Response to Open Letter to the Prime Minister from DHSC 25.4.24

Please find below a reply to the open letter the group sent to the Prime Minister on 20 March 2024 (also below, for ease of reference). You’ll note the reply is signed off by Andrea Leadsom, in her role as Parliamentary Under-Secretary of State for Public Health, Start for Life and Primary Care.

It is disappointing that the letter does not appear to recognise the scale of the problem or acknowledge the lack of progress over the past decade.  It only serves to re-enforce the need to keep up the pressure on politicians from all parties for urgent action to address the serious racial inequalities in access to transplantation and transfusion services in the UK.

Thank you for your support.

The above open letter from the Chair of the Group was co-signed by:

  1. Alastair Campbell, Writer, Campaigner, Podcaster
  2. Abiola Okubanjo, Action on Blood
  3. Alexander Salussolia MD, Foundation Group
  4. Alexander Wood, Renal Network Manager (North East and North Cumbria)
  5. Alfred Dowe, Grandfather of a bone marrow recipient
  6. Alistair Petrie, Actor
  7. Dr Amos Ogunkoya, TV Presenter, GP and Sports Medicine Specialist
  8. Andrea Brown, Chief Executive, National Kidney Federation
  9. Ash Atalla, CEO, Roughcut Television
  10. Baba Inusa, Chair, National Haemoglobinopathy Panel; Chair, Grants and Research Committee, British Society of Haematology
  11. Baroness Floella Benjamin, OM DBE, Honorary President of Ethnicity Transplantation and Transfusion APPG
  12. Baroness Mobarik CBE
  13. Ben Hampshire, Donor
  14. Ben Jowitt, Donor-in-waiting
  15. Mrs Bahmini Ranjan, Donor
  16. Beverley De-Gale OBE, Co-Founder of ACLT (African Caribbean Leukaemia Trust)
  17. Bianca Effemey OBE, CEO & Founder, Momentum Children’s Charity
  18. British Transplantation Society, Executive Committee
  19. Bronwyn Crockett, Donor
  20. Carrie Scuffell, Transplant Specialist Nurse
  21. Cath Harries, Registered Stem cell donor
  22. Chanel Taylor, Founder, Unsickle My Cells
  23. Chidimma Onyejiaka, Patient and Public Involvement and Engagement Manager, CRN North Thames
  24. Christine Woods
  25. Cynthia Tewogbade, Sickle Cell Advocate
  26. Dr D S Richardson, Consultant in Blood and Marrow Transplant & Cellular Therapy
  27. Damian Collier, Friend
  28. Damian Finnegan, Consultant Haematologist and Lead for Donor Stem Cell Transplantation at Belfast City Hospital
  29. Dr Daniel McCloskey, Trustee of Team Margot Foundation
  30. Dawn Butler MP, Member of Parliament for Brent Central
  31. Sir Ed Davey MP, Member of Parliament for Kingston and Surbiton & Leader of the Liberal Democrats
  32. Edwina Dunn, Founder & CEO of The Female Lead
  33. Elaine Bell, Mother of a stem cell donor
  34. Emma Chichester Clark, Friend
  35. Emma Stapley, Donor
  36. Miss Feyona Daley, Patient
  37. Fiona Hazell, Chief Executive, Leukaemia UK
  1. Fiona Loud, Kidney Recipient & Policy Director, Kidney Care UK
  2. Dr Frances Dowen, Consultant Nephrologist
  3. Frank Fletcher CEO, Ellen MacArthur Cancer Trust
  4. Ger Graus, Patient Family’s friend
  5. Gurch Randhawa PhD FFPH DL, Director of the UK Organ Donation & Transplant Research Center at the University of Bedfordshire
  6. Heidi Hampshire, Donor
  7. Helen Gravestock, Director of Policy, Communications and Voice, Young Lives vs Cancer
  8. Hilary Lindsay, Chair, CLL Support
  9. Jacob Knox-Hooke, Trustee, Race Against Blood Cancer
  10. Jade Johnson OLY
  11. Dr Jill Shepherd, Senior Lecturer in Stem Cell Biology, University of Kent; Member, UK Stem Cell Bank Steering Committee
  12. Jay Blades MBE, Eco Designer & Award-Winning TV Presenter
  13. Joel Cadbury, Chairman, Longshot Ltd
  14. John James OBE, Chief Executive, Sickle Cell Society
  15. John McDonnell MP, Member of Parliament for Hayes and Harlington
  16. Jonathan Smith, Co-Founder Skylark Works, Charity Supporter
  17. Judi Rhys MBE, Chief Executive Officer, Tenovus Cancer Care
  18. Judy Leden MBE, Stem Cell Donor
  19. Kailayapillai Ranjan, Donor
  20. Katy Brown, Donor
  21. Kay and Keith Sudbury, The Adrian Sudbury Schools’ Education Trust (ASSET)
  22. Keith Dugmore MBE, retired Director of Demographic Decisions Ltd
  23. Keith Knowles OBE CBll, CEO, Beds & Bars Ltd
  24. Kirit Mistry, Founder and lead for health inequalities, South Asian Health Action.
  25. Kirit Modi MBE, Honorary President of NBTA & Chair of JHOD
  26. Krishani Ranjan, Donor
  27. Lisa Silas, Advanced Nurse Practitioner and Co-Chair London Kidney Network Transplant Collaborative
  28. Lowri Griffiths, Chair, Wales Cancer Alliance
  29. Dr Lucy McKay, CEO, Medics4RareDiseases
  30. Luke Bugdol, Stem Cell Donor
  31. Dr Luke Yates, Life Live Give Life
  32. Lynette Dowe, Grandmother of a bone marrow recipient
  33. Professor Mahendra G Patel OBE, Director for the Centre for Research Equity University of Oxford
  34. Manhar Mehta, Chairman, Vanik Council UK & Coordinator for organ donation in the Jain and Hindu Communities
  35. Dr Mark Bale, Genomics & Bioethics Advisor and Chair of Ethnicity Transplantation and Transfusion APPG Steering Group
  36. Mark Tami MP, Member of Parliament for Alyn and Deeside
  37. Martin Beaumont
  38. Mary Glindon MP, Member of Parliament for North Tynside
  1. Melanie Ireland, Patient Family
  2. Michael Dynan, The Assembly Events
  3. Nadia Martini, Patient Family
  4. Neil Robertson
  5. NHS Race and Health Observatory
  6. Nishtha Chugh, Churchill Fellow, 2016
  7. Orin Lewis OBE, Chief Executive of ACLT (African Caribbean Leukaemia Trust) & Chair of NBTA (National Black, Asian, Mixed Race and Minority Ethnic Transplant Alliance)
  8. Dr Paul Harden, Chairman, Transplant Sport
  9. Paul Veys, Professor of Allogenic Cell Therapy UCL & Previously Director Blood andMarrow Transplantation Great Ormond Street Hospital for Children (1994-2021)
  10. Professor Persis Amrolia, Professor of Transplantation Immunology; Infection, Immunity & Inflammation Dept. UCL GOS Institute of Child Health
  11. Peter McCleave, 10,000 Donors
  12. Philippa Esson, Nurse
  13. Pip Wilson, Donor
  14. R. Cameron Crockett, Donor
  15. Rachel Hopkins MP, Member of Parliament for Luton South
  16. Rajesh Sivaprakasam, Consultant in Transplant, Access and General Surgery, Lead for Robotic renal failure Surgery, Research and Education, Chair for Barts health Robotic research programme
  17. Robert James, Friend
  18. Robin Norris, Chairman, Keystone Group of Companies
  19. Ros Mafi, Stem Cell Donor
  20. Roydon Turner, Director and Producer, Awesonova / Orgamites
  21. Dr Saeed Ahmed, Consultant Interventional Nephrologist and General Medicine Physician
  22. Sally Bee, Heart patient and donor campaigner
  23. Salmaan Dalvi PhD, Global Regenerative Medicine Society
  24. Sandra Currie, Chief Executive, Kidney Research UK
  25. Sarujan Ranjan, Donor
  26. Sheeraz Naqvi, Asian and Middle Eastern Blood Cancer Trust
  27. Dr Stefano Casalotti, Patient Family
  28. Stephan Schumacher, DKMS UK
  29. Stephen Glancey
  30. Dr Supanya Lamsam, Patient Family
  31. Tal Arrowsmith
  32. Terry Archbold, Beatrix’s Heart Journey / Hero Inside
  33. Tim Smith, Donor
  34. Sir Trevor Phillips, Sickle cell Carrier; Chair, Webber Phillips & former chair, Equalities and Human Rights Commission
  35. Uthishtan Ranjan, Donor
  36. Virendra Sharma MP, Member of Parliament for Ealing, Southall
  37. Vivian Osho, Sickle Cell Advocate
  38. Yaser Martini BEM, Patient family