When is a duck not a duck? Can you help with the development of a Patient Power video?

[David39]

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.

[HAIRBEAR_UK Founder Admin]

Hi ALL

Thank you David for developing this with Christopher Springmann and Patient Power. Well done.

The video that your earlier discussion with Christopher prompted is a great example of a Patient Power video clip.,

Here is the video about David's discussion

youtube.com/watch?v=YOSKqtQ...(Not working as expected?)

patientpower.info/video/an-...

I am sure many may relate and have their own experiences of how their relationships have developed with their GP's . Learning about the disease helped my own transition at diagnosis this helped bridge a perceived gap in the beginning between what I had learnt and what I believed my GP didn't understood. However as my relationship with my GP has developed with time I have begun to understand myself more and about living with the disease and my GP works with me and learns a little more about the disease with me. It was a mutual process for us, my GP encourages me to develop my knowledge and the support community and always takes time to discuss the whole picture with me. let's not forget a GP may not be in contact with many CLL patients, it is not surprising they may not be fully aware of CLL issues.

However does your CLL consultant always seem interested in issues that may not be haematological and could be CLL related? GPs have to consider much.

Miy GP always says now she treats me as two people, and considers me with CLL and without when I have issues. But I did kiss a few frogs first.

David you can put me down as interested to share If people feel unable to post to the thread but wish to share, personal message David with your feedback. A brief poll will also be posted shortly that will aid further input.

Nick

[littleriver]

I am up for it. Last weeks conference was great! I suggets we all try and attend at least one .

[jangreen]

Hi I changed my GP because of his initial reaction ( or non action) to diagnosis. So yes I would be interested.