How can learning disabled people and their families work together with health professionals?

Catherine and Johanna de Haas

Johanna and I are a mother and daughter team, supported by PAs. Johanna communicates without words. Johanna has had two periods of 4 months of living in hospital; on an adult ward. Both times, I moved into hospital with her. However the only place for me to lie down and rest was on the floor. We would like to talk about our experiences of working with health professionals; in particular about the times we were in hospital. What did we do to help the professionals over their fear and lack of knowledge and experience of profound disability? How can written materials help this process? In what circumstances would it be safe for me to leave the hospital? We will use pictures to illustrate our talk by power point presentation. I was a speech therapist for 10 years before she was born and continued to work for the first 13 years of her life. I am currently studying an MSc in profound and complex learning disabilities.