Getting Involved

In the above video Dr. Follows discusses the current financial climate and the arrival of expensive long term novel therapies to treat CLL is causing much debate about what government can afford.  What can we do to make sure treatments that CLL patients need are available?  “What is cost effective use of NHS money to treat disease”? 

We CLL Patients will need to become more organised to pressure government together especially when there is so much competition for treatment of other conditions.Can patients band together so their needs are heard and understood? CLL Support Association and UK CLL Forum are bringing patients and clinicians together.

In the above video from the CLLSA UK Patient Meeting in Cambridge, 21st June, 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.

Kath Parson from OPAAL (Older People's Advocacy Alliance), adds her professional perspective to the experiences of CLL patient advocates Julia Kennedy and Tricia Gardom. Andrew, Julia and Tricia share their experiences in the transformation from patient to advocate and discuss what motivated them.

The panel concludes that advocacy works at a number of levels, beginning with the immense day to day benefits that sharing experiences with other patients in support groups brings to those living with CLL. From the positive impacts on the sense of isolation, fear and powerlessness that often accompanies diagnosis, grow more strategic advocacy campaigns such as lobbying for improved access to costly transformational therapies among the CLL community. Finally, the panel considers the potential benefits to the patient and clinical communities of collective individual experience on-line providing a global insight into living with CLL. All agreed that, whilst face to face support was important, staying connected online was an increasingly effective source of networked empowerment.

The panel strongly encouraged as many people living with CLL as possible to improve outcomes and raise awareness of the disease by getting involved in advocating for themselves and others

 

In the below video Julia's Story: From CLL Diagnosis To A Doctorate Study Of How CLL People Use The Internet.

Julia shares with us: her experience of CLL diagnosis, first questions, the general doctor's knowledge, how being selective when sourcing information is important, Julia discusses the importance of relationships and working together with her doctors, and following what's happening in the community. How this all lead to Julia's interest into how people use on-line communities and information resources to support and inform each other, that not all have access, are able or confident using the internet and there is a large older group of CLL patients we don't know much about.