This article was originally published in The Voice.
Our community can transform the health of people in desperate need of an organ transplant. So why aren’t more of us coming forward to help?
Written by Vic Motune
09/09/2017 07:00 AM
SUPPORT: Dela Idowu with her brother Tayo, who received an organ donation in 2014.
A FAMILY member, friend, or any of us may need a transplant at any time.
People waiting for transplants so they can continue living rely on others being willing to donate their organs. And donors from the same ethnic background as the patient are more likely to be a successful match.
But only 25 per cent of people from black and minority ethnic (BAME) communities have told their family they want to be an organ donor compared with almost half (49 per cent) of all adults in England.
In response health campaigners are urging BAME people to consid- er becoming living donors instead.
African Caribbeans are more likely to suffer from the illnesses that cause organ failure such as hypertension and diabetes. So why aren’t we coming forward? Mistrust of the medical profession, fear that donated organs will somehow be used in scientific experiments, or be sold illegally and religious beliefs are just some of the reasons uncovered by The Voice in a straw poll.
The fact that loved ones and others in our community who need an organ suffer and die needlessly is heartbreaking. Each of us has the power to give the gift of life by signing up as an organ donor.
Black families’ reluctance to talk about organ donation is contributing to deaths among black people waiting for a transplant, according to health campaigners. The warning came at the start of Organ Donation Week on Monday (September 4).
According to a survey by NHS Blood and Transplant, only 25 per cent of black people have told their family they want to be an organ donor compared with almost half (49 per cent) of all adults in England.
Although many black and minority ethnic (BAME) patients are able to receive a transplant from a white donor, for many, the best match will come from a donor from the same ethnic background because of the similarity of blood and tissue types.
The fact that black people are currently under-represented as blood and organ donors means BAME people waiting for kidney transplants, for example, have to wait a year longer because of the lack of donors. Over the past decade, medical professionals and health campaigners in the UK have urged ethnic minority communities to help end a serious shortage of organ donations.
But they face an uphill struggle in getting this important health message across. Among some of the key reasons uncovered by The Voice as to why black people don’t donate include a fear that their organs might be used for medical experiments.
Several of the people we spoke to claimed that history is overrun with examples of black bodies exploited in the name of ‘science’. There was also concern that once medical professionals find out that you are an organ donor they may not try as hard to save your life if you are seriously ill.
Idowu’s film We Are Family
Among the other issues were objections to organ donation on religious grounds, a deep-seated fear of the bureaucracy involved in the process, and concern expressed by some individuals that their organs would not be usable due to high blood pressure, heart disease and other prevalent illnesses in the black community.
These concerns have raised the question of whether a different type of approach to en- couraging people from BAME communities is needed. Orin Lewis, of the African Caribbean Leukaemia Trust (ACLT), believes this is necessary.
Lewis told The Voice: “Many of these issues are ones that we at the ACLT have come across before and these concerns are real in people’s minds. What it comes down to is the need to build trust before you get the message of organ donation across, and that’s where organisations like the ACLT have been crucial in building a dialogue and engagement with BAME communities.”
He comtinued: “But we also have to realise that change starts with us because the need for more black blood, organ and stem cell donors can’t be emphasised enough. And the fact that it is our responsibility to start challenging these myths is a message we push when we are out at events such as Carnival.”
However, Lewis is confident that he is beginning to see attitudes change. “It’s a slow burner, there are still barriers but we are getting the message across to the various generations who are beginning to understand that it could be their family member who is affected.”
“More of our community have joined the organ donation register and we are working on new ways of getting the message out there including ways of becoming a living donor.” One person who decided to take the step and become a living donor was Dela Idowu.
She decided to act when her older brother Tayo, 56, was diagnosed with kidney failure in December 2011. Following a nine month process of extensive medical tests and consultations, doctors advised her against becoming a donor because of the possible complications to her own health.
Thankfully, however, Tayo received an organ donation in October 2014. Although Idowu was disappointed about not being able to become a donor to her brother, she wrote a book about the experience, More Than A Match, to help others who were also thinking about becoming living donors, as well as founding an organisation called Gift Of Living Donation (GOLD).
She also produced a film called We Are Family, pictured right. It tells the story of an African Caribbean family, the Williams, who face an emotional rollercoaster to try to save the life of a loved one diagnosed with kidney failure. The decision to make the film was inspired by what she felt was a need to find more crea- tive ways to engage African and Caribbean audiences on this issue.
Despite never having made a film before, Idowu recalls she was driven by her desire to make a difference to people like her brother who needed a transplant. She said: “There are so many reasons why black people don’t donate organs but the one thing that stood out for me was the lack of information.
“A lot of organ donation campaigns aimed at the black community are asking them to do something they really don’t know much about.” Idowu continued: “For me, the big question was, ‘How can we change people’s perception and thinking?’ Then the idea to do a film just popped into my head. Knowing how much black people love to watch films I thought, ‘Why not use film, something visual, as a way of communicating this message?’ I’d never made a film before but the passion I have to improve people’s lives made me go forward.
“It’s something different, innovative and culturally relevant to our community. Once you give people information that they can relate to and there’s somebody there who can answer their questions, things will change.”
She added: “It might not be a huge change at first, but things will slowly change as more people talk to their families about the issues.”
Angela Ditchfield, diversity lead nurse at NHS Blood and Transplant, agreed with Lewis on the need to build a relationship of trust with BAME communities on the issue.
She told The Voice: “Black and Asian community groups we are working with have advised us that the only way to increase the numbers of donors from black and Asian communities and reduce waiting times for BAME patients is through sustained community engagement.”
“NHS Blood and Transplant, along with our community partners, has undertaken a number of projects to address the situation, from being an active participant in the National Black, Asian and Minority Ethnic Transplant Alliance, to ensuring that the UK became the first country in the world to develop and instigate a Faith Action Plan.”
Ditchfield added: “Other initiatives include peer education programmes, translating leaflets into a range of languages, developing specific black and Asian campaigns and initiatives for both mainstream and black and Asian press, working with MPs who represent constituencies with a high black or Asian population.”
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NBTA response to NHSBT report on organ donation and transplantation in Black and Ethnic Minority Communities
The National Black, Asian and Minority Ethnic Transplant Alliance (NBTA) welcomes this supplementary report (from the annual Organ Donation and Transplant Activity Report) specifically on organ donation and transplantation in Black and Ethnic Minority Communities, which reflects the particular need for more donors from minority communities, and the resulting disadvantages experienced by BAME patients.
The two 2020 strategies for deceased and living transplantation were published by NHSBT and the four UK governments. For clarification purposes, Organ donation is split between deceased and living domains and NHSBT which is responsible for the professional support to clinical teams in hospitals and for the successful National Living Donor Sharing Scheme, whilst NHS England and other commissioners commission Living Donation and Transplantation across the UK.
However, despite the overall national 3.6% year on year increase on transplants and registrants including 6.8% from BAME communities, the NBTA has deep concerns about the state of the nation in relation to BAME living and deceased registrations, and the demonstrative gap between the need for kidney transplantation (34%) and the number of kidney transplants (28%) taking place for BAME patients. Most worryingly, the family consent rate for deceased donation among BAME families remains significantly low.
For various personal, cultural, religious and historical reasons many BAME individuals and families have generation after generation rigidly resisted registering as deceased or living organ donors let alone consenting to actual transplantation of organs of their loved ones. NBTA and NHSBT also acknowledge that apathy and low prioritisation of the subject matter of organ donation is highly prevalent in various BAME Communities as well as within the majority UK white populace.
The overall lack of significant increases in registration and consent/authorisation rates presents a visibly disturbing organ donation landscape. NBTA along with NHS Blood and Transplant (NHSBT) and other stakeholders recognises that there is a substantial body of educational and awareness work that needs to be undertaken with key BAME Community/Cultural/Religious influencers and gatekeepers in order to gain the trust and respect of individuals and families from the very diverse Black and Ethnic Minority Communities.
NBTA believes that important but in hindsight minor steps towards changing attitudes and behaviour have been instigated in previous years by ground breaking initiatives such as Kidney Research UK’s Peer Educators Projects, ACLT’s Peer to Peer school Mentoring & Giving the Gift of Life projects, Seventh Day Adventist’s Family Circle project, Amjid Ali’s Transplantation within the framework of Sharia research work, Gift of Living Donation (GOLD) Home based educational intervention project, South Asian health action charity’s specific Hindus, Sikhs and Muslims Embrace Organ donation campaign and Upahaar’s Live Life Give Life South Asian Stem Cell and organ donation campaign
etc. These examples and more have provided various methodologies that need to be built on to develop and test solutions and to be able to identify the lessons for implementation for others to follow.
Indeed NHSBT’s recently commissioned project such as the Living Transplant Initiative and previously commissioned Faith and Organ Donation Action Plan demonstrated that there needs to be a step-change in the approach to community engagement, whereby the communities are co-designing and leading the community engagement. However more significant resource investment towards changing the “Messenger rather than the Message” is urgently required in order to change the continuing status quo and lack of inertia especially from Pakistani, Bangladeshi, Black Caribbean, Chinese and African ethnicities as they are the most poorly represented on the ODR relative to the BAME organ donation demand and current UK population. In other words, to understand and tackle the current disparity in the BAME community between donating and receiving organs, NBTA members along with other associated BAME strategic influencers should be resource invested and entrusted by Commissioning organisations such as NHSBT and other key stakeholders such as the Department of Health to redeveloping and implementing a national strategy for raising awareness amongst all major BAME communities. This will be in order to instil a higher level of trust via personal, cultural and religious empathy culminating effective engagement with BAME potential donors and patient families. This is an urgent call to action from NBTA to ensure equity in organ donation.
Kirit Modi, Life Vice President, National Kidney Federation (NKF)
This article is a summary of a presentation to the All Party Parliamentary Kidney Group in the House of Commons on 7 December 2016.
There are two ways in which kidneys can be donated; one is donation after death and the other is a live donation. Live kidney donations can be made by close family (including partners), friends as well as by strangers. There is a wellestablished rigorous process to go through before anyone can make a live kidney donation and not everyone wishing to make such a donation is able to do so. The selling of organs is, of course, both illegal and immoral.
The number of living transplants, mostly kidneys, following a live donation, has gone down for two consecutive years in the UK. The actual figures published by NHS Blood and Transplant (NHSBT) are worrying. The number of these transplants in 2015/16 was 1075 compared to the target of 1223; i.e. a shortfall of 148 transplants which means there was a gap of 12%. In addition it is highly unlikely that we will reach the 2020 target of 1608 living transplants which is an increase of 49% (523 transplants) on the current figure.
This has happened in the context of the national strategy (Living Donor Kidney Transplantation 2020) published by the four UK governments and NHSBT since 2014. NHSBT and the four governments have time and opportunity to address this now so that we do not fail to meet the 2020 target. The impact of this downward trend on the lives of patients waiting for a kidney transplant is very significant.
Living kidney transplants make a significant contribution to the overall number of kidney transplants. 2015/16 figures show that nearly a third of the adult kidney transplants were living transplants and around two thirds are transplants resulting from a donation after death. This means we need to make progress on both live donations as well as donations after death to reduce the time kidney patients have to wait for a transplant.
The reasons for the number of live kidney donations going down are complex and there will be a variety of views on this from different perspectives. I have highlighted some reasons below and am requesting the APPKG for its help in addressing them.
Firstly, the overall responsibility to ensure that the targets set in the LDTS 2020 strategy rests with the Implementation Oversight Group which has representation from all four UK governments, NHSBT and others.
The APPKG is requested to write to the Chair of the Implementation Oversight Group to explain the reasons for the drop in the number of live kidney donations over the last two years and to outline what steps it is taking to ensure that the targets set for 2020 in the Strategy are met.
Secondly, there is significant variation in the number of living transplants taking place in the transplant centres across the UK. While some variation is inevitable and can be explained, there seems to be unexplained variation. One measure is the proportion of living kidney transplants compared to all kidney transplants (both living and after death). The highest proportion of adult living transplants in 2015/16 took place at Belfast (57%), Coventry (53%) and Newcastle (41%) while the lowest proportions were at Nottingham (20%) and North West London (21%). Each transplant centre covers a region and potential live donors are first seen by all hospitals with a renal unit. NHSBT has recently started work to address these variations including publication of centre- specific information, regional learning events and peer review with specific indicators linked to living transplants. This is a welcome development. However, it is important to publish the outcome from these developments as well as its impact on reducing variations as soon as possible so that good practice can be established throughout the country.
The APPKG is requested to write to the Chief Executive of NHSBT to report fully on the outcome and the impact of the actions being taken to reduce variations in living transplants among centres by March 2017.
Thirdly, key staff responsible for living transplants in hospital are the Organ Transplant Coordinators (OTCs) who are employed by the hospital trusts with renal units. This means that responsibility for living transplants largely rests at a local level. This has resulted in the number of OTCs employed by some hospitals being less than the number indicated by using the workforce calculator produced by NHSBT. In addition, the training available to OTCs is not coordinated at a national level. There is a strong case for NHSBT directly employing all OTCs. This already takes place for donations after death whereby Specialist Nurses for Organ Donation are directly employed by NHSBT.
The APPKG is requested to write to the Chief Executives of NHS England and NHSBT to review the current arrangements for employing OTCs to improve staffing levels and training arrangements.
Finally, the commissioning of living donor kidney transplantation is currently being reviewed with a view to introducing new arrangements from April 2017. There is a unique opportunity now to use this review to introduce commissioning arrangements to set benchmarks to promote good practice and allocate funding when centres reach these benchmarks.
The APPKG is requested to write to the Chief Executive of NHS England asking him to provide details of how the new commissioning arrangements will help address the drop in living transplants and ensure that the target set in the Living Donor Kidney Transplantation Strategy 2020 is met.
We are currently not in a good position in relation to live donor transplants in the UK. There is time and opportunity to change this and take action so that the targets set for 2020 are met. Clearly this needs a strong commitment to take action by those responsible for the implementation of the Strategy. The APPKG is in a unique position to make a significant contribution and I very much hope that they will support the requests outlined in this article.