If you would like to discuss your kidney diagnosis with our trained members of staff ring the free to call number 0800 169 0936

The NKF Helpline is available Monday to Thursday 08:30am - 5:00pm Friday 08.30am – 12.30pm on 0800 169 09 36 or email [email protected].

Key Points

• The number of people waiting for a kidney transplant exceeds the number of donated organs each year
• 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 may increase the waiting time for a transplant
• The average wait for a kidney transplant is about 2-3 years.
• Most people on the list for 5 years will get a kidney, and could get a transplant at any time

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 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, they are offered to the 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. Click here

Most people on the list for 5 years will get a kidney and could get a transplant at any time 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whether they are ‘on the list’, they should ask that someone checks direct with UKT (in case the local records are out of date).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 on line.

Suspended patients continue to accumulate points on the register

Being ready for a transplant

Patients 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 number.

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 a list of their medications.

Kidney allocation

Many dialysis patients who have been waiting for a long time for a kidney become concerned that they might have been treated unfairly. Further detailed information on this subject is provided in our leaflet titles ‘How are kidneys allocated

The kidney allocation system in the UK was changed in 2019 These changes have been made to try and give everyone an equal chance of receiving a transplant. 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. 

One reason patients may wait for a longer time is the presence. 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 make it harder to match to a kidney and/or result in longer waiting times 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.

What details are given about the kidney donor?

• The feelings of a donor family mean that no personal information about the donor can be given to a transplant recipient.
• Kidney donation after death is normally a great source of consolation to a family.
• A kidney recipient can usually send an anonymous thank you to a donor family.

Your rights to know about details of a transplant

Normally, if you have an operation you have a right to be told about all the details of the surgery. This is not the case after a transplant. The guidance from the Department of Health and professional bodies is quite clear. This says that when a transplant organ is from someone who has died, the confidentiality and feelings of the donor family have priority over the rights of the person receiving the kidney. This does not mean that there is complete secrecy, and transplant teams are sensitive and flexible in their dealings with donor families and transplant recipients. The outline given here, however, applies to the usual practice of transplant teams in the UK.

What you will be told

You can be told the tissue match between yourself and the kidney being offered. The tissue match is described in our leaflet ‘How are Kidneys Allocated?’, but you can be told whether you have a ‘6 out of 6’, or ‘3 out of 6’ or whatever match with the kidney.

You can ask if there are any problems with the kidney, for example, if there was any accidental surgical damage during retrieval, or has it been out of the donor and in ice for a long time. Generally, the longer the kidney has been out of the donor the less chance it has of working well. However, a transplant has a good chance of working even if it has been on ice for 24 hours.

You can ask if there were any medical problems with the donor which would affect the survival of the kidney. For example, sometimes doctors will take kidneys from a donor who has partial kidney failure, or is receiving temporary dialysis. It is safe to take kidneys from people with most types of brain tumour, but for some brain tumours there is a risk of the recipient getting a brain tumour some years after the transplant.

What you will not be told

The transplant team will not tell you the name or age (an age range will be given) or ethnic origin of the donor, or where they lived. The cause of death will not be given if it might allow the recipient to guess any information about the donor, or might be upsetting to the recipient. For example, some donors have died in very tragic circumstances and it might be possible to identify the donor from newspaper reports if even general information was given to the recipient.

Feelings in the donor family

Asking a family for permission to use organs from someone close to them who has just died is handled sensitively by people called Transplant Co-ordinators, who specialise in this area and have a lot of training. It is important to realise that death has occurred before anyone is asked about transplantation, and the issue of transplantation cannot make people feel worse than they do already. A family has to give permission for the organs to be used. The use of organs for transplantation is generally a source of great consolation to a family, allowing them to feel that something good has come out of a bad situation.

The new ‘Opt-out’ legislation came into force in England and Scotland in 2020 (this is already used in Wales). This means that unless a adult person has recorded a decision NOT to donate their organs, then they will be presumed to have consented to be organ donors

Feelings in the transplant recipient 

Sometimes transplant recipients feel guilty about taking a kidney from someone who has died. This is understandable, but it is very important to realise that transplantation has not caused a death, but is actually a good thing that has come out of a tragic circumstance. Taking a transplant from someone who has died is not just looking after yourself, it is providing the donor family with consolation.

If you want to talk about your feelings on this subject, do contact your local medical team, nurses or Transplant Co-ordinators, who are happy to talk and explore areas of concern. However, desperately someone wants to get off dialysis and have a transplant, they still have caring feelings for others and particularly the families of kidney donors.

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.

Download this Information in PDF

Last reviewed March 2023
Next review March 2026

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