I have been talking with Christopher Springmann who produces video clips for Patient Power, about how important it is for CLL sufferers to have a good understanding of their illness, not least because GPs and many other clinicians have little knowledge of its impacts and effects.
This was prompted by my own experience of being told some 5 years ago that I had psoriasis, but which more recently has turned out to be basal cell carcinoma. Chris likened the kind of inductive reasoning which led to me receiving an incorrect initial diagnosis, as the duck test: if it looks like a duck, swims like a duck and quacks like a duck, then it probably IS a duck. However that kind of reasoning doesn't always work, if the patient has a pre-existing condition which the GP knows little about. In my case specifically, my GP was unaware that CLL creates a greater than normal risk of skin cancer, and was therefore unable to allow for this in his reasoning.
As Chris puts it, "..no one is more interested in your life than you are; that turning over your fate to a busy GP who has got lots to worry about is not a good life-enhancing strategy; so, how do you convey your passion, knowledge and expertise about CLL to your doctor, plus get the treatment you need?
And how is that received?"
Chris has asked if there are any volunteers who would like to join a conversation on this, with a view, perhaps, to him putting together a clip on the subject for Patient Power.