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Organ donation

Support and where to find help

Donor families we talked to received support from various sources, formal and informal, including family, friends, neighbours, colleagues, support groups, bereavement counselling and their religion or spirituality. Some gained support by reading about the experiences of other donor families on the internet, saying it had helped to know they were not alone and that their feelings were normal.
 

Eunice was supported by some very good friends and her daughter’s manager from work, who became a...

Eunice was supported by some very good friends and her daughter’s manager from work, who became a...

Age at interview: 55
Sex: Female
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I think we were lucky in the point of fact that we had some very good friends with us at the hospital who came to [place name]. And then for the five days that Kirstie was in between the two hospitals, there was certain people that visited every day, that spent the time with us, and have been our support.

We made friends, there was Kirstie’s General Manager at work. I’d met him a couple of times. He came to the hospital every day. Now he’s one of our closest friends. We’ve said that if we didn’t get anything else out of Kirstie dying we got a close knit friendship of people who we meet up twice a year, we meet up or perhaps three times a year in actual fact.

We meet up on Kirstie’s birthday every year, we have a meal. We meet up on the anniversary of her, or the first Sunday after her anniversary of dying, and also her funeral was 28th December. And Kirstie worked for a large restaurant chain and, every year on the 28th December, that restaurant chain pay for us to have a gathering of Kirstie’s friends that she worked with, which is lovely.

And those people turn up every year. And there’s about twenty one of us I think go out to dinner and we all have Kirstie in common, which is lovely. So because we have that group of friends I suppose we haven’t looked elsewhere for support. We’ve supported each other.
 

Many people gained comfort from people visiting them and from hearing stories about their relative.
 

Craig and Sandra discovered how many friends Rachel had had and heard stories about her which...

Craig and Sandra discovered how many friends Rachel had had and heard stories about her which...

Age at interview: 44
Sex: Male
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Sandra' We had,

Craig' Oh yeah.

Sandra' amazing family support, and neighbours absolutely, we were blessed with the support that we had. And they, I mean they

Craig' I think we had over two hundred and odd cards, that I think the postman was,

Sandra' wasn’t it three hundred?

Craig' All I knew that table at the back, you couldn’t get another thing on it with flowers and cards. And the cards were all over. We just didn’t have enough room for it. People were so, so touched and just showing us kind….

Sandra' And it was the people that Rachel knew that we never knew, there was people coming to the door and we hadn’t a clue who they were. You know, that Rachel would stop on her way up from school and talk to this neighbour and that neighbour. And she knew that dog and this cat, and this child and that one, and she’d come up and tell you this lady in that street was having a baby.

The school were fantastic,

Craig' the school and,

Sandra' everyone’s, I mean the neighbours were all in and, as I say,

Craig' And a lot of people think that, they come in and I know from when my dad died, there were people come in and you’re thinking, “I just wish they’d go.” But people didn’t overstay their welcome, nobody did, did they? They were in, I think a lot of people, when it’s a child that’s gone, they’re absolutely stunned. They want to go in, say what they’ve got to, and then go, which is the right thing. It’s just to show a wee bit of support and, “We’re here for you if you want to talk, great.” And leave.

Sandra' And some come in with stories that we’d never heard,

Craig' The stories were good you know.

Sandra' Yeah, and different things about her. And the charity work that’s been done in her name as well since she’s died been absolutely amazing. From the school and the local community. From the shops,

Craig' And they’ve been really good.
 

One woman said that, a year after her son’s death, she was given some Reiki healing. She was impressed by its philosophy - of living in a positive way and in the present moment, rather than using energy on something that can’t be changed. It helped her so much that she decided to become a practitioner. Others said they gained support from their religion or spirituality.
 

Deciding to see a psychic medium is a very personal choice. Linda struggled with the idea of...

Deciding to see a psychic medium is a very personal choice. Linda struggled with the idea of...

Age at interview: 48
Sex: Female
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I do go and see a medium and I know that that type of thing isn’t for everybody. It’s a very, it’s very personal for all of us on whether or not we would enter into something like that now.

But I used to go and see mediums, oh for years and years, not particularly regularly and John [husband] didn’t believe in any of that. So he said that I used to tell, I would tell the person that I was sat in front of, and not even realised I’d told them things about me.

And I said, “Well it doesn’t work like that John, you just, you know you listen and you might say yes or no, and then that would be it.” And I really struggled with whether or not I would go and see a medium once I’d lost John because he didn’t believe in anything like that.

I was scared I think that if I went to see somebody, it’s the same lady incidentally that that I go and see, but if I did go and see someone, what if they didn’t tell me anything. And that would be terrible and then, but would I, but on the other side of that would I so want there to be something said to me, would it be, a bad thing to go and do in the first place.

So it was a very sort of, should I / shouldn’t I? And then a little while before it was the first anniversary, I decided that if I phoned her, because you have to wait quite a long time to see this particular lady, that if I phoned her and I could go and see her, then it was right. And if I didn’t, if I couldn’t see her, it wasn’t right to go.

And lo and behold she squeezed me in. And so I thought, well I reckon that’s the right thing to do. And I did go. I went to see her and I didn’t tell her why I’d wanted to see her, and she did the Tarot cards, as she normally does. And she couldn’t read mine. I’ve never ever witnessed her not being able to read the cards at all. And in the end she had to say to me that she didn’t understand why I was there because something wasn’t right. And I then told her that I’d lost my husband. And she said, “Oh I didn’t realise you were here for a spiritual reading. You didn’t tell me.” I said, “I didn’t tell you anything. I just said I needed to see you.”

And from there she gave me some information which, for me, there’s no way she could have known. Very, very clear things were told to me, and that for me has been a great comfort. I’ve not gone back and seen her since. I will do. I will go back and see her again. But I think that that, what she was able to tell me, and there were about four or five very distinctive things that she told me that nobody else would’ve known. There’s no way she could’ve known. I certainly didn’t tell her. And that was a huge, huge comfort to me.
 

Some people we interviewed sought professional counselling, either through their GP, work or a support organisation to help them understand how they were feeling and coping.
 

Linda had five counselling sessions through her employer, which helped her understand some of her...

Linda had five counselling sessions through her employer, which helped her understand some of her...

Age at interview: 48
Sex: Female
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Through my work, I was able to have some counselling sessions.

Through your actual employer?

Through my work. Yeah, through my employer. Yeah, face to face sessions. I had five of those.

And I think that pretty much, the five were enough. They don’t solve, counselling doesn’t solve the problems, but I think it just gets you to understand why you might be reacting to certain things. I had a big thing about John’s death certificate. I’d got several copies, so one copy was the one that was going off in the post, and what have you.

And I sent it off to the insurance company, one of the insurance companies, and it was pristine and when it came back it was folded in half, had a staple mark in it. And I lost it, completely lost it.

And the counsellor said to me that she thinks that was because that’s my final document or, I can’t remember how she described it now, but it was that final piece of official paperwork, documentation whatever, that related to John. That obviously is very, very important to me, or to anybody in the same circumstances, but yeah I had quite an adverse reaction to the fact that it had come back, because it was disrespectful.

And throughout everything that I’ve had to deal with and people that I’ve dealt with, everybody has shown me absolute consideration, courtesy, understanding, support. You know, I have been extremely lucky from that point of view. But the counselling definitely just enables you, I think, to understand why you might be feeling a certain way. Why things, certain things will trigger you and other things don’t. So it was helpful.

I’ve got a tremendous organisation that I’m now joined to. It’s not to do with organ donation but it’s to do with being widowed and young, which is the WAY Foundation. And they have been a tremendous lifeline for me and for [my son], because we meet with widows with children. And there’s lots of events that go on, it’s nationwide.

But it is a tremendous organisation who are there to help and support and for you to just to know that you’re not alone. And that actually the feelings that you have aren’t strange, aren’t unusual. And the support mechanisms that’s there is absolutely second to none.
 

The organ donation specialist nurse often told families about the Donor Family Network (DFN), a charity that supports donor families. Most of those we spoke to found talking to someone who had been through something similar or attending DFN events very helpful. The events were an occasion to meet other donor families as well as recipients. When her son died, Sue wanted to talk to other people who had had a similar experience and joined the DFN and Compassionate Friends. She later became a DFN trustee and also started hosting a local group for bereaved parents.
 

Sue wanted to talk to people in a similar situation. The Donor Family Network and Compassionate...

Sue wanted to talk to people in a similar situation. The Donor Family Network and Compassionate...

Age at interview: 51
Sex: Female
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For me it was quite important that I actually got to know other people in a similar situation. I asked the co-ordinator [specialist nurse] if there was any sort of organisation that dealt with donor families. And she put me in touch with the Donor Family Network, who supported us in the initial months and years even, until we became a trustee.

I also very quickly got involved in an organisation for bereaved parents. Which in the same way helped because I found local bereaved parents who I actually still am very, very friendly with.


Yeah. You decided to do this very, very quickly?

I decided very quickly that I needed to have contact with people who were in a similar situation to myself. Whilst at the same time I also acknowledged very quickly that one day I wanted to actually use this experience in some sort of positive way. I just didn’t know how.

And it wasn’t until we became trustees of the Donor Family Network that I realised that’s what I needed to do. I needed to use my experience of a few years to hopefully help by talking to people who are very recently bereaved. Who were still at that raw stage and thinking, “I don’t know what to do. Am I going mad?”

Through the counselling I joined a local bereaved parents support group. And over a period of time, we lost the use of the facility, where we were holding it. So we now actually host it at my house. But it’s actually part of another organisation called the Compassionate Friends.

The Compassionate Friends is an organisation that supports bereaved parents and siblings and grandparents. And we actually have support groups all over the country that are run for bereaved parents. There is also a help line which is manned 365 days a year, and I man one shift a week on that. Where we talk to bereaved parents who obviously are not always organ donors, but sometimes are. And we can pass details to them of support groups in their area.
 

Most people we interviewed praised the support they received from support groups, though one man found them less helpful than he’d hoped when they didn’t send the leaflets he’d asked for on several occasions. Eunice said she would have liked to join a local support group for donor families but there were none in her area.
 
Some people we talked to said they would have liked more support in the early days but, at the time, they had not known where to turn. A few said that, although they did receive counselling, they would have liked it sooner because the first few months were so difficult.
 
One woman said she would have liked more support for her husband, who found it difficult to talk about their son’s death and became depressed. Others would have liked support for their children, including counselling, but it had not been available in their area.
 

Jackie’s husband bottled up his feelings and became depressed. She wishes he could have talked to...

Jackie’s husband bottled up his feelings and became depressed. She wishes he could have talked to...

Age at interview: 71
Sex: Female
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The trouble is that men, and I know, one shouldn’t be too categorical but men are supposed to be the strong ones. So they don’t let their emotions show, but they bottle it up. And they bottle it up and all he could say was, “I couldn’t teach him to cross the road.” And that would make my heartbreak absolutely, you know, yes. No, he was never the same. Never the same.

[Nurse’s name] mentioned counselling, I mean that was a dirty word. “We need to go to the doctor, you know, you’re obviously depressed.” But it’s very difficult. If only you can get the men to talk. If you can get man to man even, you know, find somebody else who’s been through a similar thing so that they can at least talk to each other. Because, as I say, they feel they’ve got to be the strong one and they’re not always. It is quite often the woman that has to carry on, you know, plan the meals, do the shopping, and that sort of thing.
 

Some people noted that, although people outside the family were empathetic, many did not know what to say. Several mentioned that people had crossed the road or avoided them because they were unsure what to say or how to react to them. A few people said that sometimes people were unintentionally insensitive with their comments and this was difficult because they were feeling very vulnerable at the time (see Coping with bereavement).
 
Where to find help  
 
Donor families we interviewed found different organisations helpful and several wished they’d been given a list of relevant charities when they left the hospital.
These support groups can be found in our 'Resources section'.

Last reviewed May 2016.
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