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1 n The Leeds Teaching Hospitals NHS Trust Beads of Courage Information for patients org

2 The Beads of Courage Programme is a new concept being introduced in the UK which is designed to support children and young people going through treatment for cancer. It allows you to tell your story using colourful beads. The beads are used as meaningful symbols of courage that commemorate different milestones such as blood transfusions, bone marrow transplants, hospital stays, chemotherapy and radiotherapy treatments. Your beads build up over time into a unique record of what you have been through. 2 The Beads of Courage Programme is a new concept being introduced in the UK which is designed to support children and young people going through treatment for cancer. It allows you to tell your story using colourful beads. The beads are used as meaningful symbols of courage that commemorate different milestones such as blood transfusions, bone marrow transplants, hospital stays, chemotherapy and radiotherapy treatments.

3 Your beads build up over time into a unique record of what you have been through. In 2005, the Beads of Courage programme was established in America by an oncology nurse. She wanted to address the emotional needs of both children and young people facing a cancer diagnosis. It is currently in 150+ hospitals in 5 countries. Each bead you (or your child) will receive will tell a story of your unique cancer journey. Every child and young person on active treatment will be given the opportunity to enrol on the programme. If you decide to participate you will receive: A bead journal to keep a record of the beads you need. A lanyard. A Be Child Cancer Aware bead and registration form. Beads spelling out your first name. A bead bag. The Beads of Courage programme is about your experience. You are responsible for completing your bead journal and ensuring you receive your beads. Be Cancer Aware holds an exclusive license to provide the programme in the UK and as a charity. org 3

4 There are many different meanings for each bead, you will receive more information if you decide to enrol. Here are some examples Blue Clinic visit Orange White Glow in the dark Star Black Red Yellow Grey Light green Line/port placement Chemotherapy Radiotherapy Surgery Injections Blood products Inpatient admission Dressing change Scans The bead journal lists all the potential procedures and experiences to cover all diagnoses. You will not experience everything on this list, everyone is different. 4

5 Guidelines Remember to fill in your treatment journal each day / week. Once you receive your beads, staff will mark it off in your journal. The Beads of Courage Programme is not a competition or race, it is your unique journey throughout treatment. Your friends on the ward will have a different journey and their bead string will not be the same. The beads are not to be swapped or traded. Once we launch the programme you will need to backdate your beads. You will then receive one 100 club bead to represent all previous procedures. The beads will then be allocated in accordance with your treatment from that date. If you would like to receive all of your backdated beads, rather than use the 100 bead club system, please contact Be Child Cancer Aware. Staff members will not be available to look through notes to determine exact numbers of beads. Please respect that it may be difficult for staff members to give beads in busy periods therefore, journals are a good way to backdate if necessary. Due to infection control, staff members will distribute your beads from the bead tray. When you feel you are ready to receive your end of treatment bead, please see ward staff. This may be once you have finished your very last treatment, your last scan, when you have had your line/port removed or when you have heard from your consultant. You guide us, however this will only be given out once. 5

6 Please take care of your beads, once given by staff they are your responsibility as lost beads cannot be replaced Please be aware that the beads can be hazardous and the hospital trust will accept no responsibility for accidental injury once you are in possession of the beads. The beads may be a choking hazard to small children. They are dangerous if placed in the nose, ear or mouth. They are not a toy 6

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8 The Leeds Teaching Hospitals NHS Trust 2nd edition Ver 1 Developed by: Lucy Junni, Paediatric Radiographer Produced by: Medical Illustration Services MID code: _001/JG LN Publication date 06/2017 Review date 06/2020

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