Kath Parson: on panel at Chronic Lymphocytic Leukaemia Support Association Patient Meeting July 16
Last month Kath Parson from OPAAL (Older Peoples Advocacy Alliance) opaal3.cswebsites.org/ joined us in Cambridge to discuss advocacy with us all and the UK campaign to support older people living with Cancer. opaalcopa.org.uk/
Read about OPAAL and Kath's visit to the Chronic Lymphocytic Leukaemia Support Association (CLLSA) UK Patient Meeting in Cambridge, 20th and 21st June, 2014,
opaalcopa.org.uk/2014/07/16...
Kath Joined CLLSA members and advocates Julia Kennedy and Tricia Gardom and Andrew Schorr. Soon we will be releasing more video of interviews and talks from CLL Clinicians, patients and carers who have shared much information to aid us live well with CLL.
In the meantime if you have not had the opportunity yet, please watch the video and watch others with CLL share their experiences, how they have been helped and help others in turn.
"In this video 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 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.
Whilst it's quite a long video it is worth watching the whole thing (36 minutes)
"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."
You can find Kath's and Julia's earlier account of the meeting here opaalcopa.org.uk/2014/06/26...
Letter to my MP regarding funding of Ibrutinib
Extending HealthUnlocked on Patient Power
Zanubrutinib vs. Ibrutinib Patient Power Video by Dr. Jennifer Brown MD PHD
CLL Videos with CLL Expert at the Mayo Clinic... Dr. Tait Shanafelt
