The Donor Perspective Catherine Burlton Title slide (option number 2) For a more formal presentation, use this slide and be sure to delete slide 1. Add your name for presentation glory. The white body text allows for a small blurb. Just delete it if you don’t want to ruin the surprise.

Process Overview 1/4 Horizontal Page Split Diagram. Quality Management and Medical Officers Logistic and Work-ups and Volunteer Services Special Services and Cord Bank Donor Follow Up Donor Support VT Team Search Team Donor joins the register / cord collected Search request received from transplant centre Blood samples requested for potentially matching donors/cord Match identified donor donates/cord shipped Keep in touch with donor for 10 years after donation 1/4 Horizontal Page Split Diagram. Make some room for your on brand graphs and diagrams with this slide, and don’t forget people at the back of the room need to be able to read it too!

Donor Support When the donor joins the register: Ensure the donor’s details (both contact and medical) are kept up to date on the register Up to date details are vital to contact a potential donor as quickly as possible 1/4 Horizontal Page Split Diagram. Make some room for your on brand graphs and diagrams with this slide, and don’t forget people at the back of the room need to be able to read it too!

Search Running a search for a patient: Matching Criteria UK Search International Search Cords Matching Criteria Donor-patient HLA match IDM suitability (CMV status) Donor age Donor gender, parity ABO blood group Antibodies suitability (patient DSA) Donor availability, Registry reliability, risks of transmitted infection up t

International Options 1/4 Horizontal Page Split Diagram. Make some room for your on brand graphs and diagrams with this slide, and don’t forget people at the back of the room need to be able to read it too!

VT Team The Transplant Centre identifies suitable matches: Anthony Nolan donor has been identified as a potential match The VT team will contact them and arrange for blood samples to be drawn and sent to Labs for typing They will ask the donors to complete a medical questionnaire to confirm that they are fit to go on to donate It is vital blood samples are drawn and tested as quickly as possible to identify the best matched donor for the patient. 1/4 Horizontal Page Split Diagram. Make some room for your on brand graphs and diagrams with this slide, and don’t forget people at the back of the room need to be able to read it too!

Donor Provision Time to donate: The Donor Provision team contact the donor and arrange a date for the stem cells to be collected The donor will firstly undergo a full medical, essential for the health and safety of both the patient and donor. The donor may undergo a series of G-CSF injections if donating by PBSC before travelling to their collection centre. Then the stem cells will be collected from the donor (via PBSC or Bone Marrow) and transported to the hospital where the transplant is taking place Once a suitable donor has been identified the Transplant Centre will request them to donate. and diagrams with this slide, and don’t forget people at the back of the room need to be able to read it too!

Patient Services The Patient Services team Develop new ways to provide vital information and support to patients before, during or after transplant The team provides up to date information and support for patients and families affected by a SCT Recruit and train specialist nurses to improve the lives of people after a SCT Hold national education days to prepare people for life after transplant in 5% of cases they will be asked to donate PBSC or BM again; in 15% of cases they will be asked to donate lymphocytes – sometimes known as a top up cell to fight infection

Donor Follow Up After Donating: The Stem cells are couriered across the globe by our volunteer couriers Donors are visited on the day of donation by either a volunteer or a member of staff Donors are then asked to complete a series of medical questionnaires which start a few days after donation and continue for 10 years post donation. The team looks after donors until they have recovered and will refer them for additional treatment as needed. The team also sends updates on the patient to donors, handles patient - donor correspondence and requests for patients and donors to meet. In 5% of cases donors will be asked to donate PBSC or BM again; in 15% of cases they will be asked to donate DLI. in 5% of cases they will be asked to donate PBSC or BM again; in 15% of cases they will be asked to donate lymphocytes – sometimes known as a top up cell to fight infection

Donor Follow Up Updates: Donor Follow Up uses Promise to provide updates on a patients outcome to donors. Anthony Nolan only provides one update to donors at around 6-9 months post donation. We would like to increase this if possible, especially after a DLI or second donation. BSBMT provides updates on UK patients outcome to donors from International Registries. Donors who register with DKMS or NHSBT will receive updates via their registries. DKMS and NMDP provide multiple updates to donors, for example at 9,12,18 and 30 months. Donors are only told the patient’s outcome, we do not provide medical information. in 5% of cases they will be asked to donate PBSC or BM again; in 15% of cases they will be asked to donate lymphocytes – sometimes known as a top up cell to fight infection

Donor Follow Up Updates: Donors really value this information, when asked what else Anthony Nolan could do to improve, most replied that they would like more updates. “I appreciate that it has to be confidential but I would really like to know what happened to my person” “It would be good to get more information about the person if possible. I have found the most disappointing thing about doing the donation was the lack of information” “If possible (I know not always) updates on the recipient” “The possibility of at regular intervals being told how your recipient is doing”. “Would be really great to get some feedback on how my recipient was doing” “More updates about the patient we donate for as I do feel its a bit sad we don't really hear anything”. It in 5% of cases they will be asked to donate PBSC or BM again; in 15% of cases they will be asked to donate lymphocytes – sometimes known as a top up cell to fight infection

Donor Follow Up Updates: Thank You: We also use updates when a donor wishes to contact their patient a number of years after donating, to ensure they are still alive before the donor writes. Date of engraftment is used to support our CC’s JACIE accreditation. Thank You: From the donor follow up team – Catherine Lesley and Adeline Our donors Our contacts at International Registries It in 5% of cases they will be asked to donate PBSC or BM again; in 15% of cases they will be asked to donate lymphocytes – sometimes known as a top up cell to fight infection

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