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.
We are pleased to invite any organisation interested in increasing Living Transplants within the BAME communities to submit a bid to NBTA. This is an initiative funded by NHSBT and NBTA has been commissioned to manage its delivery. The LTI has very clear outcomes; the key outcome is increasing the number of living transplants from BAME communities by ten by March 2018.
NBTA has been allocated up to £90k for this Initiative by NHSBT up to 31 March 2018. The main reasons for this Initiative are because the number of living transplants has decreased over the last two years and because there has been limited promotion of BAME living transplants in the UK.
Details for bidding:
- Guidance for submitting a bid to increase living transplants
- Pro forma for submitting bids
- NHSBT proposal on Living Transplants
The timescales for bidding are as follows:
- Announcement by NBTA to invite bids: 31 October 2016
- Submission of bids to NBTA: 9 December 2016
- Decision by the NBTA Steering Group on the outcome of bids: 15 December 2016
- Projects commence: Early in 2017.
This is the first phase of seeking bids and, subject to the availability of funding, NBTA intends to announce a second phase of bidding in 2017. Priority will be given to bids covering specific geographical parts of London and Leicester and those targeted at specific BAME communities. These are set out clearly in the Guidance document. However, bids from anywhere in the country and targeted at any BAME community will be considered against the ten criteria set out in the Guidance document.
NBTA is keen to encourage bids from individual organisations as well as joint bids from organisations working in partnership. We would also welcome innovative bids which contribute to the three key targets and the six barriers identified in the Guidance document.
Further information about bidding can be obtained by contacting Kirit Modi at email@example.com and completed bids should also be sent to him by 9 December 2016.
The National Black, Asian and Minority Ethnic Transplant Alliance (NBTA) is a forum of organisations, set up by the Department of Health, who work together on behalf of Black, Asian and Minority Ethnic (BAME) patients and communities. NBTA’s aims to address the disproportionality in stem cell, blood and organ donation through raising awareness of inequalities, promoting the importance of transplantation; with the aim of increasing the number of BAME donor registrations and consent to transplantation.
This press release is the NBTA’s response to the released 1 st September report NHS Blood and Transplant Organ Donation and Transplantation data for Black, Asian and Minority Ethnic (BAME) communities. This supplementary report of the released 1 st September Organ Donation and Transplantation Activity Report 2015/16 highlights the continuing struggle by all associated organisational, cultural, religious and public stakeholders in increasing the number of Organ related registrants, consenting individuals/families leading ultimately to increased levels of transplants.
While the overall UK national consent rates have risen slightly, there still remains a significant gap between the proportion of white families agreeing to donate and those from Black, Asian or other minority ethnic communities. This BAME Report indicates that more radical measures need to be undertaken by NHS Blood and Transplant and its stakeholders to reverse the overall widening negative chances of a BAME patient receiving a lifesaving transplant in comparison with their white counterparts.
To address this growing problem it is necessary that NHSBT works even more closely with the NBTA and its member organisations in order to achieving the ultimate outcome of more registrants and consenting donors, and to evolve the learnings of successful projects like Kidney Research UK’s Birmingham Peer Educators, ACLT’s Being African Caribbean stem cell; Giving the Gift of Life and Derby and Leicester Organ Donation Committees Community Link BAME Community Ambassadors initiatives, etc.
The BAME communities are historically and culturally more inquisitive of the medical processes and background involved in donation and transplantation of all kinds (stem cell, blood and organ), and the awareness cycle has been of a much more recent timeline in comparison of the equivalent generations of their white counterpoints. That is however not to say that there are some high levels of apathy, common within all races, which in certain BAME communities needs to be continuously addressed. One particular and potential ray of light is the need for more focus on Living Organ Donation. This form of donation such as a kidney is a relatively easier selling point or buy in for certain BAME people as it does not impinge directly on sensitive religious and social etiquette. Because of the high levels of blood and tissue matching, the educational awareness campaigns will have to emphasise the importance of racial/ethnic matching. As the success of the BAME (African, African Caribbean, and Hindu) stem cell initiatives of the last 20 years have shown, this key factor of pride and importance of an individual’s racial background becomes even more of a positive tipping point to registering and consenting to donate.
NBTA believes that NHSBT should focus on more living kidney donation and areas/communities where there is the greatest need and/or potential, which should also be in line with the main Metropolitan cities where large BAME populations reside in the UK.
The NBTA has actively supported the NHSBT initiatives such as the following:
- Saving and Improving Lives Strategic Plan 2015-2020 June 2015 (Increase BAME Community Awareness of the need for donation, to benefit their own communities and provide better support for people in these communities to donate).
- Behaviour Change Strategy implementation (A strategy for delivering a revolution in public behaviour in relation to organ donation by 23red March 2014) ;
- Recommendations from the Optimisa Research on BAME Organ Donation 2014 (Gaining a deeper understanding of attitudes, cultural and lifestyle influences and behaviours towards organ donation within BAME Communities in UK). NBTA already works on the principles identified by Optimisa which is to Inform, Encourage, Include and Empower.
- Faith Engagement and Organ Donation Action Plan (Professor Gurch Randhawa December 2013).
The NBTA believes that the despite the above initiatives that there is still much work to do to address the health inequalities experienced by black and minority ethnic people in need of transplants. The coordinated approach of more NHSBT commissioned NBTA living donor awareness initiatives will address the inequality in donation and transplantation for BAME communities, and aim to widen the impact of effective practices that improve and save lives.
The overall outcome for focusing on BAME living donation work is to close the gap between black and minority ethnic communities and white communities in securing transplants at the same time as securing savings to the NHS on the costs of healthcare. To reach these goals the outcomes NBTA will deliver:
- Better awareness amongst BAME communities of health inequalities and the need for donation
- More collaborative working, and sharing of best practice amongst organisations including NHS Blood and Transplant working on donation and transplant to improve health outcomes for BAME communities
- Incremental change in the numbers of BAME people represented on donation registers and agreeing to transplantation.
- Collation of resources of effective interventions and materials on donation and transplant issues with BAME communities
- Behaviour change and increased BAME and Faith Community Engagement.
In summary, the above NBTA proposal(s) will make a significant difference in terms of transplants for those in the BAME community.
For more information on the NBTA please visit www.nbta-uk.org.uk/ and for press interviews please contact either of the following:
Orin Lewis OBE (Co-Chair of the NBTA)
firstname.lastname@example.org 020 3757 7700
Kirit Mistry (Co-Chair of the NBTA)
K.Mistry@derby.ac.uk 07940 516666