The programme started in America in 2004 and was soon rolled out in Japan and New Zealand. In its infancy in the UK, the initiative is being rolled out at Southampton General Hospital’s Piam Brown Children’s Ward, and the running costs have been funded by a donation from Sophie’s Appeal.
Major benefits of the programme are that it helps to decrease distress, provides a coping strategy and helps children find meaning in illness. The programme also provides something tangible that a child can use to tell family and care-givers about their experience during treatment. The beads also help explain to teachers and friends what has happened to them whilst they have been away from school.
One of Sophie’s special hospital friends, eighteen year old Hannah Wright (pictured) has been participating in the scheme since December 2011. She has collected 10,868 beads so far (as at July 2013) during her treatment for Acute Lymphoblastic Leukaeima Philadelphia Positive. (ALL ph+) and managed to collect the beads for treatment she has received since 2004. She said: “The beads make something positive out of horrible experiences and it's nice to get special beads when something is over and done with. They make people realise exactly how much you go through and it's not 'just ' chemo you have to deal with. The beads also make it easier to tell people your experiences and of course they are really pretty. When my doctors ask if I will have extra treatment or tests I just tell them,
"It's all about the beads!"
Lin Barringer, Sophie’s Mum and Charity Founder, added, “Sophie would have been proud of her beads and would have talked to and educated her family and peers about her experiences. It is such tangible evidence of what these children have gone through in their personal battles to fight this disease. It is their journey, their story. For me, as a Mum, I wish this programme had been available to Sophie. She would have been proud of her beads. For a grieving family, I am sure during our darkest days Sophie’s beads would have in some way given us some comfort, would have helped us talk about our feelings, just as she had. For us Sophie would have lived on through her beads."
