All-Party Parliamentary Group: Ethnicity Transplantation and Transfusion

Wednesday 1 Mayrrow 2024

NHSBT response to “Where are our nation’s donors?” inquiry report

To view and download a copy of the response from NHSBT, please click here.

Thursday 25 April 2024

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.

Wednesday 20 March 2024

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

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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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L to R: Nadia Martini, Baroness Mobarik, Yaser Martini, Sarah Olney MP (Chair of APPG)

ANNUAL GENERAL MEETING – WEDNESDAY 7 FEBRUARY 2024

The All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion held it’s Annual General Meeting (AGM) on Wednesday 7 February 2024 in Portcullis House.

Click the links below to view and/or download the following documents:

Attendance Sheet

Agenda and minutes of the Inaugural meeting (held on Tuesday 6 December 2022)

Minutes of meeting held on Wednesday 7 February 2024

Click here to view and download a copy of the report

• A report on the activities of the Group during the past year and on the proposed activities during the next

• Group Financial Accounts for the period, as presented and signed by the Chair

Registering the result of AGM

All enquiries: appg@teammargot.com or telephone Yaser Martini on 07770672559

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Published on Monday 11 December 2023

Over 100 people join the APPG Inquiry report launch

A week ago today, the All-Party Parliamentary Group (APPG) for Ethnicity Transplantation and Transfusion launched the inquiry report: ‘Where are our nation’s donors?’ with more than 100 people in attendance.

The launch followed a number of meetings with key stakeholders prior to the event and also some good news that Buckinghamshire New University had received funding approval for an evidence based research study on the enablers and blockers to people from mixed heritage and minority ethnic communities becoming blood and stem cell donors.

Included within this post are some photographs from the event. For more photographs and also a list of those who confirmed attendance prior to the launch, please click here.

What do we want to come out of our inquiry?

More donors in general, more donors from mixed heritage and ethnic minority communities in particular, greater visibility of donors within UK society, and for our healthcare services to be attuned to the needs of our whole population.

If you have ideas on what you can do to help the APPG achieve its aims, please get in touch via email: appg@teammargot.com

Thank you. 

 

Yaser

For and on behalf of the Group Secretariat

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Click image above, or here to view and download report

Published Monday 4 December 2023

The All-Party Parliamentary Group (APPG) for Ethnicity Transplantation and Transfusion (ETT) today published its report “Where are our nation’s donors?”. This follows an inquiry held by the Chair of the APPG – Sarah Olney MP along with Jackie Doyle-Price MP and Rt Hon Mark Tami MP – earlier this year. The inquiry received 54 pieces of written evidence and held two oral evidence sessions with expert witnesses.

The report says that the UK’s mixed heritage and ethnic minority population face a double whammy of inequity as they are more likely to need donors due to conditions which disproportionately affect them, such as sickle cell and kidney disease, but less likely to find well-matched donors on the blood, stem cell and organ donor registers. This is particularly true for patients in need of stem cell transplants for the treatment of blood cancer, where matched tissue type (most often found in donors from a similar ethnic background) is critical to successful outcomes.

Key recommendations include:

  • Improved governance and accountability – with a new minister to be appointed for transplant and transfusion inequalities, an equality tsar to galvanise action and a ministerial review of all organisations and national charities along the transplant and transfusion pathway
  • Improved data, reporting and transparency – with a roundtable to be convened by the Race Health Observatory to consider data recommendations made, a review by the Department of Health and Social Care of the strategic objectives and financial imperatives behind the targets for all forms of donor recruitment and a review of the Organ Donor (Deemed Consent) Act 2019 to understand the impact of a family’s rights to overturn donors wishes, with a particular focus on the impact on mixed heritage and ethnic minority donations
  • Improved education, awareness and activity – with a review of funding for charities and community campaign groups, and wide action to build a culture of donation across the whole UK population

Sarah Olney MP (Lib Dem, Richmond Park), Chair of the ETT APPG said:

“This is a very thorough and damning report. There has been over a decade of inaction and our first recommendation is that the Government should urgently appoint a minster to drive progress.”

“We heard that data collection is fragmented, and that it does not capture ethnicity in sufficient detail to facilitate the development of a strategy which would deliver a big enough pool of donors to support those needing transplants and transfusions. This is why we recommend the first task for a new minister should be to establish a unified approach to recording ethnicity and religion, so we have completeness and accuracy of data needed to identify donors, evaluate treatments and save lives.”

“Finally, we need to improve education and awareness around donation in diverse communities. For too long, services and communication have been focussed predominantly on a white audience. With one in five of the UK population now mixed heritage and ethnic minority, rising to one in three of school age children, this has to change.”

Jackie Doyle-Price MP (Conservative, Thurrock) said:

“This report highlights what we have known for a long time – that lower rates of donation in some communities is leading to inequality in outcome for those in need of organs and stem cells. This must be tackled in order to save lives. Ministers need to show leadership to break down the practical and cultural barriers to progress.”

Beverley De-Gale OBE, Co-Founder of ACLT and mother of Daniel De-Gale said:

 “In 1996, my six-year-old son, Daniel, was diagnosed with blood cancer. As a person of colour his chances of finding a donor were less than one in 250,000 and he died after a long battle with the disease. This is a very important report because over a quarter of a century has passed since Daniel’s diagnosis and little or nothing has been done to solve the problem.”

Gurch Randhawa, Professor of Diversity in Public Health, University of Bedfordshire said:

“The evidence submitted to the inquiry showed that there are totally unacceptable inequalities for mixed heritage and ethnic minority patients in need of transplant and transfusion treatments, including signs that those organisations responsible for rectifying this situation don’t appear to have a financial strategy which makes proportionate mixed heritage and ethnic minority recruitment viable. Families testified that donors aren’t being found, and donors are invisible in society, which means lives are being lost. Despite these inequalities being known for many years, it was disappointing to learn that so little has been done to address them”.

Yaser Martini, from the charity Team Margot Foundation, said:

 “These are serious issues that don’t just affect healthcare; they affect our wider society in our education system, in employment, our national culture and social inclusion. The APPG aims to serve as a catalyst to break down departmental silos and increase political urgency on these critically important issues, ultimately to save and improve more lives.”

Ends.

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For more information on the inquiry, the “Where are our nation’s donors?” report and its recommendations, please contact: Yaser Martini | yaser@teammargot.com | +44 7770 672 559

The report was launched today in the House of Commons. For further information about the launch, photographs or interviews, please contact Yaser Martini

About: Team Margot Foundation (charity no: 1160236) provides secretariat support to the All-Party Parliamentary Group (APPG) for Ethnicity Transplantation and Transfusion (ETT) to raise awareness of health inequalities and to promote policy change to help save and improve more lives through greater ethnic donor participation.

APPG Report Where are our nation’s donors?APPG Report Where are our nation’s donors? Further information can be found on the Team Margot website – www.teammargot.com/appg

The All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion (ETT) Executive members are: Honorary President – The Baroness Benjamin DBE OBE; Chair – Sarah Olney MP (LibDem); Vice Chair – Rt Hon Mark Tami MP (Lab); Officers: Feryal Clark MP (Lab), Fleur Anderson MP (Lab), Jackie Doyle-Price MP (Con), Marsha De Cordova MP (Lab), Sir Peter Bottomley MP (Con).

 

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To read the written evidence submitted and to watch and hear the verbal evidence witness sessions for the All-Party Parliamentary Group (APPG) Inquiry (2023) into diversity, donation and delivery, please click here to visit: https://www.teammargot.com/all-party-parliamentary-group-inquiry/

The APPG inquiry report launch event is scheduled to take place in Westminster on Monday 4 December 2023.

All enquiries: appg@teammargot.com

Thank you.

Team Margot Foundation
Group Secretariat

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Published 26 July 2023

MARK BALE APPOINTED CHAIR OF THE STEERING GROUP FOR THE ALL-PARTY PARLIAMENTARY GROUP FOR ETHNICITY TRANSPLANTATION AND TRANSFUSION

Dr Mark Bale has been appointed as the Chair of the All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion’s Steering Group.

The Steering Group is a committee of experts on the impact of ethnicity on transplantation and transfusion that advises the Chair and Executive Committee of the All-Party Group on the latest developments in the field and make recommendations for activity for the Group. It includes clinicians, data scientists, academics, representatives of charities and campaign groups.

Mark was awarded a PhD in Microbial Genetics from the University of Wales Institute of Science and Technology in 1987. Over the past 30 years he has led and shaped Government policy at the intersection between research, healthcare, ethics and legislation.

Sarah Olney MP, Chair of the All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion’s Steering Group.said “I am delighted that Mark has agreed to take the Chair of our Steering Committee. His enormous experience of health policy and ethics will be invaluable to  Group’s work  in ensuring that everyone has a fair chance to find a donor irrespective of their race.”

For more information contact Yaser Martini yaser@teammargot.com or +44 7770 672 559

About: Team Margot Foundation (charity no: 1160236) provides secretariat support to the new All-Party Parliamentary Group (APPG) for Ethnicity Transplantation and Transfusion (ETT) to raise awareness of health inequalities and to promote policy change to help save and improve more lives through greater ethnic donor participation. Further information can be found on the Team Margot website – www.teammargot.com/appg

The All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion (ETT) Executive members are: Honorary President – The Baroness Benjamin DBE OBE; Co-Chair – Sarah Olney MP (LibDem); Vice Chair – Bambos Charalambous MP (Lab); Vice Chair – Mark Tami MP (Lab):Officers: Feryal Clark MP (Lab), Fleur Anderson MP (Lab), Marsha De Cordova MP (Lab), Sir Peter Bottomley MP (Con).

 

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Published 30 June 2023

Witness Evidence Sessions

Zoom evidence gathering sessions were held on:
Thursday 29th June 2023 10 am – 12.30 pm

Click on the following links to access video recordings of Witness Evidence sessions:

Click here to watch video recording of evidence session 1 

Session 1 (10am – 11am)
Outlining the problem

Orin Lewis OBE, CEO, African Caribbean Leukaemia Trust

Gurch Randhawa PhD FFPH DL, Professor of Diversity in Public Health & Director, Institute for Health Research University of Bedfordshire

Michele Salter, CPFA (Hons), Chair of Trustees & Treasurer, Sickle Cell Society UK

Delordson Kallon, PhD., FIBMS, FRCPath, Consultant Clinical Scientist and Specialty Clinical Lead for Transplantation,NHS East and South East London Pathology Partnership Barts Health NHS Trust, Honorary Senior Lecturer, Queen Mary University of London (QMUL)

Rajesh Sivaprakasam MBBS, MRCS, M.Phil ( Cambridge), FICRS, FACS, FRCS
Consultant in Transplant, Access and General Surgery,  Lead for Robotic renal failure Surgery, Research and Education, Chair for Bartshealth Robotic research programme.

Click here to watch video recording of evidence session 2

Session 2 (11:30am – 12:30pm)
Current provision and issues

Gail Miflin, Chief Medical Officer and Director of Clinical Services, NHS Blood and Transplant

David Rose, Director of Donor Experience and Communications, NHS Blood and Transplant

Henny Braund, CEO, Anthony Nolan

Professor Smeeta Sinha, National Clinical Director for Renal Services, NHS England

Professor John Snowden BSc, MBChB, MD, FRCP (London), FRCP (Edin), FRCPath, DTM&H, Consultant Haematologist, Director of Blood and Marrow Transplantation (BMT) Programme, Sheffield Teaching Hospitals NHS Foundation Trust.

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Witness Evidence Sessions

Thursday 29th June 2023 10 am – 12.30 pm

Published 27 June 2023

We are pleased to announce the upcoming Witness Evidence Sessions, an important part of our ongoing inquiry into health inequalities in transplant and transfusion treatments. These sessions will be chaired by Sarah Olney MP on behalf of the APPG and held virtually via this Zoom link on Thursday 29th of June 2023 between 10:00 am and 12:30 pm.

You are invited to participate as an observer. The sessions will be recorded and a video of the sessions will later be made available on https://www.teammargot.com/all-party-parliamentary-group-inquiry/

The sessions will feature a panel of distinguished witnesses – please see below and click here for their biographies. Their collective expertise will illuminate the current state of organ, blood, and stem cell donation in the UK, particularly as it pertains to the needs and experiences of our diverse communities.

Our aim in these sessions is to foster a candid dialogue and to explore how we can collaboratively work to reduce health inequalities. We are particularly keen to understand how we can increase donor registration from underrepresented groups and in doing so improve patient outcomes.

This inquiry is driven by a commitment to the principles of fairness, representation, and health equity. We are eager to learn from our witnesses’ experience and insights, and to translate this knowledge into meaningful, actionable changes. Their testimonies and ideas, alongside the evidence submissions received will play a crucial role in helping us achieve our goals.

We view these sessions as an opportunity for open, transparent conversation. By engaging key stakeholders in this dialogue, we hope to ensure that the voices of all communities are heard, and their unique experiences and needs are taken into account in shaping the future of transplant and transfusion treatments in the UK.

These sessions underline our belief in ‘doing the doing’—in using this inquiry not just as an exploration, but as a catalyst for change.

We are very grateful to everyone who has submitted evidence for this inquiry and in particular to our witnesses for their time and commitment to this important cause, and we look forward to a productive and enlightening session.

Thank you.

Team Margot Foundation
Group Secretariat

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Session 1 (10am – 11am)
Outlining the problem

Orin Lewis OBE, CEO, African Caribbean Leukaemia Trust

Gurch Randhawa PhD FFPH DL, Professor of Diversity in Public Health & Director, Institute for Health Research University of Bedfordshire

Michele Salter, CPFA (Hons), Chair of Trustees & Treasurer, Sickle Cell Society UK

Delordson Kallon, PhD., FIBMS, FRCPath, Consultant Clinical Scientist and Specialty Clinical Lead for Transplantation,NHS East and South East London Pathology Partnership Barts Health NHS Trust, Honorary Senior Lecturer, Queen Mary University of London (QMUL)

Rajesh Sivaprakasam MBBS, MRCS, M.Phil ( Cambridge), FICRS, FACS, FRCS
Consultant in Transplant, Access and General Surgery,  Lead for Robotic renal failure Surgery, Research and Education, Chair for Bartshealth Robotic research programme.

Session 2 (11:30am – 12:30pm)
Current provision and issues

Gail Miflin, Chief Medical Officer and Director of Clinical Services, NHS Blood and Transplant

David Rose, Director of Donor Experience and Communications, NHS Blood and Transplant

Henny Braund, CEO, Anthony Nolan

Professor Smeeta Sinha, National Clinical Director for Renal Services, NHS England

Professor John Snowden BSc, MBChB, MD, FRCP (London), FRCP (Edin), FRCPath, DTM&H, Consultant Haematologist, Director of Blood and Marrow Transplantation (BMT) Programme, Sheffield Teaching Hospitals NHS Foundation Trust.

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Inquiry into diversity, donation and delivery

CALL FOR EVIDENCE

Where are our nation’s donors?
Your evidence is needed please.

12th May 2023

The inaugural stakeholder meeting of The All-Party Parliamentary Group (APPG) for Ethnicity Transplantation and Transfusion took place in Westminster on 27th March 2023. It was attended by 110 individuals, including patients, donors, families, nurses, clinicians, leaders of NHSBT and charity organisations. On that day, the Chair, Sarah Olney MP (Richmond Park) announced the launch of its inquiry into diversity, donation and delivery.

As Secretariat for the APPG, Team Margot firmly believe in fostering collaborative and inclusive discussions that drive positive change for the benefit of all. As such, we are reaching out to you today to invite your valuable contribution to this inquiry through the submission of evidence.

This call for evidence is an open invitation to individuals and organisations who possess relevant expertise, experience, or insights that might help achieve equitable access of transplant and transfusion treatments for mixed and minority ethnic patients. We are keen to gather a wide range of perspectives and data to enrich our understanding of the associated challenges and opportunities.

In particular, we wish to collect evidence from those who are instrumental in assisting patients in obtaining their treatment. We would be most grateful for your participation.

Please click here for the Terms of Reference for the inquiry and the call for evidence.

We kindly invite you to submit evidence in the form of written submissions. Please ensure that submissions reach us no later than noon on Monday 12 June 2023.

Your responses to this call for evidence is very much appreciated by the Chair and Officers of the APPG for Ethnicity Transplantation and Transfusion.

If you have any questions regarding the above, please write to the APPG Secretariat, Team Margot Foundation via: appg@teammargot.com

Thank you.

Team Margot Foundation
APPG Secretariat

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ALL-PARTY PARLIAMENTARY GROUP FOR ETHNICITY TRANSPLANTATION AND TRANSFUSION ANNOUNCE PARLIAMENTRY INQUIRY INTO DIVERSITY, DONATION AND DELIVERY

27th March 2023

The recently formed All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion announced the launch of Parliamentary Inquiry into the access to donors for those from diverse ethnic backgrounds.

The Inquiry was announced at the Groups inaugural launch in Parliament today to an audience in excess of 120 guests including donors, patients, donor and patient families, clinicians, charities, national donor registers, NHS Blood and Transplant (NHSBT), Department for Health and Social Services (DHSC), MPs and Peers.

Attendees were welcomed by award-winning TV presenter Jay Blades MBE and the Chair of the Group, Sarah Olney, Liberal Democrat MP for Richmond Park, introduced the speakers:

● Jabeer Butt OBE, Chief Executive, Race Equality Foundation
● Professor Gurch Randhawa PhD FFPH DL, Professor of Diversity in Public Health and Director, Institute for Health Research
● Jay Patel, the father of Aari Patel who donated 7 organs and saved the lives of 2 other children, after he tragically passed away at the age of three

Announcing the Inquiry, Sarah Olney said “We live in an increasingly diverse world. Whilst 18% of the UK population is from an ethnic minority, this becomes 34.5% for pupils in primary and secondary schools. The NHS is not prepared for this diversity. Our NHS is focused on meeting the health and care needs of all people, however when it comes to transplant and transfusion, stark healthcare inequalities exist for mixed and minority ethnic patients. Because nothing can happen without a donor.

Our Group’s inquiry will explore why it’s so much harder for patients from diverse backgrounds to find suitable donors and make concrete policy proposals to ensure that everyone has a fair chance to find a donor irrespective of their ethnicity.”

Yaser Martini, from the charity Team Margot Foundation, said “Today’s event and the coming together of so many of those involved with and responsible for blood, organ, stem cell and bone marrow transplant and transfusion across the UK, illustrates the desire within this community to deliver a future where every patient, regardless of their ethnicity or heritage, is able to receive the same opportunity to benefit from a suitably matched transplant or transfusion.”

Click here or on the above image to download the booklet presented at this inaugural stakeholder meeting

For more photographs from this event, click here.

About: Team Margot Foundation (charity no: 1160236) provides secretariat support to the All-Party Parliamentary Group (APPG) for Ethnicity Transplantation and Transfusion to raise awareness of health inequalities and to promote policy change to help save and improve more lives through greater ethnic donor participation.

The All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion Executive members are:
Honorary President – The Baroness Benjamin DBE OBE
Co-Chair – Sarah Olney MP (LibDem)
Vice Chair – Bambos Charalambous MP (Lab)
Vice Chair – Mark Tami MP (Lab)
Officers:
Feryal Clark MP (Lab)
Fleur Anderson MP (Lab)
Marsha De Cordova MP (Lab)
Sir Peter Bottomley MP (Con)

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6th December 2022


L to R: Yaser Martini, Orin Lewis, Sir Peter Bottomley MP (Officer), Nadia Martini

Megan Harding, Sarah Olney MP (Chair) and Fleur Anderson MP (Officer)

A new All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion (ETT) held its inaugural meeting in Parliament today.

Chair, Sarah Olney, MP for Richmond Park, said “The sad reality is that it is far harder to find a match for organ donation if you are from an ethnic or mixed-race background. The latest census data shows that 18% of the UK population is from an ethnic minority. It is vital that transplantation and transfusion services engage with ethnicities from all backgrounds if the NHS is going to serve our increasingly diverse population.”

Orin Lewis OBE, Chair of the National BAME Transplant Alliance and co-Founder of ACLT said “We are raising awareness of how the lack of donor participation affects patients with ethnically diverse backgrounds. Mixed and minority ethnic patients requiring an organ, stem cell or bone marrow transplant or a blood transfusion face enormous health inequalities. It is vital that there is equal access to transplants and transfusions for mixed and minority ethnic patients.”

“The new All-Party Group will advocate changes to encourage more donors to come forward from ethnically diverse communities to donate blood, organs, stem cells and bone marrow. This will help save and improve the lives of patients from all backgrounds across the UK.”

L to R: Orin Lewis, Mark Tami MP (Officer), Paul Hegarty (Honorary Secretary), Nadia Martini, Yaser Martini, Tim Hammersley, Alan Miller

Team Margot co-founder, Yaser Martini BEM, said “I discovered the vital importance of donors when my own daughter, Margot, was diagnosed with Leukaemia at just 14 months of age. Whilst a donor was found for Margot and she had a transplant, the registers of unrelated donors are not sufficiently diverse and Margot’s mixed heritage was the main obstacle to finding her ‘perfect match’.”

“This new Parliamentary Group will work to ensure that we develop the right policies in the UK to ensure everyone is able to access the right treatment, whatever their ethnicity. To ensure that no more families have to face the tragedy of losing a loved one for the lack of a life-saving donor match.

6th December 2022

For more information contact Yaser Martini
yaser@teammargot.com or +44 7770 672 559

 

AboutTeam Margot Foundation (charity no: 1160236) will provide secretariat support to the new All-Party Parliamentary Group (APPG) for Ethnicity Transplantation and Transfusion (ETT) to raise awareness of health inequalities and to promote policy change to help save and improve more lives through greater ethnic donor participation. Further information can be found on the Team Margot website

The All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion (ETT) Executive members are: Honorary President – The Baroness Benjamin DBE OBE; Chair – Sarah Olney MP (LibDem); Vice Chair – Bambos Charalambous MP (Lab); Vice Chair – Mark Tami MP (Lab); Officers: Feryal Clark MP (Lab), Fleur Anderson MP (Lab), Lord Evans of Rainow (Con), Marsha De Cordova MP (Lab), Sir Peter Bottomley MP (Con).