Many of you have completed the Leukaemia Care patient experience survey over the past two years, Analysis of your replies clearly shows that CLL patients are left with little support from healthcare providers during ‘watch and wait’ and you are often not provided with information to help you understand your diagnosis.
I recall below some of the challenges in understanding my own conflicting counter-intuitive diagnosis, 9 years ago there was little reliable information available, now there is, but it is not always getting to people when they need it.
We want to change this, but to do so we need your help.
This April we will be launching our ‘watch and wait’ campaign. We are looking for CLL patients, carers and families to get involved, share your stories and help make improvements to the support and information that patients are receiving during ‘watch and wait’.
If you are interested in getting involved with this campaign, please contact Bethany Torr (Campaigns and Advocacy Officer at Leukaemia Care) by email at, Bethany.torr@leukaemiacare.org.uk or by phone on, 01905 755977.
Many thanks
Nick
CLL patient information booklet leukaemiacare.org.uk/resour...
Watch and wait booklet: leukaemiacare.org.uk/resour...
This time last year my FCR journey began ... what a year! We can do it!