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.”

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

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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.”

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

 

About:  Team 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).