"If you could see Ben and the difference his transplant has made to both his life and ours you would really see what a truly amazing gift this is."

"A couple of weeks after Denise’s passing, I received a letter from the organ donation team informing me that five different lives had been saved from Denise’s organ donation."

"In July 2010 a nurse told me that a heart had become available. It was very surreal, I wasn't afraid; in fact I was overjoyed as I knew this was the only way I was going to survive."

Frequently Asked Questions and myths

The fundamentals

What is organ donation?

Organ donation is the gift of donating your organs and tissue to those in need of an organ transplant. In Northern Ireland, 42% of the population has already signed the NHS Organ Donor Register and around 200 people are on the transplant waiting list.   

What is the NHS Organ Donor Register?

The NHS Organ Donor Register is a confidential central database where your details are held if you chose to sign up to be an organ donor. The register lists the organs and/or tissues you want to donate and can be accessed by healthcare professionals so they know your wishes in the event of your death.

What organs can be transplanted?

The kidneys, heart, liver, lungs, pancreas and small bowel can all be transplanted.

What is tissue donation?

Tissue that can be donated includes corneas and heart valves. Tissue donation can be used to treat many conditions and injuries including eye disease and heart surgery. 

Why are even more donors needed?

With around 200 people on the transplant waiting list in Northern Ireland, last year 13 people died because they didn’t receive the vital donation they need, more people are needed on the register.

Not everyone who has expressed a wish to be a donor will be eligible to donate in the event of their death.  There are specific circumstances needed to make organ donation possible - which means that only a small percentage will be able to donate. This makes it crucial for more people to sign the NHS Organ Donor Register or tell their family they want to be a donor.

The number of transplants needed is rising due to an aging population and increases in illnesses such as diabetes, kidney, heart and liver disease. With only 42% of the population registered in Northern Ireland, that’s not enough potential donors to meet the need for organs.

Why are more donors from black, Asian and minority ethnic backgrounds needed?

Those from black, Asian and minority ethnic (BAME) backgrounds are up to 3 times more likely to need a transplant because illnesses such as diabetes, kidney disease and heart disease, which may result in organ failure, occur more often in those communities.

Ethnicity is not used when matching organs, but organs such as kidneys are matched by blood group and tissue type and when donor and recipient are from the same ethnic group, a successful outcome is more likely. A few people with rare tissue types will only be able to accept an organ from someone of the same ethnic origin.

With a low number of donors on the register in Northern Ireland from black, Asian and minority ethnic backgrounds, it is vitally important more donors from these communities are registered.

What is an opt-out system?

At present, the only way to register your wish to be an organ donor is to opt in and sign the NHS Organ Donor Register.

Changing legislation in Northern Ireland to a ‘soft opt-out’ system is being debated and considered. This means everyone would be presumed to have consented to organ donation unless they register their decision to opt out. However, this proposed change to legislation has not been agreed or implemented.

If you want to be an organ donor, it’s important to sign the NHS Organ Donor Register. No matter what system is in place, however, your family will always be consulted after your death, so it’s important to talk to them about your wishes.

What is living donation?

Some people choose to be a live donor. Living donors can donate to a member of their family, a friend or even someone they do not know.

Living donation can include a kidney or part of the liver. Deciding to be a living donor is something that must be considered very carefully and you will be thoroughly assessed to ensure that it is safe for you to donate.

The Organ Donor Register is only for those who wish to donate after death. To become a living donor, you must contact a transplant centre directly. More information about living donation and things to consider can be found on the NHS Organ Donation website.

Deciding to register

Why do I need to make a decision about becoming a donor?

Making a decision about becoming a donor and signing the register makes your wishes clear to healthcare professionals and your family or friends following your death.

When someone dies, it can be a difficult and stressful time for those closest to them. By signing the register and talking to your family about your decision, you are removing the burden from them to make that decision for you. Families can take comfort from knowing what you wanted and something positive coming from their loss.

I have a donor card. Do I still need to register?

Yes. In the past, many people carried an organ donor card; however, these were easily misplaced and were not centrally recorded within the healthcare system. This is now the old system and cards are only issued once you have signed the NHS Organ Donor Register. You don’t have to carry this card with you as signing the register ensures healthcare professionals will know you want to be a donor. Don’t forget to tell your family too.

I think I might be registered already. How do I check or amend my details?

The best way to check if you're on the NHS Organ Donor Register is to call the NHSBT Donor Line on 0300 123 23 23.

You will be asked to provide your full name and date of birth. If an entry is found, your details will be checked and updated where necessary, eg address, organ preference. If no entry is found, you will be given the option to register over the phone.

Does everyone on the Organ Donor Register become an organ donor?

No. Only a very small number of people die in circumstances where they are able to donate their organs. That is why as many people as possible are needed to join the register.

Will my name and address be given to other organisations?

No. The NHS Organ Donor Register is a confidential database that is accessed only by healthcare professionals. Your details will not be passed on to any other organisation or individual.

Can I change my mind?

Yes. At any time you can amend your preferences or remove your name from the register by calling the NHSBT Donor Line on 0300 123 23 23 or visiting the NHSBT website.

Who is eligible

Can a child donate after death?

Yes. Consent would be sought from their parent or the person in the closest qualifying relationship to them at the time of their death. Children aged 14 and over in Northern Ireland can sign the NHS Register and parents/guardians can register their children before the age of 14 if it is something the child has expressed a wish to do.

Can I be a donor if I have an existing medical condition?

Yes, in most circumstances. Having a medical condition does not necessarily prevent you from becoming an organ or tissue donor. The decision about whether some or all organs or tissue are suitable for transplant is made by a healthcare professional, taking into account your medical history. The only condition where organ donation is ruled out completely is Creutzfeldt-Jakob Disease (CJD).

Is there an upper age limit?

No. Organs and tissue from people in their 70s and 80s are often transplanted successfully. It is the donor’s physical condition, not age, which is the deciding factor for most donations. The decision about whether some or all organs or tissues are suitable for transplant is made by the transplant team at the time of your death.

What happens to my organs

Who would get my organs and tissue?

There is a national, computerised list of patients waiting for a transplant, and the computer will identify the best matched patient for an organ, or the transplant unit to where the organ is to be offered.   Normally, priority is given to patients who most urgently need a transplant. Tissue is generally freely available to any patient needing a transplant.

Can I agree to donate some organs and not others?

Yes. When you sign the NHS Organ Donor Register you will select which organs or tissues you wish to donate. It is entirely your choice. Read more about what organs you can donate and how they might be used.

 

Can I agree to donate to some people and not others?

No conditions can be attached in terms of potential recipients. In some special circumstances, a donor can direct their donation to a close family member who critically needs an organ.

Living donors can nominate who they would like to donate to, such as a family member or friend. To become a living donor you do not sign the register, you must contact a transplant centre directly. More information about living donation can be found on the NHSBT website.

Could my donated organs and tissue go to a private patient?

Patients entitled to treatment on the NHS are always given priority for donated organs. Other patients would be offered an organ only if no suitable patient entitled to treatment under the NHS was identified. Donated tissue is made available to any hospital in the UK where there is a patient in need.

Will organs or tissue be used for research purposes?

This will happen only if specific permission is obtained from your family.

Can people buy or sell organs?

No. It is illegal to buy or sell human organs or tissue in the UK.

Can I donate my body to medical science?

Bodies are not accepted for medical science education or research if organs have been donated. The only exception is if only the corneas are to be donated. To find out more information about whole body donation for research purposes or for medical teaching, you can contact:

The Department of Anatomy
Queen's University Belfast
Medical Biology Centre
97 Lisburn Road
Belfast
BT9 7BL

Tel: 028 9097 2131

After donation – what happens next

Can the donor’s family see the body after the organs have been removed?

Families are given the opportunity to spend time with their loved one after the operation if they wish, and this is facilitated by the specialist nurse. Arrangements for viewing the body after donation are the same as after any death.

Organs and tissue are always removed with the greatest of care and respect. The patient’s wounds are closed and dressed the same as after any other operation.

Does being a donor cause delays to funeral arrangements?

Burial traditions in Northern Ireland are often different than in other parts of the UK.

The organ donation operation is performed as soon as possible after death. To allow the process to be organised and successful donation to take place, it can cause a short delay to funeral arrangements, possibly up to 24 hours.

After this, however, funeral arrangements can be made as normal, including the option to have an open coffin.

Will the Health and Social Care (HSC) service pay for funeral expenses?

The HSC does not cover the cost of funeral expenses for donors. Funeral costs are met either by the family or from the person’s estate. Families in receipt of certain benefits may be able to get help with the cost of funerals.

Would a donor’s family ever know the recipient?

Confidentiality is always maintained, except in the case of living donors who already know each other. If the family wish, they will be given some brief details such as the age and sex of the person, or persons, who have benefited from the donation.

Patients who receive organs can obtain similar details about their donors. It is not always possible to provide recipient information to donor families for some types of tissue transplant.

Those involved may want to exchange anonymous letters of thanks or good wishes through the transplant coordinators and specialist nurses for organ donation. In some instances, donor families and recipients have arranged to meet.

Friends and family

Why should I discuss my wishes with my relatives?

Deciding to become an organ donor is entirely your decision but it does affect your family. After your death, your family will be consulted and any decision they make will be respected. When people know the wishes of their loved one, it makes the situation less stressful and can give your family the confidence to fulfill your wish of being an organ donor.

Who decides my next of kin?

Where the wishes of a person who has died are not known, the Human Tissue Act ranks people who had a relationship with them. This enables specialist healthcare professionals seeking permission for donation to know who they should approach and in what order. This ranges from a spouse or partner (including civil or same sex partner), parent or child, brother or sister, or other relatives.

What will happen if my relatives object?

The specialist nurses will be available to provide information and support to answer any questions and concerns families may have. This will allow families to make an informed decision about donation and support your wishes, if known. That is why it’s very important to discuss your decision with your family and make them aware you want to be an organ donor.

If your family decide against organ donation, however, their wishes will be respected.

Should I put my wishes in my will?

By the time your will is read it will be too late to carry out your wishes. Healthcare professionals will not check with your will bearer to see if you’ve recorded a wish to be a donor. The only sources they will consult are the register and your family. That’s why it’s so important to sign the register and tell your family you have done so.

What if I have no family or other relatives?

You can join the NHS Organ Donor Register but healthcare professionals will need to speak to someone else at the time of your death who can advise on your medical and social history. This may be your GP – but it’s also advisable to tell the person closest to you, a friend or close colleague, about your decision.

Organ donation myths

Doctors won’t save me if I’m an organ donor

If you’re ill or injured, the appropriate medical professionals will be dedicated to giving you the best possible care and doing everything they can to save your life. If a patient reaches a point where nothing more can be done to save their life, the medical team will discuss with their family about beginning end-of-life care. It is during this discussion that the possibility of organ donation would be raised and the family given time to consider.

I might not really be dead

Death is confirmed in exactly the same way for people who donate organs as for those who don’t.  Death has to be confirmed by a doctor who is entirely independent of the transplant team.

It’s possible for a brain dead person to recover from their injuries

Many organ donors are patients who have died as a result of a severe head injury, stroke or brain hemorrhage and are on a ventilator in a hospital intensive care unit.

When someone is brain dead, it means that the brain is no longer working in any capacity and never will again. Other organs, such as the heart, kidneys or liver, can still work for a short time if the breathing machine is left in place, but when brain death is declared, it means the person has died.

Brain death is diagnosed by brain stem tests and there are clear and very strict standards and procedures. Brain death is determined in the hospital by two doctors not associated with a transplant team.

Organ donation is against my religion

Organ donation is considered acceptable under the beliefs of most religions, and none of the major religions in the UK object to it. If you're not sure of your faith's position on donation, you should discuss this with your spiritual or religious adviser. Read the NHS leaflets on religion and organ donation for further information.

You need to be 18 to join the NHS Organ Donor Register

In Northern Ireland, anyone over the age of 14 can sign the Organ Donor Register. Parents and guardians can also register their children before the age of 14.

I’m too old, you wouldn’t want my organs

Organs and tissues from people in their 70s and 80s are often transplanted successfully. It is the donor’s physical condition, not age, which is the deciding factor for most donations. The decision about whether some or all organs or tissue are suitable for transplant is made by a healthcare professional at the time of your death.

I’m not in the best of health, you couldn’t use my organs

Very few medical conditions automatically disqualify you from donating organs. It may turn out that certain organs aren’t suitable for transplantation, but other organs and tissues are. It’s best not to rule yourself out. If you are registered, the medical team can decide after your death.

I can’t donate blood, so I can’t be an organ donor

The criteria for donating blood are different from the criteria for organ donation.

Organ donation will leave my body disfigured

Organ donation does not cause any obvious disfigurement to the donor’s body. Organs and tissue are always removed with the greatest of care and respect. The patient’s wounds are closed and dressed the same as after any other operation.