The expert CF patient: reality or lip service?
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MacDonald, K. (2009) The expert CF patient: reality or lip service?, Cystic Fibrosis Worldwide Newsletter, , , ,
In the UK nineteen million people, approximately one third of the population, live with a chronic illness. (DoH 2005).This trend is rising and with increasing life expectancy will continue to do so. The cystic fibrosis population of eight thousand in the UK forms part of this group (CF Trust 2008) The term expert patient- is currently a very topical one, with health professionals acknowledging that patients with chronic conditions are often more knowledgeable about their disease than they are. This is almost always the case in CF as most people with CF have a diagnosis within the first two years of life and thereafter spend the rest of their lives living with and managing the disease. This experience of living with a disease inevitably brings knowledge and other skills such as resourcefulness and decision making.Imagine: There's a boy called Billie who really wants to be a girl. But he's not allowed to show it. And there's a god called Jehovah who's got a wardrobe full of frocks. A closet he's afraid to show anyone. A closet he's locked and thrown away the key. Additional Information: It's begun to strike me, reading the book of GENESIS, that God's hiding something. He's not being straight with us. He's got something hidden in his closet, and tonight we're going to find out what it is... We'll find out through an experiment. An experiment with form. Traditional ideas of what manhood means are bringing war to every continent and endangering all of our lives. It's urgent that we explore different understandings of what it means to be a man; and to do so we need to explore different forms. So myself, the director Lorenzo Mele and the composer Robert Burlin, decided to collaborate to see how far we could get making words work with music, and music work with words. I t's an experiment in another sense too. I've written about 60 plays and seen them through into production. But I've never performed in one of my own. I'm curious to see what happens when I try