QOL - Advocacy 2014 Dec

CLLSA QUALITY OF LIFE SURVEY Results, observations and conclusions from the CLLSA survey into quality of life issues for people living with CLL

Many members took part in our survey this year to help us identify and evidence people's experiences of issues that negatively impact on their quality of life when living with CLL. Many members may find the grouped issues that others have shared very helpful and confirm they are not alone, it is hoped that next stage surveys will focus this work to help to direct care resources and support to help our members and the community. The reports in the links below provide emerging data and trends that will support CLLSA initiatives with partners in clinical research, the charity sector, industry and health providers to improve outcomes for people with CLL. We will keep you posted as these proceed.

CLLSA quality of life survey summary paper: 

Snapshot of CLLSA summary paper:

Data analysis, charts and recommendations: 


Advocacy and Becoming Involved. 

In this video from the CLLSA UK Patient Meeting in 
Cambridge, 21stJune, 2014, Patient  Advocate Andrew Schorr chairs a panel of UK 
patient advocates in a discussion of the important roles that advocacy can play in living with and raising awareness of less understood diseases such as CLL.

From small 'a' to large 'A', the panel traces the impact of advocacy from the personal to 
the political and the local to the global.

Read the full article and watch the video Here

Andrew Schorr and our panel of Advocates in action (photo)