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Georgina Meyers - Supporting Families Through A Paediatric Bone Marrow Transplant
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Georgina Meyers - Supporting Families Through A Paediatric Bone Marrow Transplant

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This presentation was given by Georgina Meyers at the October 2012 CHA Conference, The Journey, in the 'Beyond Hospital Walls: Community Care' stream.

This presentation was given by Georgina Meyers at the October 2012 CHA Conference, The Journey, in the 'Beyond Hospital Walls: Community Care' stream.

Published in: Health & Medicine

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Transcript

  • 1. Supporting families through a paediatric bone marrow transplant Georgina Meyers
  • 2. Snap-shots of one family’s journey … … viewed from the pointy end of the canula.
  • 3. In the beginning The people  CanI buy you dinner?  How much chocolate do you have? The system I need you to know I talk to everybody.  The red folder.  She’s needle-phobic, we can do the tests here.
  • 4. Countdown The people  Place cannulas so you can still play computer games.  Catering quantities of Emla (hold the Band-aids) The system  He’s going to have a transplant. That’s good! (At least she doesn’t have to have a transplant.)  Here is your appointment list for the week.  You don’t need to know that.
  • 5. T-0 … off and running The people  Doctor was off-duty but came to see us anyway.  Salad dressing.  The Ninja Night Nurse.  He’ll be OK, don’t worry. The system  Not one, but two, doctors.
  • 6. Discharge … the music stops The people The system  Outreach nurses. Clone them.
  • 7. The waiting game The people?  LEGO Limbo.  Why did this happen to me? I just want to be normal. Do you think sometimes you can be so unhappy it would just be better if you were dead?  How is he going? (OK, the same, not so good.)  What can we do to help? (Give blood. I don’t know.) The system  It must be exhausting dealing with that every day.
  • 8. The other side (?) The school  Other patients are always “going great”. The system  Regional clinics.  How’s school? Do you need us to write a letter of support?
  • 9. Please … Ongoing, regular contact with our school and hospital communities. Phone? Skype? Schedules? Three-way partnerships between schools, hospitals and parents. Recognise that, just as medical care is not only about test results, neither is school. Both are part of the thing we call health.
  • 10. Thank you Ronald McDonald Charities (House and Learning Program) Sydney Children’s Hospital