March 20, 2024

Urgent Call to Action for Improving Donor Availability and Transplant & Transfusion Equity in the UK

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In an unprecedented move, over 110 experts, individuals and organisations have signed an open letter to the Prime Minister (co-signatories listed below), urging immediate actions to address the shortage of organ, blood and stem cell in the UK. Spearheaded by the All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion, the letter calls for vital reforms to save lives and improve health outcomes for ethnic minority and mixed heritage communities.

The letter outlines three recommendations for the government: improved governance and accountability through a review of transplant pathways; enhanced data reporting and transparency to identify health disparities; and increased education and awareness to highlight the importance of donation. These recommendations come in the wake of the “Where are our nation’s donors?” report launched in December 2024, which sheds light on the significant challenges faced by patients from mixed heritage and ethnic minority communities in accessing life-saving treatments in the UK.

Sarah Olney MP, Group Chair

Emphasising the need for urgent action, Sarah Olney MP, Chair of the All-Party Parliamentary Group said, “The unity and diversity of the signatories of this letter demonstrate the widespread recognition of the issues at hand and the collective will to address them. We are at a critical juncture where action can lead to significant improvements in health benefits, save many lives, and reduce the financial cost to the British taxpayer.”

The letter requests a meeting with the Prime Minister to discuss the implementation of the Inquiry’s recommendations and to consider direct actions for immediate improvements.

The signatories, ranging from medical professionals, patients, and donor families to Members of Parliament and celebrities, represent a broad cross-section of the UK’s population. They stand together in their commitment to improving health outcomes and equity of access to treatment across the UK.

“We believe that with coordinated effort and strong leadership, significant progress can be made,” Sarah Olney MP added. “These steps will not only improve the lives of those urgently in need of transplant and transfusion treatments but also contribute to a more equitable and effective healthcare system for all.”

The APPG for Ethnicity Transplantation and Transfusion eagerly awaits the Prime Minister’s response and is ready to work alongside the government and other stakeholders to implement these crucial changes.

For further information and media enquiries, please contact the Group Secretariat: Yaser Martini on 07770672559 / appg@teammargot.com

______

The Rt Hon Rishi Sunak MP Prime Minister
10 Downing Street
London

SW1A 2AA

Dear Prime Minister,

20 March 2024

We, the undersigned are committed to improving health outcomes and equity of access to treatment in the UK and are writing in unity for your support and to draw attention to crucial issues in the field of blood, organ and stem cell treatments, which concern in particular, the nation’s mixed heritage and ethnic minority communities that represent 1 in 5 UK adults and 1 in 3 school children.

The recently published report by the All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion entitled “Where are our nation’s donors?” (attached) provides a comprehensive overview of the challenges and inequities faced by patients from these communities in accessing life-saving treatments.

We believe that the recommendations of the inquiry report, which are within the remit of your Government, will lead to significant improvements in health benefits, and save many lives and, improve efficiencies in our healthcare system and reduce its financial cost to the taxpayer. The three headline recommendations are:

•Improved governance and accountability via a review of transplant pathways;

•Improved data, reporting and transparency to identify health disparities;

•Improved education, awareness and activity to highlight the importance of donation;

We understand the nature of the complexities and challenges in addressing these issues but believe that with coordinated effort and strong leadership, significant progress can be made. These steps will not only improve the lives of those urgently in need of transplant and transfusion treatments, but will also contribute to a more equitable and effective healthcare system.

On behalf of the undersigned and as Chair of the All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion, I request a meeting with you, at your earliest convenience, to discuss this critical healthcare matter of national importance and to consider the direct actions and steps that can be taken to save and improve many more lives across our nation, especially those from the ethnic minority and mixed heritage communities.

We eagerly await your response.

Yours sincerely,

Sarah Olney
Member of Parliament for Richmond Park
Chair of the All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion

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

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