Donation and transplantation: plan 2021 to 2026

Priority Four – Increasing Living Donation and Reducing the Wait for a Kidney Transplant

Any individual in Scotland who would benefit from kidney transplantation should ideally have no or minimal time on dialysis. Ensuring early assessment for kidney transplantation will facilitate consideration for both deceased and living donor transplant and allows timely access to transplantation. While it will not be feasible for everyone, we want to encourage all those who need a kidney transplant to consider and explore options for a living donor transplant as their first transplant.

A living donor kidney transplant offers the best long-term graft and patient survival, with on average 89% of recipients of a living donor transplant still alive after ten years post-transplant, compared to about 76-78% of patients who received a deceased donor transplant^[5].

A Living Donor First Default and Transplant Decision Recording

4.1 It is important to make sure that all patients who may benefit from a kidney transplant are supported in exploring all options for a living donor transplant to improve their equity of access and achieve the best treatment outcome for them. As a result, Renal Units will be asked to make a living donor transplant the 'default' option for a first transplant for all patients (both adults and children) needing a kidney transplant so it can become the norm. We need to respect that some patients will not have anyone either willing or healthy enough to donate a kidney or they may feel strongly that they do not want their relatives or friends to put themselves at any risk by donating a kidney; it is of course vitally important that no one feels in any way pressured into becoming a living donor. However, it is legitimate that living donation should be the first option to be explored and encouraged before considering a deceased donor transplant.

Work is already underway to ensure all patients in Scotland approaching end-stage renal failure (the point at which they may either need a transplant or need to go on dialysis) have a documented decision about whether they are suitable for and want to proceed with a living and/or deceased donor transplant. They should also have had a referral for a treatment options education session. Data on this should be recorded and collected in comparable formats throughout Scotland. We will continue to work with Renal Units via the Living Donation Scotland Board to implement this and will monitor if this work is effective in increasing access to living donor transplants for those who typically so far have been less likely to receive one, such as patients in lower income groups and those from minority ethnic communities.

Education and Choices

4.2 We will also continue to provide high quality, accessible information to patients and their families about living kidney donation and other treatment alternatives. The living donation information packs and resources on the Organ Donation Scotland website have been well used by patients and Renal Unit staff. An information pack has also been distributed to General Practitioners to increase their awareness about living kidney donation options. Work is underway to develop an online living donor transplantation education resource for renal and transplant staff throughout Scotland, using the TURAS platform.

The Renal Education and Choices at Home (REACH) project is currently being trialled by NHS Lothian. The project involves home visits to people needing a transplant and their key family members to give them more information on living kidney donation. A few Renal Units have also been carrying out or looking into carrying out home visits. The coronavirus pandemic has required NHS Lothian to look at alternative models, such as exploring the potential for these visits to be done via video call. Subject to the evaluation of the NHS Lothian trial, if it is shown to increase living kidney donation we will seek to roll it out across Scotland to support and encourage open discussion within families and with close friends about choices.

Work has already begun to improve awareness of living kidney donation across the general population through publicity to increase understanding about both directed and non-directed (altruistic) donation. This work will continue into the new Action Plan period.

Providing guidance for NHS Boards on resourcing for Renal Units

4.3 To support the ambitions set out above, we recognise that increasing living donation will require Renal Units to undertake extra work, particularly to 'work up' potential living donors before they go to the relevant transplant unit, as well as to support the increasing numbers of patients who have received a transplant. While increasing living donation should over time help reduce the number of patients on dialysis and so the resources needed to support dialysis patients, the workload for units may still increase, particularly in the short to medium term. Therefore, we propose to ask the Living Donation Scotland Board to work with referring Renal Units and Transplant Centres to produce guidance for NHS Boards on recommended staffing levels to support living donation for differing levels of patient populations.

Improving access to kidney and liver transplantation

4.4 Work will continue to encourage all patients who have a relative or friend willing and healthy enough to donate them a kidney to use the UK Living Kidney Sharing Scheme (LKSS). This scheme allows patients to receive a living donor transplant if their donor is not a direct match for them. Even where the patient and their donor are a fairly good match, using the LKSS may provide the patient with a better long term outcome. This may be in the form of a better match or reduced sensitisation. Using the LKSS and involving altruistic donors in the chain of kidney 'swaps' can also provide the opportunity of a living donor transplant to patients on the deceased donor transplant waiting list who do not have their own living donor.

In addition, in line with the UK Strategy, we will support the Edinburgh Transplant Unit to increase awareness of living liver donation among patients. While this will not be appropriate for the majority of patients, where patients have someone willing and healthy enough to donate part of their liver, this may help enable those patients to access a transplant more quickly and so could help to reduce numbers of deaths on the waiting list.