Frequently asked questions

What is organ donation?

Organ donation is the gift of an organ to help someone who needs a transplant. The generosity of donors and their families enables nearly 3,000 people in the UK every year to take on a new lease of life.

When were the first organ transplants?

The first successful kidney transplant was in 1954. The first heart transplant took place in 1967.

What organs can be transplanted?

Kidneys, heart, liver, lungs, pancreas and the small bowel can all be transplanted. Techniques are improving all the time and we may soon be able to transplant other parts of the body to help even more people.

What is tissue donation?

Tissue donation is the gift of tissue such as corneas, skin, bone, tendons, cartilage and heart valves to help others. The first successful cornea transplant was in 1905. Every year thousands of people with a severe eye disease or injury have their sight restored by donated corneas. Bone, tendons and cartilage are used for reconstruction after an injury or during joint replacement surgery. A bone transplant can prevent limb amputation in patients suffering from bone cancer. Heart valves are used to help children born with heart defects and adults with diseased or damaged valves. Skin grafts are used to treat people with severe burns. Most people can donate tissue. Unlike organs, it may be possible to donate tissue up to 48 hours after a person has died. Reproductive organs and tissue are not taken from dead donors.

Why are even more donors needed?

Every year hundreds of people die while waiting for an organ transplant and many others lose their lives before they even get on to the transplant list. There is a serious shortage of organs and the gap between the number of organs donated and the number of people waiting for a transplant is increasing. Transplants are very successful and the number of people needing a transplant is expected to rise steeply due to an ageing population, an increase in kidney failure and scientific advances which mean that more people are now able to benefit from a transplant. However, the number of organs available for transplantation has fallen for several reasons. Only a very small number of people die in circumstances where they are able to donate their organs. Because organs have to be transplanted very soon after someone has died they can only be donated by someone who has died in hospital. Usually organs come from people who are certified dead while on a ventilator in a hospital intensive care unit, generally as a result of a brain haemorrhage, major accident like a car crash, or stroke. The numbers of people, particularly younger people, dying in these circumstances is falling, mainly because of welcome improvements in road safety, medical advances in the treatment of patients and the prevention of strokes in younger people. Another major reason for the shortage of organs is that many people have not recorded their wishes about donation or discussed it with their families. Too few people have joined the NHS Organ Donor Register and made sure that their families know their wishes. While only a very few people die in circumstances which would enable their organs to be donated, many people can donate tissue after their death. Scientific and medical advances in the treatments that are available for patients has led to an increased need for donated tissue.

How do they know you are really dead?

Death has to be confirmed by a doctor or doctors who are entirely independent of the transplant team. Death is confirmed in exactly the same way for people who donate organs as for those who do not. Most organ donors are patients who die as a result of a brain haemorrhage, severe head injury, or stroke and who are on a ventilator in a hospital intensive care unit. In these circumstances, death is diagnosed by brain stem tests. There are very clear and strict standards and procedures for doing these tests and they are always performed by two experienced doctors. The ventilator provides oxygen which keeps the heart beating and blood circulating after death. These donors are called heartbeating donors. Organs such as hearts, which deteriorate very quickly without an oxygen supply, are usually only donated by a heartbeating donor. Patients who die in hospital but are not on a ventilator can, in some circumstances, donate their kidneys, and in certain circumstances, other organs. They are called non-heartbeating donors. Both heartbeating and non-heartbeating donors can donate their corneas and other tissue.

Can they keep you alive with machines?

No. The patient is dead. A ventilator keeps the body supplied with oxygen and this means the heart will continue to beat and circulate blood. This preserves the organs so they can be donated for transplant. When the ventilator is turned off the heart will stop beating within a few minutes.

Will they just let you die if they know you want to be a donor?

No. The doctors looking after a patient have to make every possible effort to save the patient’s life. That is their first duty. If, despite their efforts, the patient dies, organ and tissue donation can then be considered and a completely different team of donation and transplant specialists would be called in.

Can I donate if I die in the emergency department?

Yes, in a small number of hospitals, patients who are confirmed dead on arrival or die in the emergency department can donate organs, in particular kidneys, which are able to tolerate a longer period without oxygen than other organs. This must be done very soon after death to ensure the organs remain suitable for transplantation and the person who has died is not deprived of the opportunity to donate. However, organ donation itself will not take place unless you, in your lifetime, expressed a wish to donate, or the person closest to you in life gives their permission. You can donate tissue whether or not you die in hospital, for instance if you die at home or in a hospice.

Can you donate an organ while you are still alive?

Yes, in some cases. The shortage of organs has led to an increasing number of organ donations by living people. The most common organ donated by a living person is a kidney as a healthy person can lead a completely normal life with only one functioning kidney. Kidneys transplanted from living donors have a better chance of long-term survival than those transplanted from people who have died. There are a number of reasons for this, the main one being that the donor is alive and healthy. Nearly one in three of all kidney transplants are from a living donor. Part of a liver can be transplanted and it may also be possible to donate a segment of a lung and, in a very small number of cases, part of the small bowel. For all forms of living donor transplants the risk to the donor must be considered very carefully. Before a living donor transplant can go ahead there are strict regulations to meet and a thorough process of assessment and discussion. The Human Tissue Act 2004 and Human Tissue (Scotland) Act 2006 allows two new kinds of living kidney donation - paired and altruistic donation. Donors are often a close relative but may also be individuals who are not related but have an established emotional relationship with the recipient such as a partner or close friend. Sometimes a donor and a recipient may be incompatible with each other because of blood group or tissue-type and in this case it may be possible for them to be paired with another donor and recipient in the same situation so that each recipient will benefit from a transplant that they would otherwise not have had (paired donation). Where more than two pairs are involved in the swap it is called “pooled” donation. Donors may also offer to give a kidney to someone who is on the waiting list for a transplant but whom they have never met (non-directed altruistic donation).

Why do I need to make a decision about whether to become a donor?

In the UK organs and tissue from a potential donor will only be used if that is their wish. You can indicate your wishes in a number of ways such as telling a relative or close friend, by carrying an organ donor card or recording your wishes on the NHS Organ Donor Register. Putting your name on the NHS Organ Donor Register makes it easier for the NHS to establish your wishes and for those closest to you in life to follow them. If your wishes are not clear, the person closest to you in life will be asked what they think you would have wanted, so it is important that you make sure they are aware of your views on organ donation.

What is the NHS Organ Donor Register?

The NHS Organ Donor Register is a confidential, computerised database which holds the wishes of more than 16 million people who have decided that, after their death, they want to leave a legacy of life for others. The register is used to help establish whether a person wanted to donate and, if so, what.

Do I need to register if I have a donor card?

Yes. Cards can and do get lost or damaged and you may not be carrying yours when you are taken to hospital. Adding your name to the register is a more permanent way of expressing your wishes. You can still carry a card if you wish to. Don’t forget to tell your relatives what your wishes are.

Will my name and address be given to other organisations?

No. This information will only be used by NHS Blood and Transplant to register your wishes on the NHS Organ Donor Register and by health care professionals in the event of your death. Your personal details will not be passed to any individual or organisation without seeking your explicit consent.

I’m not sure if I’ve already registered, what should I do?

Either write in and ask (the confidential nature of the register means that we cannot tell you over the phone) or apply to join and our system will identify if you are already on the register and update any relevant details.

Who would get my organs and tissue if I became a donor?

Many things need to match or be very close to ensure a successful organ transplant. Blood group, age and weight are all taken into account. For kidneys another important factor is tissue type which is much more complex than blood grouping. The best results can be achieved if a perfect match is found. There is a national, computerised list of patients waiting for an organ transplant. The computer will identify the best matched patient for an organ or the transplant unit to which the organ is to be offered. Normally, priority is given to patients who most urgently need a transplant. NHS Blood and Transplant operates the transplant list and donor organ allocation system. It works round the clock, every day of the year and covers the whole of the UK. Tissue is very occasionally matched, e.g. for size and tissue type, but otherwise is freely available to any patient in need of a transplant.

Are donors screened to identify if they have a transmissible disease?

Yes. Blood is taken from all potential donors and tested to rule out transmissible diseases and viruses such as HIV and hepatitis. The family of the potential donor is made aware that this procedure is required.

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

Yes, in most circumstances. Having a medical condition does not necessarily prevent a person 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. There are only two conditions where organ donation is ruled out completely. A person cannot become an organ or tissue donor if they have been diagnosed with HIV or have, or are suspected of having, CJD.

Can I be a donor if I have been turned down to donate blood?

Yes. The decision about whether some or all organs or tissue are suitable for transplant is always made by a specialist, taking into account your medical history. There may be specific reasons why it has not been possible to donate blood, such as having had a blood transfusion or having had hepatitis in the past. Or there may be reasons why you could not give blood because of your health at the time – sometimes a simple thing like a cold or medication that you are taking can prevent you from donating blood.

Can a child donate after their death?

Yes, if he or she had expressed such a wish and was considered legally competent to do so. If their wishes were not known, permission would be sought from their parent or the person in the closest qualifying relationship to them at the time of their death. A child is defined as being under 16 in Scotland and under 18 in the rest of the UK. In Scotland, children aged 12 and over can authorise the donation of organs after their death.

Is there a minimum age to join the NHS Organ Donor Register?

No. Parents and guardians can register their children and children can register themselves. Children who are under 12 in Scotland and under 18 in the rest of the UK at the time of registration will require their parent or guardian’s agreement for donation to take place if they are still under 12 when they die. Children over 12 in Scotland are considered legally competent to register themselves and their parent/guardian does not have the legal right to veto or overrule their wishes.

What happens if my parents registered me when I was too young to know?

All children who are under 12 in Scotland and under 18 in the rest of the UK at the time of registration have a marker beside their registration. This marker will be removed once you re- register above the age of 18 or 12 (Scotland). If the marker is not removed permission would be sought from your nearest relative at the time of your death.

Can older people be donors?

Yes, in the case of corneas and some other tissue, age does not matter. For other organs it is the person’s physical condition, not age, which is the deciding factor. Specialist healthcare professionals decide in each case which organs and tissue are suitable. Organs and tissue from people in their 70s and 80s are transplanted successfully.

Are there religious objections to organ and tissue donation?

No, none of the major religions in the UK object to organ and tissue donation and transplantation. If you have any doubts, you should discuss them with your spiritual or religious adviser.

Does the colour of my skin make a difference?

No. However, organs are matched by blood group and tissue type (for kidney transplants) and the best-matched transplants have the best outcome. Patients from the same ethnic group are more likely to be a close match. A few people with rare tissue types may only be able to receive a well- matched organ from someone of the same ethnic origin, so it is important that people from all ethnic backgrounds donate organs. Successful transplants are carried out between people from different ethnic groups wherever the matching criteria are met.

If someone desperately needs an organ, is there any point in making a special appeal?

Yes and no. Any special appeal usually results in more people agreeing to become donors and can increase the number of organs available. However, family appeals through the newspapers and television will not result in an organ immediately becoming available for the person on whose behalf the appeal was made. The patient will still be on the transplant list, just like everyone else, and the rules that govern the matching and allocation of donor organs to recipients still apply.

Can I agree to donate some organs or tissue and not others?

Yes. You can specify which organs you would wish to donate. Simply tick the appropriate boxes on the NHS Organ Donor Register form or on the donor card, and let those close to you know what you have decided.

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

No. Organs and tissue cannot be accepted unless they are freely donated. No conditions can be attached in terms of potential recipients. The only restriction allowed is which organs or tissue are to be donated.

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

Possibly. Patients entitled to treatment on the NHS are always given priority for donated organs. These include UK citizens, members of Her Majesty’s forces serving abroad and patients covered by a reciprocal health agreement with the UK. Other patients would only be offered an organ if there were no suitable patients entitled to treatment under the NHS. Every effort is made to ensure that a donated organ does not go to waste if there is someone who can benefit. Donated tissue is made available to any hospital in the UK where there is a patient in need.

Does being a donor cause delays to funeral arrangements?

No. The donation operation is performed as soon as possible after death.

Could any of my organs or tissue be given to someone in another country?

Yes, possibly. There is an agreement that any organs that cannot be matched to UK patients are offered to patients in other European countries. Likewise, UK patients benefit from organs offered by other European countries. This co-operation increases the chance of a suitable recipient being found, ensuring that precious organs do not go to waste. Tissue might also be offered to patients in other countries.

Does donation leave the body disfigured?

Organs and tissue are always removed with the greatest of care and respect for the person. This takes place in a normal operating theatre under the usual conditions. Afterwards the surgical incision is carefully closed and covered by a dressing in the normal way. Tissue can be removed in an operating theatre, mortuary or funeral home. The operation is carried out by specialist healthcare professionals who always ensure that the donor is treated with the utmost respect and dignity. Only those organs and tissue specified by the donor or their family will be removed.

Is it possible to see the body after donation?

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

Does a donor’s family have to pay the cost of donation?

No. There is no question of any payment at all. The NHS meets the costs related to the donation of organs and tissue.

Will the NHS pay the cost of the funeral?

The NHS will not pay the cost of the funeral. 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.

My relative wants to be a donor. What do I need to do when they die?

Inform the healthcare professionals who are involved either with your relative’s care or are helping you in the immediate period following their death (this could be a member of the hospital staff, a police officer, a Procurator Fiscal officer or a GP) that they wanted to donate. The earlier you are able to tell staff, the more likely it is that donation can take place.

Will organs or tissue that are removed for transplant be used for research purposes?

Organs and tissue that cannot be used for transplant will only be used for medical or scientific research purposes if specific permission has been obtained from your family.

How is organ donation different from organ retention?

The problems of organ retention arose because proper consent was not obtained from parents or relatives for organs and tissue removed at post-mortem to be kept for research or other purposes. As a result of these problems the law was changed and the Human Tissue Act 2004 and the Human Tissue (Scotland) Act 2006 were introduced. Organs and tissue are only removed for transplantation if permission has been given.

Would a donor’s family ever know who the recipient was?

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 in some instances donor families and recipients have arranged to meet.

Why should I discuss my wishes with my relatives?

So that they know what you would like to happen after your death and can confirm or help inform NHS staff what your wishes were. If you register your wishes without telling the people closest to you, it may come as a surprise at a time when they are trying to deal with their loss. If you think you would find it difficult to raise the subject, you could try using these questions or a TV or newspaper story about a transplant to start a discussion.

What will happen if my relatives object?

We know that in most cases families will agree to donation if they knew that was their loved one’s wish. If the family, or those closest to the person who has died, object to the donation when the person who has died has given their explicit permission, either by telling relatives, close friends or clinical staff, or by carrying a donor card or registering their wishes on the NHS Organ Donor Register, healthcare professionals will discuss the matter sensitively with them. They will be encouraged to accept the dead person’s wishes and it will be made clear that they do not have the legal right to veto or overrule those wishes. There may, nevertheless, be cases where it would be inappropriate for donation to go ahead.

What if I have no family or other relatives?

You can join the NHS Organ Donor Register but to fulfill your donation wishes, 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 is advisable also to tell the person closest to you in life, a friend of longstanding or a close colleague, about your decision.

Who is my nearest relative?

Where the wishes of a person who has died are not known, the Human Tissue Acts define who is their nearest relative. 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 and other relatives to a friend of long standing. Please see legislation page 10.

Should I put my wishes in my will?

No. By the time your will is read it is likely to be far too late for you to become a donor because organs and tissue need to be removed within 48 hours of death. This is why it is so important to let those closest to you know your wishes and to record them on the NHS Organ Donor Register.

Can I change my mind?

Yes. You can ring the Organ Donor Line on 0300 123 23 23 or go to the NHS Blood and Transplant website www.organdonation.nhs.uk/register – and fill in the form asking for your name to be removed. If you prefer, you can write to: FREEPOST RRZK-SHUX-SBCK, NHSBT, Fox Den road, Stoke Gifford, Bristol, BS34 8RR. If you have an organ donor card, tear it up. Let your family know that you have changed your mind.

Can people buy or sell organs?

No, the transplant laws in the UK absolutely prohibit the sale of human organs or tissue.

I am interested in giving blood, what do I do?

Blood is needed constantly, for all kinds of things, such as cancer treatments, operations and in child birth. There are thousands of places all over the country that hold blood donor sessions and new blood donors are always welcome. Almost anyone aged 17 to 60 years and in general good health can give blood. Almost anyone aged 17 to over 70 years for those who have previously donated blood and in general good health can give blood. If you live in Scotland contact: Scottish National Blood Transfusion Service 0845 90 90 999 www.scotblood.co.uk

I am interested in donating bone marrow, what do I do?

Without bone marrow, blood cannot be produced. When things go wrong and the bone marrow becomes damaged, for example as a result of treatment for leukaemia or a related cancer of the blood, the patient must receive a transplant to survive. If you live in Scotland contact: Scottish National Blood Transfusion Service 0845 90 90 999 www.scotblood.co.uk There is also a register of people willing to become bone marrow donors held by the Anthony Nolan Trust. To find out more about the register contact: newdonor@anthonynolan.org.uk 0901 88 22 234 www.anthonynolan.org.uk

How is transplantation organised?

When a patient is considered as a potential organ donor, the local donor transplant coordinator is contacted. Where donation goes ahead, the transplant coordinator must ensure that the medical tests such as blood group and tissue type matching are carried out. They also research the donor’s medical history by reviewing the medical notes, talking to the family and liaising with doctors who may have treated the donor in the past. All patients who are waiting for transplants are registered on the National Transplant Database at UK Transplant and when organs from a donor become available a computer search is made to find the most suitable recipients. A team of specialist surgeons is called to the donor’s hospital to carry out the surgery to remove and preserve the organs for transport to the transplant unit. During the operation the surgeon will make a final decision that the organs are healthy and not diseased or damaged in any way which may make them unsuitable for use. This will mean that a waiting patient’s hopes are dashed and that their wait for a transplant must continue. If all is well, the organ is received at the transplant unit and transplanted immediately.

Who are transplant coordinators?

Donor transplant coordinators are responsible for the care of the person who has died, speaking to their family and organising the organ donation procedure. They support families before, during and after donation and are there to answer any questions they might have. Part of their role is to ensure that the donor’s family is told in general terms about the eventual use of the donated organs, e.g. the heart went to a young man who is doing well. Confidentiality is always maintained. They also work with their local community to make people aware of why organ donation is so important and train and educate health professionals about what is obviously a sensitive and delicate subject. Recipient transplant coordinators help to assess patients’ suitability to go on the transplant waiting list and organise the transplant operation as well as follow-up consultations for those patients who received a donated organ.