A complete guide to organ donation

There’s no doubt about it, organ donation saves lives. But what’s involved in becoming a donor? What organs are needed most, and what are the risks in donating to a friend or family member? Our handy guide will help you make one of life’s most important decisions.

Should I donate my organs after death?

Our doctors and nurses rely on organ donors to help save or improve the lives of thousands of people, every year. 

According to the NHS Blood and Transplant Annual Activity Report, there are around 6,000 people currently waiting for a transplant. Without the generosity of donors, these people simply can’t be helped. The stats speak for themselves: 

• Three people die every day due to a shortage of donated organs
• Of the half a million people who die each year in the UK, only around 5,000 are able to donate their organs 

Source: NHS Blood and Transplant

Some people opt out of the NHS Organ Donor Register (ODR). Others don’t feel comfortable with the idea or aren’t eligible to donate. Many are simply confused. This guide gives you all the information you need to make an informed decision on whether to be an organ donor.

What is the transplant waiting list?

Organ transplants are one of the most important achievements in modern medicine. A surgeon’s ability to remove healthy organs from one person and transplant them into someone whose organs have failed or been injured, is lifesaving.

But as amazing as transplants are, they don't happen as often as they could. Not everyone is opted into the NHS ODR, and many relatives aren't willing to donate their loved ones’ organs. This means there’s always a long waiting list for transplants.

How long do you have to wait for a transplant?

Average waiting times can vary, depending on the organ and whether you're a priority patient. The wait can be nerve-racking, as unfortunately, the number of people waiting for a transplant has always been higher than the number of transplants completed each year:

Source: Transplant activity in the UK

Even though the number of people needing a transplant has come down slightly over the last few years, many people still have to wait years for the organ they need - the wait for some organs is longer than others. According to NHS data, the average time a person spends on the waiting list for a kidney transplant is two and a half to three years.

Patients on waiting lists with rapidly deteriorating health can also register for an urgent heart, lung or liver transplant. In some cases, it’s possible to register the transplant need as 'super urgent'.

The wait for a transplant could be weeks, months or years, but the call for a transplant could come at any time. That’s why patients are usually told to have a bag packed and be ready to go into hospital at short notice.

When an organ becomes available, a computer uses strict guidelines to make a list of potential matches. Children and young adults are given priority, as it’s more likely they’ll have longer-term benefits. For older adults, a scoring system is used. It’s based on things like:

• How long you've been on the waiting list
• How well matched the donor is in terms of tissue type, blood group and age

However, if you’re on the transplant list, don’t give up hope. It’s important to carry on living life as normally as you can. Waiting can feel like your life’s on hold and often people suffer more health problems in the meantime.

How important is organ donation?

In 2015, a 14-hour film titled The Wait was released. It captured a day in the life of Simon Howell, a patient waiting for a kidney. The film shows his ongoing struggle, as his day is broken up by four life-saving sessions of dialysis.

Simon describes his unbearable fatigue and his family live in constant uncertainty about the future. “I’m in limbo,” he says. Only an organ transplant can change that.

At the launch of the film, Sally Johnson, NHS Blood and Transplant Director of Organ Donation and Transplantation, asked people to imagine how they’d feel if someone close to them was waiting for a transplant. “I'm sure we'd all hope an organ would be available to help someone we love – so shouldn't we all pledge to be organ donors so more lives can be saved?”

Which organs are most-commonly transplanted?

Kidneys

Your kidneys filter all the waste from your blood, turning it into urine. If a kidney stops working, harmful fluids build up and your blood pressure can rise. Kidneys are dark red, and roughly fist-sized. They sit below the ribcage towards the back of your body. You can live with one kidney as the other will grow to compensate.

Pancreas

Found in your abdomen, your pancreas produces insulin to control blood sugar levels in the body. When a pancreas isn’t working, blood sugar levels rise and can cause diabetes. It’s also responsible for producing chemicals to help with digestion.

It’s possible to live without a pancreas if you take insulin and enzyme supplements.

Liver

The liver is the largest internal organ. As part of your digestive system, your liver produces bile to clean out your body. It helps get rid of toxins and regulates blood sugar levels.

If your liver isn’t working properly, you can feel tired and sick, have a loss of appetite, or pass brown urine.

Heart

The heart pumps blood around your body, carrying vital oxygen and nutrients. Without a heart, your body wouldn’t get the oxygen it needs.

Lungs

Your lungs breathe in air, absorbing oxygen and transferring it to the rest of your body. These organs are also responsible for clearing carbon dioxide from your blood. It’s possible to have a single or double lung transplant, or a simultaneous heart and lung transplant.

Cornea

The cornea lets light into your eye. Without them, you wouldn’t be able to see.

Small bowel

Your small bowel absorbs the nutrients and minerals from food, before passing it on to the bowels. Around 90% of the food we eat enters the blood through the wall of the small bowel through highly specialised cells. Without it, you can’t digest food and would need to get nutrition in another way – through a drip, for example.

Tissue

Tissue is a group of functioning cells. A donation of tissue could be skin, bone or even a heart valve.

Waiting too long for a transplant can have severe consequences. Sadly, in 2021/22, 429 patients died while waiting for a transplant (compared to 525 in 2020/21) and a further 644 were removed from the transplant list due to deteriorating health and ineligibility for transplant.

That’s why organ donation is so important – it helps people to enjoy a better quality of life, for longer.

Why register a decision to donate your organs?

The UK law has changed in recent years, meaning that everyone in England, Scotland and Wales over the age of 18 is automatically 'opted in' to the Organ Donation Register (ODR).

This means it's now assumed that you consent to donating your organs when you die, unless you opt out or are exempt.

If you really don't want your organs to be used, or you prefer to choose which organs to donate, you can register your decision on the NHS Organ Donation website. Even if you're perfectly happy to donate, it's a good idea to register your choice, as it lets the right people know that you give consent for your organs to be used when you die. It can be uncomfortable to think about, but it’s important to make your wishes known.

In the UK, around 27.7 million people have registered their consent on the ODR. They’ve made the decision to donate their organs and/or tissue after their death. The list is confidential and only used by medical staff to find out whether someone wanted to donate.

Amazingly, one organ donor can save or transform up to nine lives. Many more patients can be helped by the donation of tissue. Transplants really are life changing.

How to register your decision

If you're keen to find out more and confirm your choice, you can: 

• Fill in an online form – it takes less than two minutes to let the NHS know that you'd like to register to donate, withdraw your decision, amend your registration or opt out from the ODR
• Alternatively, you can call the NHS’s 24-hour donor line on 0300 123 23 23

You've also got the choice to register your decision when you:

• Apply for a driving licence
• Register at a GP surgery
• Apply for a European Health Insurance card

When you register to donate, you can choose to donate some organs or all of them, it's completely up to you. 

How to make a living donation

You don't have to die in order to donate your organs and help others. You can become a living kidney, liver or tissue donor. To do this:

• Contact your local kidney transplant centres
• Contact your local liver transplant centres
• Email: enquiries@nhsbt.nhs.uk
• Call the National Tissues Referral Centre on 0800 432 0559
• Email: national.referral.centre@nhsbt.nhs.uk

Types of organ donation

Donation after death:

When you die, you can donate the following:

• Kidneys
• Heart
• Liver
• Lungs
• Pancreas
• Small bowel
• Corneas
• Tissue

A transplant will help someone whose organs aren’t functioning properly. Remember: always inform your family of your preference, so they can make sure they follow your wishes.

Living donations

A living donation means you don’t have to wait until someone dies to receive a replacement organ. When you sign up to donate, you’ll be assessed to see whether it’s safe for you to have an organ removed, and whether you’re a match for the patient. Living donors can be anyone – strangers, family or friends. You can donate:

• Kidneys. A healthy person can lead a normal life with one kidney. Around a third of kidney transplants in the UK are from living donors.
  
• Liver. You can give part of your liver to someone with liver failure who needs a transplant. Liver transplant operations are performed on patients with end stage liver disease, primary liver cancer, and children with metabolic diseases.
  
• Tissue. Living donors can donate bone and amniotic membrane – that’s part of the placenta. If your baby is delivered by caesarean section, doctors can use it in eye surgeries to help wounds heal fast. You can donate your femoral head if you are having a total hip replacement. Other donated bone is used to restore health and mobility.

Are you suitable to be a living donor?

Before you can be a living donor, you'll have to undergo several tests to check you’re fit and healthy enough to donate. The process involves doctors, coordinators, psychiatrists and independent assessors. You’ll have a Living Donor Coordinator to guide you through the process.

As a potential donor, you’ll be subject to a psychological assessment. Being scared or feeling guilty about doubting your decision is normal. Going through a living donation is emotional, so the health professionals need to make sure you’re going to be okay afterwards. Both physically, and mentally. 

Am I eligible to be an organ donor?

Anyone can be on the organ donation register. Age isn’t a barrier – people in their 70s and 80s have become donors and saved lives. In the UK, the oldest living person to donate a kidney was 85. Most medical conditions aren’t barriers to donation either.

What are the key restrictions to organ donation?

There’s not a lot to stop you from donating. In fact, very few medical conditions will mean you aren't eligible to donate. These restrictions are:

• Creutzfeldt-Jakob Disease (CJD)
• Organs that risk transmitting an infection or cancer

Otherwise, a decision will be made whether to use your organs and/or tissue based on strict medical criteria. For example, it’s possible to donate organs that have been affected by cancer in the past. Surgeons are trained to balance the risk of using an organ against the risk of a patient dying because they don’t have the transplant.

Can my family block consent for my organs to be donated?

When you die, your family will be asked to support your decision to donate organs and tissue if you've registered your choice on the ODR. If you haven't, you will be automatically 'opted in' and your family will be consulted throughout the process.

Before the change in law, the NHS said family refusal was the biggest obstacle to organ donation. Around 90% of families agreed to organ donation if they already knew of their loved one’s wishes. However, less than 50% agreed if they'd never had the conversation. That person might have signed up to the ODR, but their organs weren't donated because their family vetoed the decision.

With automatic opt in, this pressure has been taken away from families. They have no legal right to overrule your decision or block organs being donated. 

So, whatever your choice, discuss it with your family. As difficult as it may be, making your wishes clear to them will reduce their distress later on. 

Organ donation FAQs

Being an organ donor is a selfless act. But understandably, you'll want to have all the facts before making such an important choice. Here are the answers to some common questions:

Does organ donation affect viewing of the body?

Doctors remove all organs and tissue with great care. Surgical incisions are carefully closed and covered. Arrangements for viewing the body after donation are the same as immediately after death.

Does it stop you having an open-casket funeral?

Being an organ donor doesn’t stop you having an open-casket funeral. No-one will see any difference, as you’re clothed for the burial.

Can you donate your organs if you’re under 18?

Yes. Minors should tell their parents of their organ donation wishes. Parents can then give consent, should the worst happen. There are always children on the transplant waiting list. These patients usually need smaller organs than an adult can provide. Having child donors improves this situation and can provide comfort to the grieving family.

Am I too old to donate my organs?

It’s down to healthcare professionals to decide to use your organs or tissue. They make these decisions based on a medical assessment – not age. As such, there’s no age limit for donating.

Does the UK buy or sell any organs?

It’s illegal to buy or sell human organs and tissues in the UK.

Will my organs be used for research? 

Doctors can only use your organs and tissue for medical or scientific research with permission from your family.

Organ donation around the world

Most people agree that organ donation is a good thing, but the process is different all around the world. Let’s take a closer look at how countries deal with organ donation.

In December 2015, Wales was the first UK nation to make organ donation automatic 'opt-in' for all residents over the age of 18. That means that unless you make it known you don't want your organs to be used after death, they will be. 

Following the launch of the 'soft opt in', Wales now has the highest organ donation consent rate in the UK, at 77% (up from 58% in 2015). England, Scotland and Jersey have now followed suit, with Northern Ireland working towards launching an opt-out system by Spring 2023. 

"Every organ donation is a potentially life-saving gift. I am very pleased to see the consent rate continue to rise in Wales. It shows the introduction of the pioneering opt-out system is having a real effect and it is great to see England and Scotland now following our lead". Vaughan Gething, former Welsh Health Secretary.

Elsewhere in the world, organ donation and transplant rates vary.

Brazil chose a hard opt-out system in 1997. Eight years later, they returned to the earlier opt-in process. But why?

The country faced problems as families weren’t allowed to overrule the system, enabling doctors to remove organs when family members knew the deceased would have objected. Brazil had ignored the possibility people weren’t well-informed enough.

In France, there’s a soft opt-out organ donation system, like the UK. Consent is presumed, but the deceased’s family has the final say. This helps to balance respect for family rights and the burden of decision.

It’s a similar process in Spain. The country is often considered the gold standard for organ donations, accounting for 20% of EU donors. In 2021, 4,781 transplants were performed in Spain. For every one million people, the country has 40.2 people who have opted in to donate.

To keep refusal rates low, better awareness about the importance of organ donation is needed. This is where the UK can improve.

Source: International Registry in Organ Donation and Transplantation (PDF)

The benefits of an opt-out system for organ donation

All adults in England, Scotland, Wales and Jersey are now considered potential organ donors. This is unless they choose to opt out or are in one of the excluded groups.

Organ donations are an emotional experience. Donors – living or deceased – offer an amazing gift. Anything a country can do to support more donations is beneficial. An opt-out system promises just that – more donors and more transplants. That’s because unless there’s evidence that a person didn’t agree to transplant, their organs will be available. To break it down, here are the key benefits:

• Many more operations can be carried out each year due to the ‘opt out’ system.
• There’s reduced emotional pressure on families to decide
• It overcomes the issue of people ‘forgetting’ to sign up to organ donation, or not making their wishes known

What’s more, advances in medical science mean the number of people whose lives could be saved by a transplant is rising. Opt-out offers a way of keeping up.

Is organ donation forbidden in religious communities?

There are many misconceptions about organ donation. For example, people think it’s against many religious beliefs, but that’s not the case. In fact, the major religions in the UK support organ donation and transplants. This includes:

• Christianity
• Islam
• Judaism
• Buddhism
• Hinduism
• Sikhism

In 2014, Pope Francis described the act of organ donation as a ”testimony of love for our neighbour.” If you’re not sure about your faith’s position on donation, simply ask your religious leader. Community leaders are there to help with this kind of decision. But ultimately, it’s a choice you should make yourself.

Why aren't there enough BAME organ donors?

In the UK, black, Asian, and other minority ethnic (BAME) people are under-represented as organ donors. The NHS need more BAME donors because:

• Some blood and Human Leukocyte Antigen (HLA) types are more common among ethnic groups
• Some ethnic groups are more likely to develop medical conditions that need blood, organ or tissue donations
• People who need bone marrow are more likely to find a match with someone with a similar ethnic background

Currently, BAME patients have to wait much longer than white patients. For a kidney transplant it’s around a year longer, solely down to the lack of suitable organs.

According to NHS Blood and Transplant, in 2020/21, 8% of donors were from Black, Asian and minority ethnic communities. By contrast, these ethnicities are estimated to represent 14% of the UK population.

However, the number of transplants taking place on black, Asian and minority ethnic patients is rising, as more people feel comfortable registering their consent on the ODR and talking to their families about their wishes.

Top tips from the experts

Faced with the potential of organ donation, there's lots to consider. The advice of experts offers great support to individuals, groups and families.

Here’s US Transplantation Expert Andrew Cameron on the risks and recovery for a living organ donor:

Just like any other major surgery, there are risks and a period of critical recovery time for transplantation surgery. But living donation doesn’t change life expectancy. Most donors will go on to live a healthy life after recovering from surgery – which takes around six to eight weeks. Here’s what you can expect:

• For kidney donors, the remaining kidney will enlarge slightly because it has to do the work of two healthy kidneys
• For liver donors, the liver regenerates and regains full function

Specific donor-related risks should always be discussed with your transplant team.

Dr Rafael Matesanz, medical director of the Organizacion Nacional de Trasplantes in Madrid, says of Spanish organ donation:

Spain has the most impressive deceased organ donation rates in the world. It’s been this way for some time. Dr Rafael says the country’s success over the last 20 years is down to being prepared in intensive care.

Spain has doctors acting as transplant coordinators in intensive care at every hospital. They take a lead role in spotting potential donors. These doctors can approach the patient’s family and prepare them with their options earlier on.

"Most donors are lost not because the family refuses, but because potential donors are not detected adequately," said Dr Matesanz.

Source: BBC

Organ donation is a necessity. It’s a selfless act that can help save and improve the lives of many others. With the details contained in this guide, we hope you can make an informed decision about donation, register your choice to be an organ donor and share your wishes with family and friends.

Remember, just one donor can save or transform up to nine lives. Many more can be helped through tissue donation.