Going on the transplant waiting list

Find out how to join the bowel transplant waiting list

Key points

You will need to go on the national transplant waiting list to receive an organ from a deceased donor
This is a list of all the people in the UK who are waiting for an organ from a deceased donor.
The transplant list is not a queuing system, it matches donated organs to the patients based on many different factors
Offers can come through at any time, so make sure your mobile phone is always on

What is the transplant waiting list?

This is a list of all the people in the UK who are waiting for an organ from a deceased donor. It covers all organ transplants, including heart, lung, kidney, liver, pancreas and small bowel. If you and your transplant team would like you to receive a bowel from a deceased donor, you will need to join the list.

How long is the wait for a bowel?

How does the waiting list work?

The transplant waiting list is not queuing system, where the first person in the queue is offered the next available organ. It is more of a matching system. Many factors are used to decide which patient is most suitable to be offered a donated organ.

Learn more about the organ offering system

To be accepted on the transplant waiting list for a bowel

The process for getting on the national waiting list for a bowel is different than for other organs. Once you have had your assessment at your transplant centre then they will present your case at the National Adult Intestinal Transplant forum (NASIT). This forum consists of representatives from transplant centres as well as representatives from the major intestinal failure centres in the country. Your referring bowel doctors also attend. This is a meeting for clinicians.

Following a discussion about your case, the group will advise on what they think is the best treatment option for you. Once the meeting has taken place your transplant centre will be in contact with you to let you know the outcome of the meeting.

It is important at this stage to remember that even if a transplant is offered to you, if you don't feel it is right for you, you can decline this. If your transplant team feel a decision needs to be made quickly, they will advise and support you through this decision.

Once your team has discussed this with you and you feel ready to be listed then you can be placed on the national waiting list.

Before you join the transplant waiting list

You will have tests to check your health and organ function
The benefits and risks of a transplant will be clearly explained to you
You may be asked to sign a consent form to say that you agree to have a deceased donor transplant
Some personal information will need to be held by the UK Transplant Registry, which is used in organ offering
You may need to be vaccinated before you can be 'activated' on the transplant waiting list. This is to help reduce the risk of infection after a transplant

View selection and allocation procedures for bowels

Make sure you tell your transplant team if:

You become unwell

Some illnesses can affect how well the transplant works. If you're unwell, tell your transplant team straight away. They will put your place on the transplant waiting list on hold until you're well enough to have the operation. This means you will be 'suspended' on the list and won’t be offered an organ when you’re not well enough to receive it. It is only temporary until you are fit enough for a transplant.

If you have a serious, long-lasting illness, you may need to have more tests before you can go back on the list. This is to check you're still able to have a transplant within an acceptable risk level. With all transplants, the benefits must outweigh the risks. If the risks are too high, it may be better for you to come off the list completely. This will be discussed with you.

You are admitted to hospital

Your contact details change

Make sure your medical teams have your most up-to-date contact details so they can reach you if an offer comes in.

This includes:

Home phone number
Mobile phone number
Work phone number
Phone numbers of your next-of-kin

You need to be contactable at any time of the day or night once you are 'active' on the transplant waiting list.

Always keep your phone switched on

If your transplant team cannot contact you within 45 minutes of receiving an organ offer, they may need to turn down the offer. You can’t receive a transplant if your transplant team can’t contact you.

You go on holiday

What else do you need to know while you’re on the transplant waiting list?

You will have regular checks

How to get to the transplant centre

Where to turn to for support

We understand that waiting for a transplant is very stressful for you and your loved ones. If you feel that you need extra support to cope with this, please contact your transplant team. Social workers and psychologists are available to offer advice and support. There may be other transplant patients who can offer advice and support – your transplant team can arrange for you to meet them.

If you have questions about your medications or health while you are on the transplant waiting list, please ask your care team.

More about support

Research studies