expand our range of information to ensure it is as accessible as possible.
Thank you so everyone who participating in the survey, and helped us to understand the diagnosis experience for people living with WM.
If you have any suggestions about information that might help – whether for newly diagnosed people or people who have been living with the disease for years – please let us know by emailing firstname.lastname@example.org.