All-Party Parliamentary Group: Ethnicity Transplantation and Transfusion

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:

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).