Team Margot Foundation is a charity founded after the death of Margot Martini, a two-year-old girl who required a bone marrow transplant to survive after being diagnosed with a rare form of blood cancer. In order to have this treatment, Margot needed to receive bone marrow stem cells from an unrelated donor with matching HLA (Human Leukocyte Antigen). Prior to her death, Margot’s parents considered donating Margot’s organs to help other children in need of a transplant.
Whilst a ’suitable donation’ was provided for Margot and she eventually had her bone marrow transplant, the national and international registers of unrelated donors are not sufficiently diverse, and Margot’s mixed heritage was the main obstacle to finding her ‘perfect match’.
Patients of the Global Majority face disproportionate challenges when needing stem cell, bone marrow, or organ transplants, compared to Caucasian patients. These patients have a lower chance of locating a well-matched donor and are overrepresented on transplant waiting lists and under-represented on the organ donor registers. Patients of the Global Majority can wait up to twice the time for a donor compared to a Caucasian patient.
Sickle Cell is the fastest-growing genetic disease in the UK, and more Black people are needed as blood donors to meet the demand for rare subtypes, such as Ro.
Access for all
The charity came to Inclusive Leadership, a bespoke programme we run in partnership with Barclays, the charity wanted to explore ways of increasing access to stem cell and bone marrow treatment for patients from ethnically diverse communities and for those with mixed / multiple ethnicity.
Over the course of two two-hour fact-finding initial meetings, the Pilotlighter team probed the charity’s ways of working, structure, strategy and aims. Along with a myriad of supporting documents, the team grasped the charity’s brief and began to run with it. Over the next 10 weeks, the Pilotlighters conducted in-depth research and analysis, to provide tailored practical support to help Team Margot overcome their challenge.
The final feedback and presentation session touched on and probed some key areas (brand, structure, strategy and funding) of the charity and the charity’s leadership, which hadn’t been in the original brief. However, by doing so, it raised some key questions internally which needed to be considered and discuss.
Life after Pilotlight
After completing Inclusive Leadership, the charity has begun looking into implementing the recommendations around funding opportunities and the future of their education platform and modules.
A significant outcome of the review was the feedback on Team Margot’s aspirations to become more politically involved regarding transplantation and transfusions for People of the Global Majority (PGM) patients. This reinforced their aim to propose a new All-Party Parliamentary Group (APPG) and act as its secretariat. In December 2022, the inaugural meeting of the APPG: Ethnicity, Transplantation and Transfusion was held. On 27 March 27 2023, the foundation held the inaugural APPG stakeholder event with confirmed attendance of over 100 individuals with an interest in advancing accessibility and availability of treatment for patients of the Global Majority including patients, patient families, donors, clinicians, corporate and individual supporters, national charities, the NHS and NHSBT, MPs, and members of the House of Lords.
The report, feedback, genuine interest and generosity of time and effort in helping us review aspects of ourselves and our aims, has proved invaluable.
Alan Miller, Team Margot