Organ donation

Role of the specialist nurse is really important for families because they provide information about organ donation and the good that that can bring, and the lifesaving opportunity to help those people on the transplant waiting list.

Sometimes families are so in grief and shock that they cannot, they cannot, they struggle to listen to the information, so it’s important that the specialist nurses are able to support the families at this time to listen to the information so they can support their loved one’s decision.

So my name’s Andrew Morrison Lee. I’m the professional development specialist nurse the Northwest team.

But have been a specialist nurse in organ donation for just over nine years. So there’s different ways you can register a decision. The best way and the way that we kind of wanna promote really, is that people would join the organ donor register. So you can do that online or you can call, you can also register through things like your driving license or through your GP surgery or the leaflets that you’ll find in different locations.

And that would be to register a decision to opt in. That would also give you the option to select for organs and tissues you would or would not wanna donate.

So we’ve proven that for patients who have registered a decision that families are more likely to respect that decision.

When a decision’s unknown, that’s really difficult. We’re asking families on the worst day of their life when somebody’s dying to make really difficult decisions, and often it’s easier for them to just say no.

Whereas if you’ve discussed it and we know it’s something that you would want to save the lives of other people and your family are more likely to support that decision.

Hello, my name’s Jess.

I’m one of the specialist nurses in organ donation. The organ donor register is so important to us. It is a tool that we have that is something that we can show your family a decision that you have made about your wishes about organ donation.

When family, when we meet families, they’re in the, the depths of grief.

It’s usually after a, a huge event that has happened and they’re, they’re so, they feel out of control.

They’re, they’re lost, they’re frightened, and then we come along and bring the option of organ donation as an end of life care decision.

Being able to show a family a tangible fact, so something that you yourself has signed and completed with a wish that you have made when you may not have even spoken about your organ donation decision is so important to be able to share to the family and to show them that this is a decision that you’ve made and is also something that they can help support.

They can be part of that journey and help fulfil one of your, the final wishes that you’ve made.

It also brings up a way for us to talk about your organ donation decision, about your views and opinions, what you’d like and what you didn’t like.

The people that we speak to are the most important people in the world, the people that know you the best.

And so this process isn’t able to go ahead without them. They hold all of the most important information that makes transplantation as safe as possible.

My name’s Cathy Miller, and my role is Head of Education and Professional Development.

In terms of registering your decision to be an organ donor in the uk, there are multiple ways of doing this.

The most important ways to register your decision on the Organ donor register and let people know that you want to be an organ donor, you can tell your family as well that’s important that they share what your decision is regarding organ donation.

Registering your decision on the organ donor register is really important for specialist nurses because when that time comes, your family will want to support your decision and it is a really difficult time for your family.

They are often shocked and distressed by the loved one’s death, understandably so.

If you’ve registered your decision, that is a really firm and concrete decision that you want to help save others in the event of your death and your family are more likely to honour it and support that if they know that you have made that decision in writing.

Also, what helps is having that discussion with your family so they know exactly what you want. Regards the organ donor register.

What’s really positive and concrete about that is when we meet your family at that difficult time, we can have a printout of that and families get a sense of pride by seeing in writing your decision, that really helps give them comfort that they know that they are following and honouring what you wanted to have happen.

Hi, I am Tim. I’m a specialist nurse in organ donation.

Organ donation in the UK is now an opt out system. So all adults are presumed to consent to organ donation in the UK unless they register a decision not to donate.

So there are multiple ways you can register your decision. The most helpful for us is to document your decision on the organ donor register.

It’s also possible to notify us via your gp, via the DVLA when you apply for, or you renew, your driving license. Now, via the passport office, when you apply for or renew your passport, the register records your decision to whether or not you wish to donate your organs after you die.

It’s also then something that allows us to share that decision with your family. Families tell us when we have a conversation with them, if you are unfortunately at the end of your life in the intensive care unit, families say that having this information available to them really helps reassure them, as they can be really overwhelmed at this early stage of their bereavement.

And during this crisis we are able to show them your organ donor registration. And this is something that can also help them have conversations with the rest of their families as well.

So to let them know that you want to do this amazing thing and it’s a really amazing and emotional thing for all of us.

Okay, so my name is Matthew Coli. I’m one of the organ donation nurses for the Northwest region.

In terms of the organ donor register, it’s a really powerful tool that in my experience, families feel a lot of comfort from knowing that their relative has made a decision on the organ donor register.

You can sign up to the organ donor register just by going on Google and searching organ donation register NHS, and that’s how you sign up in the uk.

You can also register a decision when you renew your driving license, uh, and very soon your passport as well.

Yeah. So, it was my husband Gareth, and he had a bleed on the brain and a book on the brain.

And fortunately, they try and operate, but unfortunately, you know, it got to, it kept bleeding in his head.

So unfortunately, I think they classed at his brain death then, so he was, yeah. And he was in intensive care for a couple of days.

And obviously this brought on the talk about organ donation.

I did remember, because Gareth renewed his driving license and, he said, oh, just check this form for me.

So I checked him, he said, oh, I said, you’ve put down that you want to be an organ donor.

And he said, well, yeah, that, you know, that’s fine.

And I said, all right, okay. He said, yeah, he said, he said, what of people Gareth had just said, and, we can have what they want when I’ve gone.

So, yeah, so that when obviously they started talking to me about it at the hospital, when Gareth was in intensive care, Gareth’s parents were there as well, and I did remember him saying that.

And, you know, that we’d had, we had had a bit of very brief discussion about it.

I did remember him saying that.

So, yeah, so I kind of had a bit of a heads up on it in a way.

Wouldn’t say that made it any easier, but I knew that’s what he said he wanted to happen.

So it, you know, it did help a little bit in that, you know, that very difficult time to say that we’d had that conversation really.

Paul: Don’t think we ever discussed it really. And Ali mentioned that the thing about the driving, driving licenses, I’m pretty sure that there is a, there’s something on the driving license that says you now have to opt out rather than opt in.

Tom: Yeah.

Alison: Wasn’t that

Lucy: And, and no, we had. When we, when we got our driving licenses, you had to tick whether or not you would, and again, I feel like for all of us, it was just a Why wouldn’t you? Yeah. Well I think so I, I think it would’ve been a fleeting conversation in passing, like, well, of course I’ve ticked the box, but it wasn’t something we sat down and spoke about.

Alison: permission to speak. Growing up with, because they, all, three of them, and I have an inherited blood disorder, which means, well we’ve got, we’ve got it so it, it cytosis and it, it affects your blood. So we were all, they were in and outta hospitals when they were little, so had a lot to do with that. And Tom had leukemia when he was 10 or 11. So he needed a bone marrow transplant, which Anna gave him. So that’s a transplant in its own Right. So we, they’ve grown up around that and we’ve always had that and we both, we both work in the pharmaceutical industry and I worked in hospital. So really for us it’s a little bit ingrained. So we, we just did it and when, and you know, when they got their driving license, they just did it. So

Tom: it Wasn’t even a decision really. It was just something that was going to happen.

Alison: You just through that, that’s what we would, we would do. And if anything ever happened, that’s what we would do. I mean, I get a little bit cheesed off because we can’t give blood because of our inherited blood disorder. We can’t give blood and it, so we’re that sort of family anyway.

Paul: Yeah. And, and as Ali touched on, I mean the fact that, that Anna had saved Tom’s life basically made, just reinforced the fact that, you know, we’ve got living proof of the importance, the value that whatever word you want to use of, of transplantation. So why would we not do it?

The other option is that you discuss it with your family and that could be a verbal decision. Again, you can stipulate if there’s any preferences on what you would or wouldn’t wanna donate.

Or the third option is you can nominate a representative. So if you want someone to make decisions on your behalf, should you be in a position to donate, then we can check the organ donor register and see if you’ve nominated somebody to make those decisions for you or failing that.

If you don’t make a decision, then we will assume that you have no objection to donation, that you would fit in with the majority of the population who do support organ donation and we could deem that you would be a donor.

I would say it is one of the most important conversations that you’ll ever have talking about your decision about organ donation.

It’s an incredibly difficult conversation to think about, and I always say this is to think about because I think you’ll actually find when you have that conversation, it comes very natural.

It’s difficult to think about what will happen when we die. It’s not a thought that is readily available in our minds, and often people will push it to the back and hope that it never happens as we all do. We all hope that will never happen.

But the reality is that we will all die at at some point. And it’s so important to tell your family your wishes about your end of life care choices.

When we speak to families, they’re in the depths of grief that it’s usually a very traumatic event that has led them to be in the intensive care or the a&e department and meeting with ourselves.

And so if they’ve had that conversation with you about what you would like to do regarding organ donation and your end of life care wishes, it makes it so much easier because it’s something that they can pull from their past memories and it’s something that they feel comfortable that it’s what you wanted to do. We like to think that the conversation isn’t about death and dying.

It’s more a conversation about potentially saving the lives of many other people.

That conversation that might seem very daunting and scary to have, when you think about the side of it, about saving people’s lives and the transplantations that may come from this, it’s an incredible, uplifting conversation.

Talking about your legacy as a person is incredibly important and it’s a conversation.

So it’s our main job is to care for you and make sure that your decision is upheld at the end of your life. And we also provide support and care to families at their most vulnerable to support your decision.

Families can find that the process really overwhelming, exhausting, confusing, and this is why it’s always so important to share your decision with them in life. So it makes it easier for them to support your decision at this important time.

It’s not very normal for people to talk about death. It’s not a very normal to talk about organ donation and we know that organ donation is an incredibly rare thing. Not a lot of people are actually able to do it.

So rather than focusing on the end of your life and the grief that they’re experiencing, we have conversations with them, which really focuses on, being able to save the lives of others, trying to, to highlight the legacy that  you are leaving when you donate your organs.

And really trying to support families in supporting this, this positive move, this positive decision that you’ve made to change your story. And, and the stories of others, saving lives through the gift of organ donation.

So, yeah, me and my sister, like I said, we’re both on the organ donation list and we I more than happy for if I can, when that time comes, and my sister’s the same, if we can donate something great, um, we agree with it, we’re happy to do it.

But yeah I think for me, dad, it’s not, I think because where we go back to where everything was so quick and sudden and, you know, you do kind of have that, everything’s gonna be all right, she’ll pull through.

You do have that in the back of your mind and you’re like, right, come on. You know, but keep that positive and, and stuff. So, I’d say that side of it, you know, we still had that, she’ll pull through, she’ll come home.

And then I think with the being just so quick, you know what I mean? Just like I think more for me dad was, I think because it was maybe on the day that conversation with the donor team happened, you know, it was very, obviously very raw at that point.

So yeah, I think that’s what I think why my dad was probably against it and yeah. Well, I’m not sure. I think people talk about, to talk about it more, maybe an advertisement campaign or something, or just to get it on them tellies and get people watching it, and then that might spur on conversations and maybe letters through the post or it’s a tough one to try and to, to give, you know, to, I think a lot of the time, a lot of people have conversations upon a death or something like this, isn’t it really?

I think, ’cause like I said before, you know you kind of go, oh yeah, well, I’ll sign up to donate. And then once you’ve done that, that’s it.

It’s kinda like, put, put the back of your head and, and that’s it. And like you said, you know, it’s still kind of, not, not a lot of people talk about it. And like I said, why not?Why, why it, it kind of only happens upon someone passing, unfortunately.

So as well as registering a decision on the organ donor register, it is really important in my experience to speak to your family about organ donation.

Sometimes families are surprised that their relative has signed up to the organ donor register because it’s not something that’s discussed, and although they’re still willing to support that, in my experience, the best quality conversations are when someone has signed up for the organ donor register and also had a conversation with their family at some point, or their loved ones at some point, that this is what they want to do after they die.

These provide families with a lot more comfort in knowing that they’ve made the right choice for that.

I think people that have agreed for their own organs and people that have agreed for their loved ones organs to be donated, maybe they should be encouraged to talk to other people as well.

Maybe they could be given some little handouts, you know, if they’re in that right frame of mind, give these to your family. This is what your loved ones have been able to do and it’s such a good thing. And, you know, maybe they could do that. Obviously they’re not reaching a great number of people, but still every look at bit counts.

I know there are, you know, posters up in the health centre and things, but my health centre has a newsletter and they asked me if they could feature Susan in the newsletter. So I sent them some of the photographs from the St. John’s thing and they did a little article about Susan in there and that she’d given her her body parts. So, you know, if everybody could do something like that, every, I mean, I know the little GP’s where there’s only one or two doctors probably don’t have newsletters and things, but there are a lot of health centres.

Ours is a big one, and they all knew Susan well, they were very upset.

My own GP said to me later, she said, I was gonna ring you he says, ‘and I thought, no, I’ll cry. And I’ll make her cry.’ So he said, ‘I didn’t ring.’

I said ‘oh, you should have rung. Would’ve been alright, we’d have had a sob together.’

You know, I said, it’s okay. So they did know it. Whether they feature everybody in the newsletter that donates, maybe they should, but then people will get used to seeing the column and thinking, ‘oh yeah, it’s just donation thing. We don’t do that.’

You know, so maybe a story every, and, and again, you know, to peak their interest with a photograph because it’s local, so they think, well, do we know these people?

You know, so they, they’ll look and see. But yeah, what else you could do?

I am just not sure. I’m just not sure. It’s communication.

The whole thing is communication.

You know, but maybe go back to doing, um, TV advertisements now that, you know, COVID is done with, and things are clearer, whichever way they choose to do it.

Whether they go back to it not being a legal thing, you know, that it is just a gift or whether they stick with what they’ve got.

I don’t know. I suppose it’s a case of just trialing seeing, which seems to have some impression.

But I’m doing my best. I keep telling everybody, all my guys at the shoot, you know, you have to sign the register.

You are going to do it, aren’t you? ‘Yeah. Yeah, yeah. Yes, Carol’ Good. You know, I’m sat at work now, I run a team of interviewers and they’ve all been told, all my managers that I work with, they’ve all been told.

So, yeah. You know, I mean, we have a good laugh about it, but all you can do is tell people and let ’em know what’s involved.

And I maybe suppose that’s what we’ve just been doing, you know, with a name to showing them exactly what is involved.

Yeah, looking back, I think, I really think that, that it’s worth definitely having a conversation with, with somebody and saying, you know, if something does happen and I’m able to donate my organs, this is, you know, this is kind of, this is what I want to happen.

And for you both to have that discussion, I mean, obviously there’s all different sorts of scenarios, isn’t there, that people in relationships, but for you to have that discussion say, and you know, this is, this is what I want, and for your next of kin to be aware of that, then that, that would make that process to me a lot, a lot easier to get your head around.

Paul: I think, and it is, it is the extended family as well, Leah, the, you know, because the individual can sign up and say, yes, I’m happy to donate my liver.

By the time that situation comes, they’re out of it. Yeah. You know, so it is the support of the extended family and what, whatever the internal family conversations have been, but they need to understand how passionate or how keen the individual was on doing that and to support that, because that’s where it falls down as, as you said right at the start, that families, you know, oh, she may have wanted to do it, but you know, we don’t want to lose any of her.

So it’s not an easy, not an easy problem to solve because it will be different for each family as well. There isn’t a one size fits all, I presume consent can also be taken as, oh, you are making our decision for us.

You know, even though it’s a way of trying to ease, you know, and get more organs.

If, if people feel they’re been dictated to, then their natural reaction is, well, no, no, it’s not up to you to decide.
It’s up to us. And because you’ve decided yes, we’ll decide. No. So there is that sort of thing that goes on.

Now the law can help in, in many ways, it takes that burden of decision making away from families when, as I said, you know, you’re going through a really difficult time that day and we’re having these really difficult conversations that the law can take away that decision making for you.

Obviously, we want you to feel comfortable and be supported and there will be a specialist nurse with you to guide you and support you the whole way through the process.

But when you don’t have to make that decision often that, that gives reassurance to families that it’s not their decision, that decision can be taken from them.

The new legislation helps families and specialist nurses by removing the burden of decision making.

Families are often grieving and in shock when we meet them. So what the new law does it, it moves the default position for all people now living in the uk.

They’re considered willing to want to help save the lives of other people, and that’s how the law helps.

The deemed consent has been incredibly helpful in my role as a specialist nurse.

Sometimes the word ‘law’ can seem a little bit scary and very confusing. I’ve seen the law help many families. It’s there to aid us as a tool and also as a population that we all feel if we do feel comfortable in saving people’s lives after we die.

The tool is incredibly helpful for those families who maybe haven’t had this discussion and feel unsure about what their loved one would’ve done.

What I found most helpful about the law is that it’s a tangible fact that exists, that we can speak about, that people have an awareness that actually the law did change.

It opens up the room for conversation. It allows us to talk about how we can help you and your family in that, in the depths of grief, in their en environment of the intensive care unit, but also allows them to speak to me as a specialist nurse to tell me their wishes. Your wishes, and what you would’ve wanted.

Hi, I am Tim. I’m a specialist nurse in organ donation.

Organ donation in the UK is now an opt-out system. So all adults are presumed to consent to organ donation in the UK unless they register a decision not to donate.

So there are multiple ways you can register your decision. The most helpful for us is to, um, is to, to document your decision on the organ donor register. It’s also possible to notify us via your GP, via the DVLA when you apply for or you renew your driving license, via the passport office, when you apply for or renew your passport.

The register records your your decision to whether or not you wish to donate your organs after you die. It’s also then something that allows us to share that decision with your family. Families tell us when we have a conversation with them, if you are unfortunately at the end of your life in the intensive care unit, families say that having this information available to themreally helps reassure them as they can be really overwhelmed at this early stage of their bereavement.

And during this crisis, we are able to show them your organ donor registration.

And this is something that can also help them have conversations with the rest of their families as well.

To let them know that you want to do this amazing thing, and it’s a really amazing and emotional thing for all of us.

So in my experience as an organ donation nurse, I’ve seen the law really help some families that are a little bit confused about what to do at that time. And the fact that someone has not opted out means that we assume that they would want to donate their organs and help other people.

And I have seen the law really help these families to come to that decision, because if they’ve not made a decision to opt out, then we can assume they do want to help other people.

And I think just on a sort of character basis for all of us, all of us would want to help someone if we could.

And what better way to help someone than by giving them your organs after you don’t need them anymore.