Before someone can become a donor, a series of thorough tests need to be done to ensure they are fit and healthy enough, physically and emotionally. The assessment includes a number of medical (physical) tests as well as a mental health assessment, and takes a number of months to complete.
In England, Wales and Northern Ireland the Human Tissue Act 2004, and in Scotland the Human Tissue (Scotland) Act 2006, provide the legal framework for organ and tissue donation in the UK. The Human Tissue Authority (HTA) regulates living donation and must approve any such donation. All donors have to be assessed by an Independent Assessor to ensure that all the legal requirements have been met. The law requires that the donor fully understands the nature and risks of the procedure and must not have been coerced, pressured or paid for the donation of the organ or part organ.
We did not interview any adults who had donated a part of their liver, lung or small bowel, so all the experiences in this summary are from kidney donors.The evaluation tests for living kidney donors include a full physical and psychological evaluation. Blood, urine and radiology tests are used to determine suitability for donation. A blood sample is taken to determine the donor’s blood type; tissue typing to check whether the donor and recipient are compatible. An ECG and a chest x-ray check for abnormalities of the heart and lungs. A review of all systems, previous illnesses and operations and family medical history is also carried out. Urine samples are taken to screen for kidney disease or any abnormalities, determine amongst other things the absence or presence of a urinary tract infection, and assess the amount of protein excreted in a 24-hour period.
The people we interviewed discussed the tests they needed to have before their donation was approved. Many had looked on the internet for information before speaking with a nurse or doctor. Those who were giving a kidney to a family member discussed the possibility first with medical staff at the transplant centre that their relative was being cared for. The first piece of information doctors needed to know was the donor’s blood group to see if it was compatible with the recipient.
Those people who were donating to someone outside the family visited their GP first or contacted their nearest hospital or transplant centre. Many of those we spoke to commented on how thorough the tests had been and that they’d felt reassured that the process was comprehensive. They could now be more confident about their health than if they had never become donors. Knowing that the tests had not detected any problems and that they were fit and healthy enough to donate a kidney was very positive news.
Margo, however, who had her tests over 13 years ago in America, said that when she was first tested, she wasn’t healthy enough to donate a kidney to her brother. Annabel said that one of the tests showed that she might have a problem with her liver. Further tests, though, showed that there was nothing wrong and she was able to continue with the process.
Some people we interviewed had to take time off work for the tests and, sometimes, this was inconvenient. Most transplant centres try to arrange the tests and investigations around a potential donor’s work schedule to minimise disruption to their job. It is sometimes possible to arrange for some of the tests to be done locally if the donor lives a long way from the transplant centre. Although no one suggested that they expected to be rewarded for what they had done, some people felt that they had perhaps expected to be treated with more consideration, for instance offered a meal when the tests kept them at the hospital for the whole day. One person commented on how expensive it was to park at the hospital.
Donors described what the tests had involved. Several had taken someone with them to a few of the appointments. Wallee donated a kidney to a friend and former colleague in Holland. He had some tests in England and two in Holland but said he couldn’t remember much about them. Most people found the tests straightforward and painless.
Many of the people we interviewed said that the assessment process had taken longer than they’d expected. For some, this had been an uncertain time, sometimes stressful. Annabel said she was expecting to have several tests on the one day but this did not happen and the process took about 16 months in total. A few people said that, with hindsight, they appreciated the length of time it had taken and saw it as a positive thing. It gave them plenty of time to think about the enormity of what they would be doing, though none of the donors we interviewed wavered in their decision during this time. Waiting for test results was also stressful for some, and several donors wished they’d been given the results sooner. Paul said it would have been helpful to have a report of the results but appreciated that NHS medical staff might not have had time for that. He couldn’t see why he needed a psychological assessment but accepted that it was a legal requirement.
Some people said that, because the assessment took longer than they had expected, shortly before surgery they had to have some re-tests to ensure they were still fit and healthy. Darren said that his daughter developed some complications, which meant he had to have some of the tests again.
Some donors we talked to were happy with the information they’d been given about the tests and surgery, but several would have liked more information about the assessment and the results.
Following approval, the name of a non-directed (anonymous) donor is put forward to a national allocation scheme and matched to a suitable recipient. This works in the same way as deceased donation, where a donor is matched to a patient on the national waiting list.