Anonymity, secrecy and rejection of participation by the modern charity

Some charities would do well to read this…. so very true the breakdown in communication is detrimental to those who they are there to represent….. I’m sick of holding out a begging bowl for the leftovers… I’m heartily sick of being ignored and forgotten…

Utting-Wolff Spouts

In my former life as a pseudo-healthy academic I researched, wrote and taught extensively on ethics and what the absence of ethics in research and organisations mean for the individual. When I went from mildly ill to home- and sometimes bedbound-ill I suddenly had ample opportunity to observe communication patterns and online organisational behaviour towards sometimes very ill people. I am referring to charities and patient organisations whose purpose it is to represent those very ill people. It seems that these organisations forget their own purpose on occasion. When things go wrong and patients do not feel represented by a charity a number of things happen:

  • The charity ignores their concerns
  • The fervent supporters come out in force to verbally abuse the patients that have asked (justified) critical questions
  • The charity continues to shroud itself in silence
  • The patients who ask the critical questions start feeling alienated
  • Some, not all…

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