What you need to know about organ donation

What is the NHS organ donation service, and why is it so important?

Holly, Head of Marketing

NHS Blood and Transplant are responsible for facilitating the process of becoming an organ donor and manage the NHS organ donor register (ODR).

From a clinical perspective, we have specialist nurses for organ donation (SNODs) who provide care and support to the family of a donor throughout the donation process.

Sarah, Marketing Manager

Our aim is to encourage people to join the organ donor register, because being on the organ donation register is the best way for their decision to be respected and honoured by their family.

One person can save up to nine lives being an organ donor, and even more if they also donate tissue.

What is the role of the NHS Organ Donor Register?

Holly

The ODR is important because it offers confirmation to families that this is what their person wanted. Some families have said how much comfort that has brought them.

The people that are able to be organ donors most often die in quite sudden circumstances, such as a brain haemorrhage or stroke, and in a hospital intensive care unit or emergency department. In cases like these, there isn't time for the family to have a discussion whilst their person is in hospital about whether they wanted to be an organ donor.

What does the organ donation process look like?

Holly

Healthcare professionals have a duty of care to save your life first. If someone is dying in hospital, once everything's been done to try and save that person and end-of-life planning has started, organ and tissue donation will be considered as part of that end-of-life planning. The key steps are:

• the specialist nurse will check the organ donor register before speaking to the family to see if there's a decision recorded.
• The specialist nurse will then speak to the family, and when the time is right, they will bring up the topic of organ donation.
• If a family agrees, the specialist nurse will check the patient’s medical history and notify the NHS Blood and Transplant (NHSBT) team, who have the list of patients waiting for a transplant. There are a lot of considerations – for instance, the donor patient and the recipient patient need to match by blood group and tissue type.
• NHSBT will speak to all the transplant centres and line up the patients that are going to receive the organs that have been donated. The organs from one person can go to different places around the country, depending on where those patients are.
• Finally, the recipient patient will get a phone call to say ‘we think we've got a match for you’, and they start mobilising to get into hospital where the organ's going to be received.

Sarah

These teams are on call, ready to go wherever they need to. They have to mobilise quite quickly as organ donation and transplantation needs to happen within a certain timeframe to make sure the organs remain viable for transplant and to make sure the patient is ready for when the organs arrive.

What challenges are you facing with organ donation?

Holly

Organ donation is really rare - only 1% of people who die do so in circumstances where they're able to donate. This is because donors are typically those who have died in a hospital intensive care unit or emergency department. That’s around about 6,000 people a year that could potentially be an organ donor.

The waiting list is the highest it's ever been, and sadly, on average, somebody dies every day waiting for an organ transplant.

Is it useful to include thinking about organ donation alongside other later life and funeral planning?

Holly

Yes - we want people to record their choice to be an organ donor (if that’s what they want) in their lifetime.

The research suggests that one of the main barriers for people registering as an organ donor is that they just don't want to think or talk about their death. So if someone is already thinking about later life planning, it feels like a natural point where organ donation could be considered.

Sarah

We have a few tips on our website on how to talk with those closest to you about organ donation. For example, why not try when you're in the car or out on a walk? Talking when you’re side-by-side can be easier than when you’re face-to-face.

Holly

Another bit of advice is to remember that people don't have to necessarily agree with your decision; they just need to know what it is. Organ donation is not for everybody, but it's about making sure that your family knows your decision.

Arrange your free 45-minute My Funeral Wishes consultation with Poppy’s.

What concerns or myths would you like to dispel about organ donation?

Sarah

There’s a myth amongst the public that if you're on the register, you won't be saved if you need to go into hospital. Every effort will be made to save your life above all else and nobody knows what a patient's decision is on the register until end-of-life care has begun, and only the specialist nurses access the register.

Holly

We also hear concerns about the donation process itself. But when someone donates their organs, it's treated as any other operation. The organ donor process involves a specialist team who ensure that donors are treated with the greatest care and with dignity, out of respect for the patient and their family, and to make sure the organs are in the best possible quality to then be transplanted.

Some people worry that organ donation will delay funeral arrangements or choices such as cremation or burial. It doesn't - everything can still go ahead how that person wanted it to happen. Our specialist nurses always speak to your family to see if there are considerations around your faith, beliefs or culture with respect to funeral plans.

The family can also still visit and spend time with their person after they’ve died, just like they would after any other death.

What else do you wish people knew about organ donation?

Holly

The most important thing that I would want people to know is that while we have moved to an opt-out system for organ donation it's still important that people who want to donate their organs register their decision - because being on the register gives your family the certainty that this is what you what you wanted.

I’d also like people to know that the specialist nurse can make sure that donation goes ahead in line with a person’s faith or beliefs. They can take handprints of the donor, or other little things that will help the family come to terms with their loss, and have a memory of this remarkable thing that their person did, even as they died.

One final detail is that a lot of people repeat their registration on the organ donation register - which is actually a helpful thing to do. It can be validation to their family that it’s still what they want to happen, especially if they first registered years or even decades ago.

Sarah

Lots of people say, ‘you wouldn't want my liver’! But it's always worth registering because the clinicians at the time of death will decide whether those organs are suitable for donation. The oldest organ donor was in their 80s when they died.

What's your favourite thing about the work that you do?

Holly

When we hear from patients who have had their life saved through organ donation, it is really rewarding.

We also get to hear from families of donors and it’s motivating to know that, because somebody registered their decision to be a donor, the family knew what to do, and it's brought them both comfort and pride. We have shared some amazing stories from organ donations, such as a mum who has met the recipient of her son's heart donation and has heard her son's heart beating in somebody else - which is absolutely incredible.

Sarah

A heart transplant gave one friend of mine twelve extra years to live. You just can't put a price on that.

To find out more about organ donation or to register if that is what you wish to do, visit the website.

At Poppy’s, we believe your choices matter. If you’d like to explore your own funeral wishes, you can arrange a free 45-minute My Funeral Wishes consultation with Poppy’s.