Maggie Sherwin’s young son, Dilan, died after he was involved in a road accident. But as she and her husband Simon came to terms with losing Dilan, they decided the six-year-old’s death should not be in vain. The couple donated their child’s organs to help save others.

“We had seen a programme about organ transplantation on a television in the ward when we were sitting with Dilan. He was very badly injured and unconscious and we began talking about what we should do if he died.

“Dilan was a very caring little boy. Whenever he saw something on the television about children in hospital – he called them ‘the poorly children’ – he would run and ask me what we could do for them.

“That side of his nature made it easier for us to take the decision to donate his organs.”

Dilan suffered brain damage in the accident on December 18 2001 and died on New Year’s Eve.

“We had constantly talked to him as we sat at his bedside and we both knew deep down that he couldn’t hear us and would not have been able to understand us fully even if he could. But we both knew he would agree. He was going to be able to do something to help the ‘poorly children’ at last.”

A London boy aged five received Dilan’s heart, and one of his kidneys was transplanted into a 39-year-old woman from Manchester. Both are doing well and Maggie recently received a card from the boy.

“It made me really happy to get that card. There was nothing we could have done to save Dilan’s life but it is really rewarding to know he helped some other little lad to live.

“I find a lot of comfort in knowing that if Dilan was not to have a full life then at least another little boy will have the chance.”

Nurses Peter Knight and Jan Thompson fell in love at Dorset County Hospital near Dorchester and shared their lives for a few short, blissfully happy years.

In November 2003, Peter, 42, collapsed while working his shift as a theatre nurse at the hospital and hit his head on a trolley wheel. He suffered a brain haemorrhage, fractured his skull in the fall and had a fit. Peter was rushed to intensive care in the hospital, where colleagues fought to save his life.

Jan, who shared a home with Peter in nearby Charminster, was working as a community staff nurse in Dorchester when she was told about Peter’s collapse. She rushed to his side.

As it became apparent he was not going to recover, Jan remembered what Peter had told her about wanting to donate organs for transplant if he could.

“Peter and I were very close and we had discussed organ donation. We were both in favour of it, but I wasn’t sure whether he’d signed up to the NHS Organ Donor Register,” says Jan.

“It turned out that he was on the register, but even then the hospital still needed my permission to go ahead and begin the process of donating his organs to other people.

“It was made far easier for me at that time because he had taken a positive action to back up our talk: he had signed on the register. I agreed to the donation in the full knowledge that it was what he would have wanted.”

Peter’s heart was transplanted into a 53-year-old man, a kidney was transplanted into a 30-year-old man, his liver went to a woman aged 37, and a man aged 43 received his lungs.

“It was a terrible time for the family. I can understand the agonies that other families must have to go through if they don’t know what their loved one would have wanted. They have to act in a vacuum or guess what their wishes were.

“It was unbelievable the way it fell into place. I knew that he wanted to donate if he could, then he collapsed and died at work in a hospital, and the way the donation process went on after that, it was incredible.

“I can see now how vital it is to know what your family members want after they’ve gone. It made it so much easier for me, and for Peter’s father, to decide in favour of donation.

“Peter always wanted to help people. You can’t go into our jobs without wanting to do the best you can for others. To be able to do that even after death is the most fitting tribute there can ever be to this sweet and gentle man.

“The wonderful knowledge that Peter’s organs are now bringing new lives to four other people is just fantastic.

“I’ve received letters from some of them and it’s a great comfort to hear how they’re progressing and how they owe their new health to the man I loved.

“It’s amazing that I’ve worked in the NHS all my professional life yet I knew absolutely nothing about the organ donation process. It was a complete mystery what happened and how those that work in the field went about it. They did it all so professionally and sensitively. It left me quite awestruck.”

Stephen Masters, 32, died of a brain haemorrhage in January 2001. The decision to allow his organs to be donated was made less heartrending for his family because they already knew exactly what Stephen would have wanted.

“Stephen had spoken of his wish to donate if the circumstances ever arose. He was a very generous man by nature and making a gift of his organs was entirely in character,” says Stephen’s brother Paul.

“We discussed it as a family after the transplant co-ordinator made the initial approach and, in spite of the awful suddenness of his death, we were able to give permission because we wanted to honour his wishes.”

The donation went ahead and Stephen’s kidneys, liver and lungs were transplanted into four people that day. His heart had been damaged and was unsuitable for transplant, although his heart valves were stored for later transplants.

“We were told that the man who’d received Stephen’s lungs had cystic fibrosis. He’d been on a ventilator before the transplant but within 24 hours of the operation he was breathing on his own again,” says Paul.

Almost a year later, Paul and his family received news from the recipients of Stephen’s kidneys.

“When letters arrived from the women who’d received Stephen’s kidneys, I saw then that his death had served a purpose, that there had been some meaning to what had seemed to be such a senseless waste of his life.

“Receiving letters from the recipients gave tremendous comfort to us and has helped us come to terms with our loss. I was also pleased to see they appreciated the gift Stephen had made, and had the kindness to let us know what a difference he had made to their lives.”

The NHS Organ Donor Register is a confidential national database that holds the details of more than 19 million people who want to donate their organs after their death.

In the event of your death, there is a chance your organs could help save someone else’s life.

The register can be accessed by healthcare professionals to find out whether an individual has registered to be an organ donor.

By adding your name to the NHS Organ Donor Register, everyone will be aware of your wishes, making it easier for them to agree to your donation. You can join the register in a number of ways, including:

• completing an online form on the NHS Blood and Transplant (NHSBT) website 
• completing a form available in GP surgeries, libraries, hospitals and pharmacies
• calling the NHS Donor Line on 0300 123 23 23
• when applying for a driving licence
• when registering with a GP
• when registering for a European Health Insurance Card (EHIC)

When registering, it is important you tell the people closest to you about your decision. In the event of your death, the person closest to you (usually your next of kin) will be asked to confirm that you had not changed your mind before your death.

Many people have gained a great deal of comfort from knowing that the death of a loved one has helped save the life of another person.

The donation process

If appropriate, brain stem death testing will be carried out by hospital staff to confirm the patient is dead. Alternatively, a joint decision may be made by medical staff, nursing staff and the patient’s relatives that although brain stem death has not occurred, the prospect of survival is so low it is not helpful to continue with artificial ventilation.

The Organ Donor Register will be checked by a Specialist Nurse for Organ Donation to see if the patient is on the register. If they are, the specialist nurse will speak to the family about the patient’s wishes.

If the family agrees to organ donation, the specialist nurse must ensure medical tests are carried out, such as blood group and tissue type matching. They will also look at the donor’s medical history and ask the family some questions about them. This will help confirm whether or not the organ donation can take place.

You can find the answers to many common questions about organ and tissue donation on the NHS Blood and Transplant (NHSBT) website. 

You can also read real stories about organ donation from people who have received organs, and of families who have donated their loved ones’ organs.

Organ donation and medical conditions

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 three conditions where organ donation is ruled out completely. A person cannot become an organ or tissue donor if they have had:

• cancer that has spread in the last 12 months
• a severe or untreated infection
• Creutzfeldt-Jakob Disease (CJD), a rare condition that affects the nervous system and causes brain damage 

The National Transplant Database at NHS Blood and Transplant holds the records of every person in the UK waiting to receive an organ transplant. When organs from a donor become available, a computer search is carried out to find the most suitable recipients.

A team of specialist surgeons is called to the donor’s hospital to remove and preserve the organs for transport to the transplant unit. Timing is crucial because certain organs need to be transplanted within four to six hours.

During the operation, the surgeon will make a final decision about whether the organs are healthy and suitable to be transplanted. If all is well, the organ is received at the transplant unit and transplanted immediately.

Types of living donation

Under the Human Tissue Act 2004 and the Human Tissue (Scotland) Act 2006, an organ such as a kidney can be donated by a living kidney donor in two ways:

• Anonymous kidney donation – where the kidney is donated to someone who the donor has never met (this is sometimes called non-directed altruistic donation)
• Paired donation – if a relative or spouse wishes to donate but is not a match for the person who needs a transplant, the couple can be paired with a similar donor and recipient who do not match. This allows each recipient to benefit from a transplant that they would not otherwise have had.

Read more information about living kidney donation on the NHS Blood and Transplant (NHSBT) website.

Organ donation is the process of a person donating their organs for transplant. These are given to someone with damaged organs that need to be replaced.

An organ transplant may save a person’s life, or significantly improve their health and quality of life.

The need for donors

Between April 1 2011 and March 31 2012, 3,960 organ transplants were carried out in the UK thanks to the generosity of 2,143 donors. However, there are always significantly more people waiting for an organ transplant than there are suitable donors. For example, in November 2012, more than 7,593 people were still waiting for transplants.

Read more about waiting times for a transplant on the NHS Blood and Transplant (NHSBT) website. 

There is a particular need for more people of African, African-Caribbean and south Asian ethnicities to join the Organ Donor Register. This is because donation rates among these ethnic groups are low.

Black people are three times more likely to develop kidney failure than the general population, and the need for donated organs in Asian communities is three to four times higher than in the general population.

There is no age limit to becoming a donor. A person’s physical condition, not age, 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.

Most people waiting for a donated organ need to have a kidney, heart, lung or liver transplant. One donor can help several people because a single donor can donate a number of organs, including:

• kidneys
• liver
• heart
• lungs
• small bowel
• pancreas

Tissues that can be donated include: 

• the cornea (the transparent layer at the front of the eye)
• bone
• skin 
• heart valves
• tendons
• cartilage

All donors have the choice of which organs and tissues they wish to donate. Read more about what organs can be donated.

How to donate

The NHS Organ Donor Register is a confidential national database that holds the details of more than 19 million people who want to donate their organs when they die. 

By adding your name to the NHS Organ Donor Register, everyone will be aware of your wishes, making it easier for them to agree to your donation. You can join the register in a number of ways, including:

• by completing an online form 
• by calling the NHS Donor Line on 0300 123 23 23

Read about how organ donation works for details about joining the NHS Organ Donor Register.

Even though there is a significant number of people on the register, most people will not die in circumstances that allow them to donate their organs. This makes it more important that as many people as possible join the register.

You should discuss your wishes with your family and medical staff so they are aware.

Checking for a match

When an organ becomes available for donation, it is checked to make sure it is healthy. The blood and tissue type of both donor and recipient are also checked to ensure they are compatible. The better the match, the greater the chance of a successful outcome.

People from the same ethnic group are more likely to be a close match. Those with rare tissue types may only be able to accept an organ from someone of the same ethnic origin. This is why it is important that people from all ethnic backgrounds register to donate their organs.

Types of donation

There are three different ways of donating an organ. These are known as:

• donation after brain stem death
• donation after cardiac death
• live organ donation

These are described below.

Donation after brain stem death

Most organ donations are from brain stem dead donors. This means the donor has been confirmed brain stem dead following a severe brain injury. The circulation is supported by artificial ventilation until the donated organs have been removed.

Heartbeating donations have a high success rate because the organs are supported by oxygenated blood until they are removed.

Donation after cardiac death

Organs and tissue can also be donated after cardiac death. In the UK, almost all donors of this type are people who have died in intensive care from severe brain injuries, but who are not quite brain stem dead.

In these cases, the organs must be removed within a few minutes of the heart stopping to prevent them being damaged by a lack of oxygenated blood.

Live organ donation

A live organ donation usually involves one family member donating an organ to another family member. The relative is usually blood-related, most commonly a parent, although it could be a partner.

Following changes in the law, it is now possible to be an altruistic donor. Altruistic donors are unrelated to the patient but become donors as an act of personal generosity.

Kidney donations are often made from living donors, as a healthy person can lead a normal life with only one working kidney.

Read more information about living donation.

The shortage of organs has led to more people receiving organs from living donors. Although this involves carrying out major surgery, results are often very successful.

Before a living donor transplant can take place, strict regulations must be met and there must be a thorough process of assessment and discussion.

See below for more information about the regulations and assessment process.

Living organ donations

Kidneys are the most common organ donated by a living person. This is because it is possible for a healthy person to lead a completely normal life with only one working kidney. Nearly one in three of all kidney donations are from living donors.

It is also possible for part of a liver to be transplanted, and in some circumstances it may also be possible to donate a segment of lung. In a very small number of cases, part of the small bowel has also been transplanted.

Who can be a living donor?

Close relatives are most likely to donate an organ to a loved one. However, it is possible for a donation to be made by someone not related or connected to the recipient.

Living donation will only go ahead if the blood group and the tissue type of donor and recipient are compatible.

Read about how organ donation works for more information about ways an organ can be donated.

Success and survival rates

Kidneys from a living donor last longer than those donated from someone who has died.

Research has shown that in people who receive a kidney from someone who has died:

• 80-90% of kidneys will still be working after one year
• 77% of kidneys will still be working after five years
• 58% of kidneys will still be working after 10 years

However, in kidney transplants where the kidney is donated from a living donor:

• 95% of kidneys will still be working after one year
• 84% of kidneys will still be working after five years
• 66% of kidneys will still be working after 10 years   

Survival rates are also increased for people who receive kidneys from live donors rather than from donors who have died.

The survival rates of patients who receive kidney transplants from live donors are:

• 94% will still be alive five years after the transplant
• 85% will still be alive 10 years after the transplant

For those who receive kidney transplants from donors who have died:

• 85% will still be alive five years after the transplant
• 61% will still be alive 10 years after the transplant

Regulations and assessment

The Human Tissue Act 2004 and the Human Tissue (Scotland) Act 2006 provide the legal background for living donation in the UK. It is regulated by the Human Tissue Authority (HTA).
 
The HTA consists of 12 members, including 11 members from medical and scientific backgrounds, appointed by the Secretary of State for Health. The HTA’s role in living donation is to ensure that: 

• donors are not put under pressure to donate an organ
• no payment is made for the donation (paying for donated organs is illegal in the UK)  

After the organ donor and the recipient of the donation have been assessed by the transplant team, an independent assessor from the HTA will assess the donor. They will make sure that all the legal requirements for the donation have been met.

You can visit the Human Tissue Authority (HTA) website to find how organ donations are assessed and regulated.

Organ donation can lead to life-saving transplants or help improve a person’s health and quality of life. It is also possible to donate tissue.

There are several different types of organ transplants and the reasons why they may be used can vary. Organs that can be donated include:

• kidneys
• liver
• heart
• lungs
• small bowel
• pancreas

A number of other body parts can also be donated (see tissue donation).

Kidneys

A kidney can provide a better quality of life to someone who has end-stage renal failure (ESRF). Renal failure is where the kidneys stop working properly.

Kidney transplants give better long-term survival rates and quality of life than dialysis (where some of the kidney’s functions are artificially replaced). Kidneys used for transplant can come from a living person or from someone who has died.

The demand for donated kidneys is higher than for any other organ. More than 1,599 kidney transplants were carried out during 2011-12. The number of living donor kidney transplants being performed is also increasing, with 1,009 kidney donations from living donors being carried out during the same period.

Read more information about kidney transplants.

Liver

A liver transplant is often considered for people with end-stage liver disease. In around 86% of cases, transplanted livers still function well a year after surgery.

In 2011-12, a total of 726 liver transplants were carried out in the UK. For adults, the average waiting time for a liver transplant is around 142 days, and for children it is about 78 days.

Read more information about liver transplants.

Heart

Most heart transplants are carried out on people with severe heart failure caused by coronary heart disease or cardiomyopathy (diseased heart muscles) who can no longer be helped by medication or other surgery. The survival rate after one year of having a heart transplant is approximately 85%.

In 2011-12, around 141 heart transplants were carried out in the UK. The average waiting time for a suitable heart to become available for transplant is around 253 days.

Read more information about heart transplants.

Lungs

Lungs can be damaged by illnesses such as cystic fibrosis (where the lungs become clogged with thick, sticky mucus), or respiratory conditions such as chronic obstructive pulmonary disease (COPD), which are often the result of smoking.

Patients are considered for lung transplantation when their lung function cannot be significantly improved by medical therapy or surgery. Lung transplants have a 77% success rate one year after surgery, and heart-lung transplants have a 73% success rate.

Around 175 lung transplants are carried out in the UK each year. The average waiting time for a lung transplant is around 412 days.

Read more information about lung transplants.

Small bowel

A small bowel transplant (intestinal transplant) is usually recommended if there is not enough bowel left to absorb nutrition (short bowel syndrome), and when the patient is having difficulty with total parenteral nutrition (TPN). TPN is where nutrition is given intravenously (through a vein).

Small bowel transplants are often performed at the same time as a liver and pancreas transplant. This is called a multivisceral transplant.

Small bowel transplants are fairly uncommon. Only 22 intestinal transplants were carried out in 2011-12. On average, patients wait six months for a transplant of this type.

Read more information about a small bowel transplant.

Pancreas

A successful pancreas transplant is the only treatment that can restore complete insulin independence and blood sugar levels in patients with type 1 diabetes.

In 2011-12, 37 pancreas only and 173 pancreas and kidney transplants were carried out in the UK. The average waiting time for a combined pancreas and kidney transplant for an adult is around 278 days.  

Read more information about pancreas transplants.

Tissue donation

Unlike organs, tissue can be donated up to 48 hours after the heart has stopped beating. The tissue can be used to treat a wide variety of conditions, some of which may be life-threatening.

The most common tissues that can be donated are:

• the cornea (the transparent layer of tissue at the front of the eye)
• bone
• skin 
• heart valves
• tendons
• cartilage

It is possible to retrieve tissue from a donor up to 48 hours after a person has died. This is very useful because it allows tissue to be screened for possible infectious agents, and enables a pool of available tissue to be established.

Corneas

Corneas can be transplanted to restore the sight of a person who has an eye condition or eye injury. Patients closest in age to the donor are usually selected as recipients, wherever they live in the country.

Cornea transplants can be carried out under either a general or local anaesthetic. Between 2011-12, 3,521 people had their sight restored through a cornea transplant. 

Read more information about cornea transplants.

Heart valves

Heart valves can be used to help children born with heart defects. They are also used for adults with diseased or damaged valves.

Bones

Bone can be used to help improve or restore mobility. Bone grafts can also be used in a variety of orthopaedic procedures (those that involve muscles, joints, tendons, ligaments and nerves), including joint replacements and spinal surgery.

Bone transplants can also prevent a limb from being amputated (surgically removed) in people with bone cancer.

Skin

Skin can help save the lives of severe burns victims. A skin graft helps reduce pain and prepares underlying tissue for later treatment. It also helps reduce scarring. However, it can take a number of grafts to treat a severely burned patient successfully.

Tendons

Tendons are tough, flexible tissues found throughout the body which connect muscles to bone and cartilage. Donated tendons are usually used to reconstruct injured knees in young people, usually following sports injuries.

Cartilage

Cartilage is used to help reconstruct parts of the body following injury or during joint replacement surgery.

Common reasons for cartilage transplant include injury or wear caused by disease, such as osteoarthritis (a common type of arthritis that causes inflammation of the bones and joints).