Frequently Asked Questions.

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

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

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

In the UK the family has the 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.

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.

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.

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.

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.

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

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.

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.

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.

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.

Organ donation is different to medical research. If you have chosen to donate your organs, then your body cannot be used for medical research (except for your corneas, which can still be donated). People who decide to donate their bodies to medical research do so via a completely different process which you can read more about here: www.hta.gov.uk

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.

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

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.

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

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.

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.

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.

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

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.

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.

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.

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.

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.

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

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.

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

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

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

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.

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

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

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

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. 

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