Live donor advocate project

The number of people needing a kidney transplant continues to grow each year although the amount of kidney organs available keeps relatively stable. Finding new ways to increase the number of organs available for transplant is a growing challenge. Increasing the number of live kidney donors is one of the main ways of achieving this.

It’s not always easy to find potential live donors. We know that patients can face considerable barriers such as:

Discomfort initiating a request of this kind
Apprehension asking someone directly if they will donate an organ
Not knowing enough about what happens in the whole live donation process

A leading American transplant centre found that some of these barriers could be overcome by offering patients additional help, specifically to identify and support a Live Donor Advocate. This is a person identified by you who will help you in finding a potential donor and who will be supported by us with training, educational materials, business cards and other resources. The aim is to enable the Live Donor Advocate to become confident in starting conversations and increasing awareness about kidney disease and the possibility of live donation.

How to find a Live Donor Advocate?

A live donor Advocate can be anyone who wants to help you find a suitable donor. They are often a spouse or partner but they can be other members of the family or friends. They are often someone who has already given a kidney or who cannot give one due to medical reasons. Our only requirement is that they be at least 18 years of age and able to come to our discussion meetings. If you cannot identify a live donor advocate we may be able to pair you with someone who can act as your advocate.

How we will support you and the Live Donor Advocate

Six education and discussion groups will be held, one each month.
Each discussion group will take about 2 hours of your time.
A new topic will be covered during each meeting geared to helping the Live Donor Advocate and their patient identify and approach suitable live donors.
Using the help and information we will share, each live donor advocate and their patient will begin approaching potential live donors.
We will ask you and the live donor advocate to keep a monthly record of your progress so we can identify what worked well and what further help you might need.

Are any risks associated with the program?

There are no medical risks associated with the program. We will be discussing sensitive subjects at the meetings, and some participants might feel uncomfortable. We will encourage every participant to keep the meeting discussions confidential, and only participants and staff members will be at the meetings. You may decline participation at any time if you feel uncomfortable or no longer wish to attend the sessions. We are looking to run the first sessions from April onwards in 2017.