A Sense of Despair
Right now I am sitting here feeling a sense of despair. Not about myself, I’m upbeat about that, but about the system that we as patients suffer from.
My sense of despair comes from a lot of what I read in these pages, and it is not the individual stories of tremendously brave and resourceful people.
No it comes from what they are not being told, the information they are not getting. Yet there has been a huge amount of effort put in at all levels from government, cancer prganisations, medical groups and consumer groups to correct this. The Cancer Councils do a great job - they publish all these resources for patients; they collect and hand on resources from other organizations; they run the cancer helpine 13 11 02; they manage all those wonderful volunteers who agree to counsel newly diagnosed people through Cancer Connect; and they maintain this site. There are the medical organizations like the Clinical Oncology Society of Australia, there are the specific patient groups like the Prostate Cancer Foundation, or the Breast Cancer Network, all providing superb information and resources to help those affected by this dreadful disease.
Yet it is obvious from so many of your stories that no-one in the medical system is telling patients and their families about these resources, services available, information about your cancer, side effects of treatment or what is available to help you to have a good quality life.
Instead we get people being told that pain is in their mind, not real, we get the stories of the rush to surgery that may be inappropriate, the lack of support from the system, the lack of awareness of what is best practice treatment. People affected by cancer should not have to hunt this information out, they should be told it, it should be presented to them in a form that they can take away and think about, they should receive best practice treatment from the start and that includes all the necessary information.
Do you wonder that sometimes I despair?
How much longer do we have to put up with this?
The consequences of poor cartography could be dire. During the Napoleonic Wars, British losses by shipwreck, caused by bad charts as well as bad weather, were eight times as great as those inflicted by the enemy. Wilford