Frequently Asked Questions

What is the Organ Donor Register?

The NHS organ donor register is a list of people who want to donate and people who do not want to donate their organs and/or tissue to help save or enhance lives. Source: www.organdonation.nhs.uk

How do I register to be a donor?

You can register your choice by following this link to the NHS organ donation website. It takes just 2 minutes to register. Click here.

Can I change my mind about being a donor once I’ve signed up?

By going onto the NHS organ donation website or calling 0300 123 23 23 you can change your preferences or remove yourself from the organ donation register altogether. www.organdonation.nhs.uk

I’m on the organ donor register, can family stop my organs from being donated when I die?

In the UK the family always get final say, which means if you haven’t discussed organ donation with them, they can still say “No” and even overrule your decision. At present, around 43% of families say “No”, so sharing the reasons for your decision will help them honour your choice.

What is Max and Keira’s law?

This is the name for the law that was passed to create a new ‘presumed consent’ or ‘opt out’ system for the NHS organ donor register in England. It was named after nine-year-old Keira Ball who died in a car accident, and whose heart was donated to Max Johnson after his heart failed following a viral infection.

What does ‘opting out’ of the NHS organ donor register mean?

Once the new system comes in, everybody over the age of 18 is considered a possible organ donor unless they have recorded a decision to ‘opt out’ or are in one of the excluded groups. Excluded groups are those who have not lived in England for a period of 12 months, people under the age of 18 and people who lack mental capacity. This system could be in place by 2020.

With the new ‘opt out’ system, can I still choose to donate or not?

Yes –  everyone can still make their own decision, but unlike the previous system where people actively ‘signed up’ to be an organ donor, anyone over 18 (with exclusions) will be added to the organ donor register as a potential donor. Therefore, people have to actively ‘opt out’ by visiting the NHS organ donor website.

How does the ‘opt out’ system affect families having the last say on organ donation when someone dies?

Families will still be involved before donation takes place. This is important to ensure that any recorded decision on the NHS Organ Donor Register was the person’s last known wish around organ donation. If a family is approached and the person who has died has not recorded an organ donation decision, the family will be asked whether they have any information that shows that their loved one did not want to be an organ donor.

How many people are currently in need of organs in the UK?

In 2018 there were about 6,000 patients on the UK transplant list.

Do people waiting for organs always receive them?

No. On average, three people die every day whilst waiting for an organ transplant. Of these, 20% are from black, Asian and minority ethnic groups.

How many people donate their organs every year?

Last year 7,500 people in the UK died in situations where it was possible to donate organs. Only 1,500 of them were registered donors.

Do I need to tell my family that I’ve chosen to donate?

It’s vital that you share your choice with family, partners and even close friends, because in the UK when someone dies, these are the people who get final say on whether that person donates or not. At present, 43% say “No” and even if someone has chosen to be a donor they can overturn that decision. Just over a third of people in the UK have told their partner or family that they want to donate. Discussing organ donation with family and friends helps everyone to understand and honour each other’s choice.

Do doctors do any tests to make absolutely sure donors are dead?

Doctors will always try to save a patient’s life first: organ donation is only considered if a patient’s life cannot be saved and only goes ahead after they have died. At the time of death, medical teams do more tests on people who have agreed to organ donation, than those who haven’t.

If someone decides to donate all their organs are they offering their body for medical research?

Organ donation is different to medical research – if choosing to donate organs then a body cannot be used for medical research; the only donate-able parts are the corneas.  People who decide to donate their bodies to medical research do so via a completely different process, you can read more about it here: www.hta.gov.uk

Do you have to be in a certain state of health to donate organs?

The NHS website gives a few guidelines on circumstances where donation might not be possible, such as, if a patient is HIV positive, carries Creutzfeldt-Jakob disease or has had cancer in the last twelve months. It’s worth noting however, some HIV donors have been able to donate to HIV-positive patients.

Do you have to be within a certain age range to donate organs?

The decision to use organs is based on strict medical criteria at the time of death – and age usually has no bearing on this.

Can I register as an organ donor even though I’m under 18?

You can join the organ donor register but then need to have the conversation with parents or guardians so that they can give their consent.  If it’s something you want to do, then it’s worth discussing the reasons for your choice, so that they can fully understand your decision to do so.

Is there an upper age limit on being an organ donor?

No. In 2016, organs from a woman aged 107 were donated on to those in need of organs.

Is there a lower age limit to be an organ donor?

The age of consent to be a donor is 18, however the decision from a person under 18 years of age, who is deemed competent to make that decision, is treated the same as if they were an adult. In other words, age has no bearing on your choice to be an organ donor as long as you make your choice known to your family.

Are donor organs only received from patients who have suffered brain stem death?

The Maastricht classification also allows for organs to be retrieved from patients who have suffered a circulatory death – or cardiac arrest.  This could be an unexpected cardiac arrest – when a patient cannot be resuscitated – or following an expected cardiac arrest. For example, an expected cardiac arrest happens when treatments have been withdrawn from a gravely ill individual because continued treatment is of no benefit to them.

Should people who don’t lead a healthy lifestyle avoid choosing to be a donor?

Doctors test and assess the quality of organs at the time of death to see if they can be used for donation. Most people who can’t donate organs can still donate tissue.

Is it really possible to donate sight?

Corneas are “tissue” donations and donating them will enable someone to see. 

How many people could be saved by one person’s decision to donate?

As many as eight lives can be saved by just one person donating their organs and more if you choose to donate tissue. Medical teams do what they can with the organs and tissue they receive, and ensure that the wishes of their donor are met to the very best of their potential.

Which organs can be used for transplant?

It’s not just organs that are used for transplant; tissue such as corneas, heart valves, skin and bone can be used to save and improve lives. There are eight organs that can be used, and the most common transplants are kidney, heart, liver and lungs, and the pancreas and small bowel can be donated too.

Can I select which organs I want to donate and which ones I don’t?

When you choose to be a donor, the NHS organ donor site enables you to select the organs you want to donate and the ones you don’t. Once registered, your choice can be amended at any time via the website, or by calling 0300 123 23 23.

Does ethnicity affect the ability to be an organ donor?

No. However, it is important to note that in the UK there are shortages of organs for persons with black, Asian and Middle Eastern (BAME) heritage. This is because there are certain blood groups particular to these ethnicities. Although many black and Asian patients can receive an organ from a white donor, for many the best match will come from a donor with the same ethnic background.

Are there less organs available for people from minority ethnic groups in the UK?

Of the people who signed-up to the NHS organ donor register in 2018, and told the NHS their ethnicity, only 7% were from minority ethnic groups. In turn, these groups are less likely to consent to donating a relative’s organs. This means that there are significantly less, suitable, organs available. Black, Asian and minority ethnic persons (BAME) make up one third of the kidney transplant list and around 31% of people waiting for an organ transplant are also from BAME communities.

Are any ethnic groups at higher risk of needing donated organs?

In general, around a third of people waiting for an organ transplant are from black, Asian and minority ethnic communities.

Do children get prioritised over adults for transplants?

Most adult organs are too large for children- lungs and hearts need to be matched for size.  There’s a severe shortage of organs for children, so, encouraging families to talk about organ donation and share their views is part of our mission here at Live Life Give Life.

If someone in my family, or a friend, urgently needs a kidney, can I be a living donor?

You can become a living donor and donate your kidney to family, friends or even complete strangers. If you decide to become a living donor, you will undergo extensive questioning to ensure that you are aware of the risks and that your decision to donate isn’t based on financial gain. You will also undergo testing to determine if your kidneys are in good shape and whether you can live a healthy life with just one kidney. You can find out more here  www.organdonation.nhs.uk/become-a-living-donor

How many people have donated a kidney to a stranger?

In the UK, 700 people have been an altruistic kidney donor to a stranger.

Do families pay to have their loved one’s organs donated?

No. However, if healthcare is being paid-for, then there may be costs for end-of-life care.

Do the surviving members of the family get paid for the organs that are donated?

Donation is a gift – it’s pure altruism. Organs are passed on, and re-implanted as and when they are available and can be used.

Is it true that people who have donated their organs can’t have an open-casket funeral?

Organ and tissue are removed in a discreet and dignified way which doesn’t impact on appearance for an open-casket funeral.

Is organ donation frowned-upon or ‘illegal’ in any religion?

Organ donation is consistent with the beliefs of most major religions including Christianity, Islam, Hinduism, Buddhism and most branches of Judaism. However, there are some cultural elements to take into consideration, so, our advice is to talk to a spiritual leader within that church or organisation and perhaps study scholars of that religion too. The choice to donate must feel right for each person and align with their respective beliefs and faith. The links below lead to further information drawn from external sites.

www.organdonation.nhs.uk/helping-you-to-decide/your-faith-and-beliefs

Can organs be bought if we can’t get them on the NHS?

The sale and trafficking of organs is illegal in most countries across the world, as well as being unethical and dangerous.

What’s the point of donation when I’ll never see who benefits?

Organ donation is an incredible legacy, and the more people making and sharing their choice means that there is hope for more adults and children desperately in need of life-changing organs. 

Where can I find out more?

If you have any other questions or would like to know more, please don’t hesitate to contact us. 

You can also visit www.organdonation.nhs.uk

Did you know?

There is no age limit for becoming an organ or tissue donor.

Did you know?

All of the UK’s major faiths support organ donation and transplantation.

Did you know?

1 organ donor can save the lives of 7 people.

We think we’ve got most of it covered

But if you can’t find what you’re looking for, feel free to email us at info@livelifegivelife.org.uk, because we know the people in the know.

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