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.

Coverage in Kidney Life magazine

 

The article below first appeared in Kidney Life Magazine, which can be accessed here.

Home- based living donor education – a new approach set to enhance the numbers of  living kidney donations from Black, Asian and Ethnic Minority communities.

By Dela Idowu

The search for a living donor is a stressful task for any patient with End Stage Renal Disease (ESRD).  However unique barriers such as complex family dynamics, cultural and religious beliefs make the task much harder for Black, Asian and Ethnic Minority (BAME) kidney patients. Despite the many potential benefits of living donor kidney transplantation (LDKT) it is an established fact that patients from BAME communities generally feel more of a reluctance to have the conversation about living kidney donation with their family members and friends. In an attempt to address this The Living Donor Kidney Transplantation 2020 Strategy Implementation group has set out a range of key objectives geared to increase access to LDKT and improve patient and family engagement in BAME communities.

Working in collaboration with NHSBT, Kidney Research UK and Gift of Living Donation (GOLD) The Access and Availability work stream group developed the first UK pilot LDKT Peer Educator home-based education programme. The Acceptance, Choice & Empowerment (ACE) intervention pilot was conducted at two transplant centres where there are substantially higher numbers of BAME patients with ESRD on the transplant waiting list.  The centres are University Hospitals Birmingham (UHB) and Guy’s and St Thomas Hospital (GSTT) London.  The uniqueness of the pilot is the use of a Peer Educator model which trained Peer Educator volunteers relevant to each BAME community, to conduct the home visits.

The ‘at home’ element of the intervention works in conjunction with existing clinic based-education to provide a more culturally sensitive, warmer and more relaxed approach to engaging and educating BAME patients and their families. The pilot scheme has met with the approval of patients, and has empowered many of them to take the initiative and invite family and friends to their home to talk about living kidney donation. It has also been welcomed by friends and family as it has increased their knowledge and understanding of living donation and the living donor process.

Renal and Transplant  team specialists were  also very keen to approve the home- based education programme at their transplant centres as the intervention  has been effective in increasing  access to living donor kidney transplants for BAME patients in America and the Netherlands. By adopting a new approach of reaching out to patients and their friends and family we are addressing an important as yet unmet need for BAME patients with ESRD.

As the founder of GOLD and having personal experience of living donation as a potential living donor for a loved one, I believe the introduction of a culturally tailored LDKT home- based education programme could see many lives being saved or at least greatly enhanced.

 

NBTA’s recommendations on 2015/ 2016 data report on organ donations and Transplantation for Black, Asian and Minority Ethnic communities

Recommendations from NBTA December 2016 NBTA’s recommendations on 2015/ 2016 data report on organ donations and Transplantation for Black, Asian and Minority Ethnic communities.

NBTA started publishing an annual data report on organ donation and transplantation for BAME communities, in partnership with NHSBT, since 2012. We welcome NHSBT’s decision to publish a similar data report, independently of NBTA, for the first time in 2016 and hope that this will now take place every year. The 2015/16 NHSBT report is published on the NHSBT web-site.

These recommendations on the 2016 data report are published by NBTA to encourage improvements in organ donation and transplantation among BAME communities in the UK. If you have any queries about the report please contact Kirit Modi (kiritmodi1@hotmail.com), in the first instance.

Organ Donor Register (ODR). While the increase in the actual number of registrants from BAME background in 2015/16 is welcome, the underrepresentation of BAME registrants continues and is a cause of concern. The 2015/16 ODR data suggests that Pakistani, Bangladeshi, Black Caribbean, Chinese andAfrican ethnicities are most poorly represented relative to the current UK population while Indian and Mixed Race ethnicities have the highest representation among BAME groups. Secondly, only 33% of registrants in 2015/16 had their ethnicity recorded and this also continues to be a concern.

Recommendation 1

That NHSBT, in partnership with NBTA, takes further steps to increase the proportion of registrants from BAME background on the ODR.

Recommendation 2

That NHSBT, in partnership with NBTA, has further discussions with its main ODR partners such as the DVLA, to get them to record the ethnicities of new registrants.

Deceased organ donors and transplant recipients The number of deceased BAME donors has gown down in 2015/16 (67 donors) compared to 2014/15 (80 donors). The ethnicity of the donors in 2015/16 comprises 40% Asian, 30% Black and 29% other. Overall only 5% of the deceased donors are from BAME background.

There has been an increase in the number of BAME transplant recipients in 2015/16 compared to 2014/15. Over the last five years the number of BAME transplant recipients has increased significantly from 498 in 2010/11 to 748 in 2015/16. Transplant recipients from BAME background now make up 22% of all transplant recipients.

It is clear from these figures that while the percentage of deceased donors from BAME background has remained largely unchanged, there has been a significant increase in the percentage of BAME transplant recipients. In short the gap between the two has increased.

Recommendation 3

Despite numerous activities by NHSBT, members of NBTA and others, the gap between the need for organs from BAME patients after death and the supply of such organs from BAME donors has increased. It is recommended that NHSBT, the four UK governments and NBTA review the current strategy for decreasing this gap.

Recommendation 4

The data related to the number of deceased donors and recipients is too general (e.g. using Asian as one of the main classifications instead of Indian etc. and no data on religion) and this needs to be addressed by NHSBT, in liaison with NBTA, so that a more targeted strategy can be developed.

Waiting list and waiting times

BAME groups represent around 11% of the UK population (2011 estimates). In contrast, at the end of 2015/16 financial year, 33% of the total number of patients on the waiting list for a kidney was from BAME background. This explains the longer waiting time for BAME kidney patients of around 3 years, compared to around 2.5 years for white patients.

Recommendation 5

NHSBT is requested to involve NBTA in the current review of the Kidney Allocation Scheme to achieve more equitable waiting times.

6. Living donors and recipients

There is fall in the number of living donors from BAME background in 2015/16 compared to 2014/15. This is worrying because this there was a fall in 2014/15 as well. The percentage of living donors is down to 13% of the total. The breakdown of the BAME living donors by ethnicity is Asian (52%), Black (21%) and Other (26%). NHSBT has stated that the reasons for this trend in the fall in the number of living donors two years in a row are not clear.

Recommendation 6

NHSBT should investigate the reasons for this downward trend in the number of living donors from BAME background.

Recommendation 7

While the recent initiative by NHSBT to commission NBTA to manage projects aimed at increasing BAME living donors is most welcome, this initiative should be sustained over a longer period than 18 months.

Recommendation 8

The data available on BAME living donors and recipients is too general for effective targeting of projects aimed at specific BAME communities and, similar to Recommendation 4, NHSBT should start discussions with NHS England and NBTA on how better data can be collected.

Consent rates (both consent and authorisation)

Overall consent rates have not substantially increased for white or BAME eligible donors over the last six years. Only about half as many families of BAME eligible donors agree to donation compared to white eligible donors. For DBD the 2015/16 figures are 74% white vs 35% BAME and for DCD it is 61% white vs 32% BAME. The Taking Transplantation to 2020 Strategy states that we need a “revolution” in consent rates in the UK, but there is no indication of that at present.

Recommendation 9

NHSBT and the four UK governments are urgently requested to review the current approach to increasing consent rates among BAME eligible donors and to discuss this with NBTA which has published ways in which this can be done in it BIG WINS for organs transplantation paper.

The 2015/16 data Organ Donation and Transplantation for BAME communities published by NHSBT raises a number of important issues which need consideration if the national targets set for 2020 for transplantation after death and living transplants are to be reached.

Recommendation 10

NHSBT and the four UK governments are urged to urgently consider this report and work in partnership with NBTA in exploring ways forward.

What can we do to address the drop in living kidney transplants in the UK?

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.

IMG_3968

Agi and Kirit at the House of Commons

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.

Conclusion

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.