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Government campaign will focus on urgent shortage of black, Asian and minority ethnic organ donors

18 July 2018

A rising proportion of people who die in need of a transplant is from a black, Asian or ethnic minority background despite more families in these communities supporting organ donation.

Figures from NHS Blood and Transplant show that 21 percent of people who died on the waiting list last year was from a black, Asian or ethnic minority background compared with 15 percent a decade ago (1).

Today the Government announces a new campaign in England to address the urgent need for donors revealed in NHS Blood and Transplant’s annual report into organ donation in black, Asian and minority ethnic communities.

The campaign aims to increase donation rates by raising awareness and breaking down barriers to donation within these communities. The Government has commissioned NHS Blood and Transplant to deliver the campaign with support from the National BAME Transplant Alliance (NBTA).

Health Minister Jackie Doyle-Price said: “I am delighted that this year more people than ever from black, Asian and minority ethnic backgrounds have received life-saving transplants. This shows great progress, but the fact remains that if you are from any one of these communities you are more likely to need a transplant, for the simple reason that you are more likely to suffer from a disease that requires a transplant. At the same time, you are less likely to get a transplant than if you were white.

“The campaign we are launching today will be a driving force to save more lives. The Government, MPs, faith leaders, charities, campaigners, influencers, friends and families, all have a role to play to address myths and barriers and bring attention to the lifesaving power of donation.

“Our project will include a community investment scheme to enable local groups to deliver this vital work. For now, I would ask on behalf of everyone who has received a transplant, and everyone who is waiting for the life-changing news that an organ has been found - sign up to donate and give the gift of life.”

Aari PatelThe parents of a three-year-old boy who saved the lives of two children through organ donation are urging more black, Asian and ethnic minority families to support donation. Aari Patel died in 2016 following an accident at home. His parents Jay and Sina asked at the hospital whether their son could be an organ donor.

“The doctors were surprised we raised donation before being asked. But if Aari couldn’t be helped any further, Sina and I felt strongly that we wanted Aari to help others. We did not want another family to suffer losing their child or loved one,” said Jay, from Croydon.

“We received a letter informing us Aari’s organs had saved the lives of a boy and a girl. Aari was our shining star, and it is an enormous comfort to know he helped those two children.”

Jay added: “Too many people say no to donation because they think their faith prevents it. There are myths and misunderstandings. We must talk more about the subject with those we love, family and friends, young and old. If more people in our communities supported organ donation, more lives in our communities would be saved.”

The NHS Blood and Transplant report reveals only seven percent - 114 - of donors last year were from black, Asian and ethnic minority backgrounds. This figure is increasing however, thanks to more black, Asian and ethnic minority families saying yes to donation when asked in hospitals (2).

But family refusal continues to be the biggest obstacle to organ donation among these communities. Only around half as many families support organ donation compared with families from a white background (3).

Anthony Clarkson from NHS Blood and Transplant said: “While it is encouraging that more black, Asian and ethnic minority families are supporting donation - making more lifesaving transplants possible - change is not happening fast enough and too many lives are being lost.

“Although many black, Asian and ethnic minority patients are able to receive a transplant from a white donor, others may die if there is no donor from their own community.

“We are asking more people from these communities to talk about organ donation and share their donation decision with their families. Words save lives.”

NBTA Co-Chairs Kirit Mistry and Orin Lewis said: “On behalf of our members we welcome the Government’s commitment to launching a campaign to increase organ donors from black, Asian and ethnic minority communities.

“We are also encouraged to be given the opportunity to work in partnership to engage recipients, donors, communities, organisations, and stakeholders to help shape this campaign from a culturally and faith-based sensitive perspective.

“NBTA as the co-ordinated voice for black, Asian, mixed race and minority ethnic communities in transplant donation will help to build trust and create dialogue to inform our communities of the need for more organ donors from these backgrounds, and spread the message of organ donation is a gift of life so help save more lives.”

NHS Blood and Transplant can reassure people:

  • It is always the priority of the treating medical team to save a patient’s life. It is only when the treating medical team in the hospital and the family have accepted that no further treatment can help, and it is not in the patient’s best interest, that end of life care choices are considered.
  • If someone has registered a decision to donate on the NHS Organ Donor Register, or if deemed consent applies in Wales, this information is shared with family members and the family are asked to support donation going ahead. If the patient has not registered a decision to donate, family members will be asked to make a decision on their relative’s behalf.
  • The major religions in the UK support the idea of organ donation and transplantation.
  • Organ donation is a highly controlled area and is regulated by the Human Tissue Authority. The sale of human organs or tissue is illegal in the UK.

The full report into organ donation for black, Asian and minority ethnic communities in 2017/18 can be viewed https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/11669/bame-organ-donation-and-transplantation-data-2017-18.pdf. This report will be published on Wednesday, July 18th.

Please join the NHS Organ Donor Register at www.organdonation.nhs.uk

 

Photo: Aari Patel. Further photos available on request.

 

Ends

  1. Of the 427 patients who died on the transplant list in 2017/18, 89 were BAME. In 2007/08 these figures were 623 and 96 respectively. The deaths figure includes people who died while on the active transplant waiting list or died within a year of being removed from the list. Statistics for deaths on the waiting list do not appear in the NHS Blood and Transplant UK Transplant Activity Report 2017/18 for black, Asian and minority ethnic communities.
  2. In 2017/18 there was seven percent increase in consent rate among the families of potential BAME donors compared with 2016/17.
  3. In 2017/18 the consent rate was 42% for families of BAME potential donors and 69% for families of white potential donors

Notes to Editors:

  • For additional information please call the NHSBT Press Office on 01923 367 600 or email pressoffice@nhsbt.nhs.uk
  • For out of hours enquiries please call: 0117 969 2444

The campaign

Health Minister Jackie Doyle-Price has agreed NHS Blood and Transplant’s campaign plan to promote donation in black and Asian communities in 2018/19. The campaign will encourage families to talk about organ donation. It will include:

  • Paid media partnerships to reach young people from black, Asian and ethnic minority backgrounds through channels they trust with content they will engage with
  • A community investment scheme so that trusted community-based organisations can access funding to positively engage local communities in organ donation and address myths and barriers
  • Work with faith leaders to improve materials that explain a faith’s stance on organ donation
  • A production of content for use by NHS Blood and Transplant, charities, campaigners and community organisations that tell powerful stories of organ donors and transplant patients from black and Asian communities.

Press Release Notes

  • NHS Blood and Transplant (NHSBT) is a joint England and Wales Special Health Authority. Its remit includes the provision of a reliable, efficient supply of blood and associated services to the NHS in England. It is also the organ donor organisation for the whole of the UK and is responsible for matching and allocating donated organs.
  • Three out of 10 people (30.6% at 31 March 2018) waiting for a transplant across the UK are from a black, Asian or minority ethnic background. 35% of people waiting for a kidney in 2017/18 were from these backgrounds. These patients wait significantly longer for a kidney transplant than white patients - approximately two and a half years compared with two years.
  • Last year 22.5% (901) of transplant recipients were from a black, Asian or ethnic minority background compared with 20.2% (706) five years earlier.
  • Last year 7.3% of all donors were from a BAME background (a total of 114 donors - Asian donors: 37, black donors: 25, donors from other ethnic minorities: 52). This figure is increasing and compares to 5.6% five years ago. However there remains a pressing need for more BAME donors because black and Asian people are more at risk of illnesses that require a transplant, such as diabetes. Kidneys are matched by blood group and tissue type, and people from the same ethnic background are more likely to have matching blood groups and tissue types. For other organs there is a need to match blood groups, but less or no requirement to match tissue types.
  • Black, Asian and ethnic minority communities make up 11 percent of the UK population according to 2011 figures from the Office of National Statistics.