Kidney Research UK

Background

Founded in 1961, Kidney Research UK (formerly the National Kidney Research Fund) is the largest funder of research into the prevention, treatment and management of kidney disease. Our mission is to improve the quality of life of those with kidney disorders and to increase public awareness of kidney health.

Transplantation is the most cost-effective form of treatment for those with end stage renal failure and gives patients the best chance of rehabilitation. We are therefore committed to helping improve the organ donation rate and increasing the number of patients who can be treated with a viable transplant.

Transplantation

Patients that experience complete kidney failure require lifelong dialysis treatment or a transplant in order to survive. Transplants are the optimum treatment in terms of survival, rehabilitation, quality of life, and cost, for a significant minority of patients on dialysis.

Unfortunately, waiting lists for transplants of all types continue to increase in almost every country, including the UK. This means many people who could benefit from a transplant, remain on dialysis.

The number of transplants carried out in the UK depends on the rate of organ donation, which fell significantly during the 1990's and remains far below the rate of demand for transplants. Each year, only 1 in 4 of these people on the transplant waiting list gets the kidney they need and this situation is set to get worse because of an ageing population and the rise in the numbers of people with kidney disease. Research has shown that although there are only around 20% of the population are on the organ donor register, around 70% of people in the UK are in favour of organ donation. This paradox is difficult to understand.

Organ Donation

The Human Tissue Act of 2004 was intended to improve legislation around the removal, storage, use and disposal of human tissue and organs. Kidney Research UK played an active role in its development, as it carried significant implications for organ donation and kidney transplantation.

The Act sought to clarify the issues of removal and retention of organs and tissue and to rebuild public confidence in the process. This followed a number of highly publicised cases of children's organs being removed without consent and retained after autopsy to establish the cause of death.

The purpose of this was to set out the Act law of consent to donate, giving priority to the wishes of donors and not to their relatives. Currently the wishes of one in ten people who have registered to donate are overruled by their families, denying hundreds of patients the chance of a transplant.

The new Act, which came into force in September 2006, makes it clear that if someone wanted to donate, their wishes should be respected.

However, if the family or those close to a person who has died object to their donation, for whatever reason, healthcare professionals are required to discuss the matter sensitively with them and encourage them to respect the deceased's wishes.

Improving Donation Rates

Kidney Research UK believe that more needs to be done to improve organ donation rates in the UK, and that there are lessons to be learned from other European countries, such as Spain and Norway, whose organ donation rates have risen steadily over the last 10 years to a level that is now twice that of the UK. In Spain organ donation rates increased after the introduction of a system of presumed consent, which was part of a number of initiatives.

We support a soft system of presumed consent, a view supported by the majority of the public. This system presumes that a person's organs can be taken for transplantation unless he or she registers their desire to "opt out". Relatives would still be consulted in case they felt that the patient may have objected to donation or would themselves be particularly distressed by the removal of organs.

Presumed consent is not the complete answer and should be seen as only one of a number of measures that should be introduced to boost organ donation rates. This set of measures include (i) more intensive care beds, (ii) transplant coordinators in every hospital, (iii) an efficient system in hospitals of auditing potential donors and (iv) effective public communication and education programmes to raise awareness of the need for more organ donors.

In addition, we would like to see greater use of older donors, non-heart beating donors and living donors, including both related and non-related donation. However, we do not believe that compensating people for donating an organ, over and above expenses, is the correct approach to increasing this living donation.

Other Sources of Organs for Transplantation

Another source of organs for transplantation is from animals. Despite advances in this area of xenotransplantation, much more research is required before the use of animal organs for humans.

Kidney Research UK urges more people to sign up to the organ donor register to increase the chances of kidney patients receiving a transplant.

However, the charity does not believe that the buying and selling of organs is the right answer to addressing the need, and indeed, warns against any kidney patient considering this option. In the case of organs being obtained from abroad, patients run the risk of picking up infections such as HIV and Hepatitis. In addition, surgical procedures may not be subject to the same regulations found in the UK.

Kidney Research UK

April 2007