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Organ donation

Contacting the donor family

Recipients who’d received an organ from a deceased (cadaveric) donor often wrote to the donor family via the specialist nurse (transplant co-ordinator). All contact between recipients and donor families takes place via the specialist nurses assigned to each family and recipient.
 

A specialist nurse explains the UK guidelines on what information nurses can give about...

A specialist nurse explains the UK guidelines on what information nurses can give about...

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We have quite clear guidelines as to what information that we give to families and, as I’ve said, we can offer them some follow up either by telephone or by letter. And the guidelines that we will give them some information, we will tell them the age of the patient approximately, we will tell them whether it’s a man or a woman, a child or an adult. We will also be able to tell them the length of time they’ve been on the waiting list and perhaps the length of time they’ve been on the dialysis treatment if its, for example, a kidney recipient. And we’ll be able to tell them what their condition report is, post transplant operation.

 
There are times when perhaps that recipient feels able to write and say thank you for the gift of life that they’ve been given, and they will then pass that letter onto their own specialist transplant nurse. They will then send that to our offices where the specialist nurses for organ donation work, and then we’ll forward it on.
 
We will forward on this information but just protecting the anonymity of both sides until a time they are both comfortable to share a little bit more information.
 
At times, those letters can go back and forth maybe as many as ten years really. 
 
It is very rare for donor families and recipients to meet up.
 
If both donor families and the recipients would like to meet up, both will be supported by their own specialist and we do that through very much an agreed time and a safe environment for them.
 
So the nurses will probably be present when they decide to meet up?
 
I would feel that certainly one of the specialists would be there and, from my experiences, donor families do need a lot of support at that time, so I can’t imagine that we wouldn’t be there to support them through that.
 
Yeah. And you mentioned that, either by letter or by phone, you tell the donor families about the recipients age, whether it was male or female, that kind of information. Do you update them at any point later?
 
We will phone the donor family immediately post donation, if that’s what they would like and just tell them that yes their relative has been able to donate and which organs perhaps they have donated. We always follow that up with a written letter so that they actually remember the details and they’ve got something so that they can read over it. So we will write to them and the guidelines is within two weeks of the donation happening.
 
It may be that we then, every year, we will offer them the option of whether they would like updated information. We know from some families they don’t want that, so we ascertain that, but they always have our contact details. But I would say a lot of families either on the anniversary of the death or perhaps a birthday or another special day, that some of them will contact us and we will give them again that same basic information and an update.
 
So those are the guidelines, they don’t vary from hospital to hospital? Or can they vary?
 
The guidelines that the specialist nurses for organ donation follow are national guidelines, so that basic information is the same for all donor families. While some of the specialist nurses for transplantation, so the recipient co-ordinators, they will be employed by their own hospitals, so they will have their own hospital guidelines. But they are very much along the same lines of keeping information to a minimum and anonymous information.
 
Once we write to the families at the two week duration, we will then tell them that we wi
Some of the recipients we interviewed had written to the donor family shortly after the transplant to thank them and tell them a bit about what the transplant had meant to them. Many of those we spoke to said they’d never heard back from the donor family but often thought about them and the donor. They said they would always be grateful for the gift they’d been given and remember the loss and trauma the donor family had experienced. On the day of the transplant, many said they thought about their donor and donor family and commemorated the day in some way.
 

Holly spoke to the specialist nurse and then wrote to the donor family. It was the hardest letter...

Holly spoke to the specialist nurse and then wrote to the donor family. It was the hardest letter...

Age at interview: 23
Sex: Female
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I have seen my transplant co-ordinator [specialist nurse] once since my transplant. No twice sorry. She came in to see me a couple of days after my transplant to make sure that everything was going well. And then I saw her when I spoke to her about writing to my donor family.

They obviously say that you can know details about, strict details about your donor. And then the option is there for you to write to them if you want to write to them. So I was told the age of my donor, the sex of my donor, and that was it.

And I decided that I would to write to the family and obviously express my thanks. I mean ‘thanks’ is a small word that really doesn’t come across as meaning much. But yes it was the hardest letter that I’ve ever had to write. And to write down in words how thankful and how grateful I am for what their family member did for me was really, really hard.

Yeah. And you then wrote that letter

Yeah.

Gave it to the transplant co-ordinator.

Yeah. I wrote the letter to my donor family and there’s obviously strict guidelines on what you were allowed to put in a letter. I just signed it from [name].  And I gave it to the transplant co-ordinator and then they post it on. They check it. They obviously have to read it and make sure it’s suitable, and then they post it on. And then it’s up to the donor family if they write back to you.

Yeah. And did you hear from them or?

I didn’t. I didn’t hear back in letter form. But the transplant co-ordinator rang me and said that the family had received the letter and that the family had rang the hospital and said how pleased they were to receive the letter. So I didn’t actually get a written letter back but I know that the family did receive it, and that they were pleased with the letter, which is nice to know.
 

 

Justine felt strong enough to write to the donor family two years after transplant. She wanted to...

Justine felt strong enough to write to the donor family two years after transplant. She wanted to...

Age at interview: 37
Sex: Female
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After everything I’d gone through I wanted to get in contact with the system. You don’t know if they’ve [donor family] received your letter, if, but you know, what they’re feeling, thinking if they have. And I waited about two years until mentally I was in the right place that I could actually say everything that happened to me, all the wonderful things that I’d done two years after.

I was able to write to them, and I only hope that they did receive the letter and they will look and think, as awful it was to lose their loved one, something amazing has happened. Something has gone to save someone else.

I would like to hear back from my donor family. I don’t know if that will ever happen, but if I have peace knowing that they’re happy, then I guess I will find happiness through that too.

Yeah. And some people said that they wanted to know more about the donor. How old was the person and all that kind of information. Was that something that was important to you, or not really?

Yes. I knew how old the man was. I knew that he was 42 and that’s all I’ve been told. If I’m honest, sometimes I wish I would hear back from my donor family to help me with my healing, as I’ve said, but it may not happen. But that’s how it is.

So I could learn more about this person to see what an amazing person it was that gave me this opportunity. I think what donor families go through must be so traumatic but if they can see the goodness of a story like mine and others, how well we do afterwards. And lets hope that they get that same feeling of like, “Wow,” and for me if I heard back, it would also make me feel “Wow.” But then I have to accept that it may not happen.
 

Some of the people we interviewed said they’d been given very little information about their donor but would have loved to have known more. Malcolm (Interview 22) said that he’d had his second kidney transplant over twenty years ago. He was given no information about the donor but would have liked to have thanked the donor family and to have met them. Diana said she’d asked about her donor soon after coming round from surgery. She’d written to the family twice but had never received a reply.
 

Helen was given no information about her donor. She would love to know if the donor was male or...

Helen was given no information about her donor. She would love to know if the donor was male or...

Age at interview: 39
Sex: Female
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I was a little bit upset that I couldn’t get any information about the donor. This annoyed me because in different centres around the country, different people are given different information. Now I didn’t want their life story, but I wrote a letter to the family after the op, and it was really difficult to write it because I didn’t know whether that person was a man, woman, age, nothing. So it was very difficult to write that letter.

It seemed very impersonal just saying your family member or whatever. I couldn’t make it any more distinctive than that. And that was upsetting. But that is down to the [hospital name]. That’s their policy on it. But I kind of think, if I was donating, I’d like the person to know a little bit about me. I know it can cause lots of problems because you can get families who are following the recipient and making sure they don’t do anything to harm the organs. I know that.

But it would have been just helpful to have known a little bit of information about that person so I could have built up an idea of him or her in my head. I have no idea about the person at all, and that upsets me sometimes because I’ve got to live with their organs inside me for the rest of my life. And I know nothing about them. So that’s a bit of a sore point with me. I would have liked to have known a bit of information.

I think to the day I die I’ll be thinking, “Who was she? Who was he? Was he or she married, have they got children?” You know, just little questions like that. And I don’t see the harm in giving a little information. Because at the end of the day, as I said, they have consented to do this after their death. And also the recipient has put themselves through a huge operation in order to get those organs, so it’s a very big deal on both parts.
 

 

Diana thought about her donor and donor family a lot. She wrote to the family a year after the...

Diana thought about her donor and donor family a lot. She wrote to the family a year after the...

Age at interview: 54
Sex: Female
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I asked about my donor immediately after the operation. I wasn’t told very much. But then I asked a couple of weeks later just before I went home. And I was told she was a 31 year old woman who died of a brain haemorrhage. And I never quite knew what to do with this information for quite a long time. I thought about her a lot. And I remember when I was going through a very difficult time after the operation and feeling so low, I got a real sense, I felt quite guilty because she’d died and I was alive. It was like it was the wrong way round.

But I couldn’t, I had to do well, I felt a real duty, I had to do well for her family. I had to keep going for her family. And I thought about them a lot. I wondered who they were and what they were going through. And wondered whether she had children or whether she, well who she was really. I was very curious to know.

And I regularly, if I went anywhere near, I’m not particularly religious, but if I went anywhere near a church, I’d always light a candle for her. I was always thinking about her, and thinking about the family. And thinking well it’s six months for me, and what are they thinking about, and how are they doing. And then it’s a year for me, and when a year came I wrote to the family and said thank you.

And I said I’m doing really well, and this is what I’m doing, and it’s amazing. I want to look after my new heart and lungs and do my best and just, oh, I was incredibly grateful for them for what they’d done.

And then I wrote again at five years as well. I didn’t get a reply from them. I’m going to write again because I’m going to specifically ask if they feel able to give me more information at this stage. I’ve got a little bit more information, but all I know is that she did have a brother and sister, who were there at the time of her death as well. I’d like a bit more. I’d like to know who she was and what she was like, and what she did for a living. And whether she had children or not.

I’d just like to make contact with the family if possible. But I quite respect if they don’t want to because it’s a very painful thing. But I do think about them a lot, and I think about her a lot, with a real sense of gratitude.
 

 

Linda wrote to the donor family but had no reply. She wondered if it was too painful for them. It...

Linda wrote to the donor family but had no reply. She wondered if it was too painful for them. It...

Age at interview: 51
Sex: Female
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I never got a reply back which is, that’s their decision. It’s got to be their decision. It maybe too painful for them. I wrote and told them that I was doing well, and obviously what age I was and I had gone back to college. And I had one grandchild at the time, and you know, what it’s meant for me.

And that might just be enough for them to know that somebody’s life was brought back. And I’m reckoning if they had a son of 22, they could be anything from 40 plus, so there’s a chance they could be grandparents themselves. You know, just to know that somebody else has had the benefit of that must mean a lot, otherwise they wouldn’t have done it.
 

Sue had had two liver transplants, in 1995 and 2006. She wrote to both donor families and sends them cards every Christmas. She heard back from one of the families.
 

Sue heard from her first donor family. Her donor had supported Liverpool Football Club and the...

Sue heard from her first donor family. Her donor had supported Liverpool Football Club and the...

Age at interview: 45
Sex: Female
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On my first liver transplant, I had a letter from the people who donated the liver. It was a man. He was 42-years-old out walking his dog, and he died of a brain tumour. He was a Liverpool supporter and he was a season ticket holder. So they wrote me a letter to say could I carry on supporting Liverpool in his memory.

Somehow, it got to Liverpool Football Club, and I was in a magazine that they give, a programmes magazine saying that I would carry on supporting Liverpool for the rest of my life because I had this man’s liver and he was a season ticket holder.

So I did carry on supporting Liverpool right up to my second liver transplant. And I wrote back letters to the first liver person. I still do now every Christmas because, if it weren’t for them, I wouldn’t be here today. Because they were, I was 29 when I had my first liver.

My second liver, I wrote to the lady, or the family of the lady. She died in a RTA [road traffic accident]. So she was killed right out. So I’m thankful to having her liver. I do write to them but I haven’t heard a reply yet. But I know they get the letters because [hospital name] always tell me they do. So now, every Christmas, I write to two families because if it weren’t for them both, I wouldn’t be here today.
 

Chris said he wished he’d written to the donor family. Although the kidney he received rejected after about ten days, the gift had still been just as important.
 

Although the kidney rejected, Chris and his family were still given a gift and an opportunity. He...

Although the kidney rejected, Chris and his family were still given a gift and an opportunity. He...

Age at interview: 52
Sex: Male
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I would like to say that my life has been saved in a way. And it’s difficult because I wouldn’t know how that would be received. And I would hope it would be received gratefully and that, you know, that I’d just like them to know that there’s a wife and two kids and me, a brother, and everything that has carried on through the tragedy that has happened to somebody else. And that hopefully I would like to think that some of the edges had been taken off that tragedy, that it wasn’t an end, that you know I carry on.

I think it’s irrelevant that it failed for me. I would always be grateful that I had that opportunity. And that, in a sense, it hasn’t failed, that to donate is the main thing and whether it failed or not is irrelevant.
 

Experiences of donor families gives more detail on contact with recipients.

Last reviewed May 2016.
 
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