NHS Blood and Transplant have published our Living Transplant Initiatives resources on their website. The videos, leaflets and other materials developed by the projects are available here.
NBTA Co-Chairs, Kirit Mistry and Orin Lewis, met this week with Parliamentary Under Secretary Department of health MP Jackie Doyle -Price. They discussed the issue of how to raise awareness of organ donation in BAME communities.
NBTA welcomes the announcement of an ‘opt-out’ consultation by the Government.
The focus of the consultation will be on three questions:
- How much say should families have in their deceased relative’s decision to donate their organs?
- When would exemptions to ‘opt-out’ be needed, and what safeguards will be necessary?
- How might a new system affect certain groups depending on age, disability, race or faith?
Orin Lewis, Chief Executive of Afro-Caribbean Leukaemia Trust & Co-Chair of National BAME Transplant Alliance said:
“As a parent of a young man who sadly passed away from Multiple Organ Failure, I gladly welcome the Prime Minister’s decision to instigate a much needed public Consultation on the relative positive and negative merits of England having an Opt Out Donation policy. Looking forward I am expecting a wide spectrum of heated but ultimately constructive views and opinions from key stakeholders across the public domain, with the end goal of ultimately saving many more lives across the wide diversity of patients in England needing an organ transplant.”
The consultation will run until the 6th March 2018.
NBTA members ACLT have launched a campaign called Our Silent Crisis, highlighting the need for organ donations from living people.
In 2016 the waiting list for kidney transplants was made up of 34% Black, Asian or Minority Ethnic (BAME) people. But of all the transplants that took place only 28% were to BAME recipients. The shows the difference between the supply of kidneys and the demand for them.
Across the UK around 5000 people are in need of a kidney and more than 250 people died while waiting during 2016-2017.
The average waiting time for a Black patient needing a kidney is three years. Not only is the number of Black people affected by kidney failure disproportionately high, but the number of Black donors is critically low as well.
Unless ordinary people come forward to become living kidney donors this number will rise, and the number of deaths will too.
- Blood and tissue types are more likely to match in people with the same ethnic background. Matching makes organ transplants possible
- Only 17 people from the Black community donated a kidney in 2016-2017, the lowest figure in 5 years
- Just 189 Black patients received a kidney transplant at the end of 2016-2017, meaning 600 patients are still waiting
Orin Lewis OBE, Co-Founder, Chief Executive of ACLT, said:
“This is a real issue facing our community. Our silent crisis needs to not be silent anymore: More donors of African Caribbean descent need to come forward and help us save lives. Too many people needlessly die waiting while friends, family and colleagues could provide a vital match. We need a game changer soon, if the current trend continues the future looks bleak for our community.”
Nina said ’You don’t need to be brave to be a donor. There’s nothing scary about it. My thing is that could be me. It could be anyone of my nephews, god-children or a family member. I wouldn’t be able to cope knowing that I needed this thing to live and none of you are going to help me.’
Nina’s incredible story can be viewed on YouTube. Please CLICK HERE
To read more about the ACLT living kidney campaign please CLICK HERE
The All Party Parliamentary Kidney Group held a Summit on living donation on 22 November 2017. The purpose of the Summit was to identify the reasons for the drop in the number of living kidney transplants in the UK, three years in a row; and to consider how we can reverse this trend. Key speakers from the Department of Health ( England), NHS England, NHSBT, the Transplant 2020 Oversight Group, a consultant nephrologist and the NKF shared their views on the current situation. The APPKG agreed to publish a Manifesto on living donation in January 2018 and this will set out recommendations for increasing living kidney transplants. A copy of the agenda for the Summit and a Briefing Paper on living donation are attached.
Orin Lewis, NBTA Co-chair, said:
“The Living Donor Transplant Summit was a very successful and informative event. The keynote speakers highlighted the present day landscape of Living Kidney donation with focus also on the historical and future relationship with deceased organ donation including the rise and relative fall in the registration numbers of living donors. The NBTA welcomes the work of the National Kidney Federation in bringing together many of the key stakeholders to review and instigate new policy recommendations which will assist the large diversity of patients in need of the gift of life.”