The coordinating voice for Black, Asian, Mixed Race and Minority Ethnic transplant donation
Living Transplant Initiative

There are two ways in which organs can be donated; one is donation after death and the other is live donation. Live donations can be made by close family (including partners), friends as well as by strangers. However, live donations can only be made for certain organs and mostly involve donation of a kidney. Clearly there is a thorough and rigorous process to go through before anyone can make a live 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 live transplants, following a live donation, has gone down for two consecutive years in the UK. The actual figures published by NHS Blood and Transplant (NHSBT) recently 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 is a gap of 12%. The impact of this downward trend on the lives of patients waiting for a transplant is significant. This has happened despite the national strategy (Living Donor Kidney Transplantation 2020) being implemented by NHSBT and approved by the four UK governments since 2014.

Live 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 live transplants. This means we need to make progress on both live transplants and transplants after death to reduce the time kidney patients have to wait for a transplant.

The reasons for the number going down are complex and there will be a variety of views on this from different perspectives. I have set out below my personal views and highlighted reasons as well as actions needed to address this challenge.

Firstly, live transplants are not given sufficient priority by NHSBT compared to transplants after death. A recent example of this is that the national Organ Donation Week Campaign, starting today for a week, does not include live donations. There may be administrative reasons for this but, from a patient perspective, this is both unhelpful and unacceptable.

Secondly, there is significant variation in the number of live 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 live kidney transplants compared to all kidney transplants (both live and after death). The highest proportion of adult live 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. Greater transparency of the reasons for these variations should be provided both by all hospitals with a renal unit, the transplant centres and NHSBT. In addition, there is no evidence that NHSBT at present sufficiently challenges these unexplained variations.

Thirdly, the key staff who are responsible for live transplants in hospital are Organ Transplant Coordinators (OTCs) who are employed by the hospital trusts with renal units. This means that responsibility for live transplants largely rests at a local level. This has resulted in the number of OTCs employed by some hospitals being less than the recommended number; uncoordinated training for OTCs and, I believe, difficulties in replacing OTCs when they move jobs or are away for any reason. There is a strong case for NHSBT to directly employ OTCs. This already takes place for donations after death whereby Specialist Nurses for Organ Donation are directly employed by NHSBT.

Finally, patients waiting for a transplant are not provided with sufficient renal unit or transplant centre specific information to make informed choices about how its local provision compares with others. The patient voice can be powerful both at a local and national level so long as patients are empowered with the appropriate information in a user friendly format and encouraged to ask questions. This is the responsibility of both kidney patient charities and NHSBT.

In conclusion, we are currently not in a good position in relation to live donor transplants. The national strategy until 2020 was approved by the four UK governments and NHSBT but its implementation is unsatisfactory. Progress over the last two years has been poor and it is unlikely that we will reach the 2020 target of 1608 live transplants which is an increase of 49% (523 transplants) on the current figure. NHSBT and the four governments have time and opportunity to address this now so that we do not fail to meet the target set. I would also respectfully urge close families and friends of those waiting for kidney transplant, particularly those from Black, Asian and Minority Ethnic (BAME) background, to consider becoming a live donor if at all possible. It is also important to appreciate that many patients understandably find it very difficult to raise this sensitive issue with them.

Kirit Modi Kidney transplant recipient Previous Chairman of the National Kidney Federation (NKF) and previous cochair of the National BAME Transplant Alliance (NBTA)

This article is written in a personal capacity.