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Key Points

  • There is a shortage of kidneys so that not everyone can have a transplant
  • Kidneys are allocated according to a points score based on factors including waiting time and tissue type match
  • If you have a rare tissue type, it reduces your chances of getting a transplant
    The average wait for a kidney transplant is about 3 years
  • Most people on the list for 5 years will get a kidney, and could get a transplant at any time if the tissue type match is perfect

The transplant waiting list

At present, not enough deceased kidneys are donated to meet the demand. Changes in seat-belt laws and improvements in medicine mean that fewer people now die from the accidents or illnesses that would have made them suitable donors.

People who are waiting for a deceased donor kidney are therefore put on a waiting list. Their details, including their blood group and tissue type, are put onto a national computer at NHS Blood and Transplant in Bristol. When surgeons remove two kidneys from a patient who has died, the details are sent to UKT, which finds the most suitable patients for the kidneys in the rest of the country. The matching scheme is run by computer and is rather complex. To read more Click here

Most people on the list for 5 years will get a kidney, and could get a transplant at any time if the tissue type match is perfect. It is important to note that these are average numbers – it can be two days, or ten years.

Suspension from the Transplant List

It may sometimes be necessary to take a patient off the transplant list, either temporarily or permanently. This may be done, for example, if someone develops a serious infection or a heart problem, or if they need a major operation. This decision is not made lightly. Any patient who is being removed from the list should be told about the decision and informed whether removal from the list is temporary or permanent. If a patient is unsure whether they are ‘on the list’, they should ask that someone checks direct with UKT (in case the local records are out of date). A user of Renal Patient View, the service that allows patients in some units to look at their results over the internet, the transplant list status will be available online. Suspended patients continue to accumulate points on the register.

Being ready for a transplant

People who are on the waiting list for a transplant may not be given very much notice that a kidney is available for them. So, they need to be prepared to go to the hospital at short notice. if you have a mobile phone, make sure the unit has your up to date details, especially if you change your mobile number/landline numbers.

When anyone is on the transplant waiting list, it is largely up to them to make themselves contactable at all times, day and night. If someone cannot be found, the kidney will be offered to someone else. When a person ‘gets the call’, they should make their way to the hospital at once, not have anything to eat or drink (in preparation for the anaesthetic) and take their medications.

Inequalities in Kidney allocation

Many people on dialysis who have been waiting for a long time for a kidney become concerned that they might have been treated unfairly. They may also wish to know if the chances of their getting a transplant are more or less zero, at least it would be easier to plan their lives knowing this.

Certainly not everyone is guaranteed a transplant. The kidney allocation system in the UK was changed in 2006, and has been updated several times since then. These changes have been made to try and give everyone an equal chance of receiving a transplant. However, this is not fully possible. There are two reasons why not. First, if you have a rare combination of tissue type and blood group, a good match may never come up. Since there is a shortage of kidneys, there may just always be several people in the country with a better match for every available kidney. This is particularly so for ethnic minorities in the UK, as many people have combinations of blood group and tissue type rare in whites. Furthermore, kidney failure is commoner and organ donation rarer in those of Asians and black ethnicity than in whites. No kidney is ever allocated according to the race of the donor or recipient, but UKT does monitor the chances people with rare tissue types have of getting a transplant, and modifies the allocation scheme to try and be as fair as possible.

The second reason why a transplant may not be possible is the presence of antibodies in the blood which react against other people’s kidneys. When some people are exposed to the tissue of others, by previous transplant, or pregnancy, or blood transfusion, they develop a strong reaction against the tissue types. Before any transplant is performed, the laboratory makes sure that there are no harmful antibodies, because they can cause immediate transplant failure. A few people have such strong antibodies (they are termed ‘highly sensitised’) that transplantation is virtually impossible. These antibodies may go away after a few years, but often just stay at the same level. The computer in Bristol has a record of the tissue types that are unacceptable for a patient, so that they will not get offered a kidney that they will have antibodies against. Someone who is hard to transplant because of antibodies should discuss their options with their own transplant unit, especially if they have a possible living kidney donor, and it may be possible to transplant them using newer techniques.

Contacting the donor family after transplantation

The donor family receive follow-up and any counselling required from the co-ordinators in the transplant unit. They will receive a letter of thanks from the hospital, in which a brief comment will be made on which organs have been transplanted and how the recipients are doing.

Over a period of time after the transplant, many recipients are keen to express their gratitude to the donor family, and the transplant co-ordinators will act as 'go betweens' for contact of this type.

The transplant co-ordinators may occasionally say that the donor family will not want any contact with the recipient, but are just satisfied with the knowledge that transplantation has taken place. In many cases, though, they will help to send a short letter of thanks, or a Christmas card, from the recipient to the donor family.

Maintaining confidentiality is a priority - the co-ordinators will never reveal the identity of the donor or recipient to the other without a long period of consultation. Only very rarely has it been positive for the transplant recipient and donor family to meet.

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The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.

More information about kidney transplants Click here