She [specialist nurse] came to visit us and she brought us a letter one day, a letter of thanks from the laboratories where the organs had been sent to. She told us about the man that received the liver. But, as I say, we’ve never heard any more from him. So hopefully he’s fit and well.

Is it something that you would like or you’re quite happy,

I would love to hear. It isn’t a case of thinking part of my son lives on in somebody else. I don’t think that. I think that has never come in to my way of thinking at all. it’s just I would be so interested to know if he is fit and well and what a difference it’s made to him having some life. I don’t know if he had children. I know he was married and he was 38 and he’d been given 3 days to live. He went home from hospital within a week, so it must have taken okay. Does he ever think on the day, This is the day I was given life Has he gone on to have children?

I found afterwards, I spent a long time looking to see how people were before they needed organs and then how their lives had changed afterwards. I felt I needed to know that. I felt I needed to know that to reinforce our belief that it really could make a difference. And so I did spend quite a lot of time doing that and I presume that’s what a lot of people would do. I don’t know that but that’s what I felt I needed to do.

The one thing that I have done is become a Reiki Practitioner. I got interested in holistic therapy and healing. And I find that has helped me a lot because the principles of it are Just for today, don’t worry And don’t use all your energy on something that can’t be changed. Use it in a positive way I find that’s helped me a lot because there is nothing I could do, there is absolutely nothing that I could do that would give me another five minutes with my son. I know that, and I have to accept that. You have to have acceptance of that and move on.

The people who dwell on it and get bitter and torn apart by it, I feel really sorry for them because until you get to the point, when you can let it go and accept it and you let it go, you’re living on another planet. You don’t know where you are, you’re totally in limbo and it’s a horrible place to be.

But when you get acceptance, then you can move on. I’m not a religious person. I haven’t got any particular faiths or anything. I treat other people as I’d like them to treat me. I try to be kind and fair and honest and all those sorts of things. But I don’t feel the need to go to church to do it.

We had our son buried so we go to the cemetery and have a little word whenever we need to. And I find that works for us really.

I said the only thing I wanted was to leave the ward before they took him away. They said that’s fine, but you’ll have only a matter of a few minutes in order to do that. So you have to decide before really, when you make the decision, and it’s the hardest thing in the world to do. I wouldn’t wish it on anybody. it’s very, very traumatic. it’s a horrible experience. But we felt that this was the only way that some good would come out of a terrible situation.

So then the life support was switched off. We had this preconception that there’s a little switch somewhere and you turn it off, and then they’re gone. Well it isn’t quite like that. There are lots of different switches and they all get turned off in due course. Then you wait and, again, that can be a matter of minutes or longer. That is terrible because you’re sitting there waiting for your child to die, which is too much for anybody really.

When the time came, we kissed him goodbye and left the hospital. And then did the hardest thing in the world, we had to go out and just leave him there. But we did it.

We felt that that was the wonderful thing to be able to say, that our son with his learning difficulties, he couldn’t talk, he couldn’t do lots of things, but he did something wonderful. He gave life to someone else.

We’ve never heard from the gentleman but we hope he’s fit and well. We donated all of Mike’s organs and his corneas. Unfortunately because of his condition they weren’t able to be transplanted directly but we agreed for them to go for research. So, in the long run, they may help lots more people.

Twice a year I go to my local A&E department and speak to the staff there and explain that, although they may feel that they’re being kind by not asking the question, because the families are so upset and it’s such a terrible time, in actual fact it’s cruel not to ask or give them the opportunity of having something positive come out of a terrible situation.

They seemed very surprised at that. But when it was told to them, it seemed obvious and now the levels of families that have been asked has gone up. So it’s virtually a hundred percent of families are given the opportunity to donate.

I don’t say that everybody should do this. But if they’re not asked, then everything stops there for the donor family. They’ve got nothing positive, there’s just nothing. it’s an end and there’s nothing. For all the people who are waiting, there’s nothing. So not only could one person die, lots of people could die because they’re waiting on the list. So, by not asking, they could actually cause lots of people to die. And seeing as their job is based around trying to help people to live and to be well, it seems a strange thing to give a death sentence to ten people by not asking the question.

I explained that they couldn’t possibly make you feel any worse because you couldn’t feel any worse. And, as for the time scale, you completely lose track of the time. You don’t know if it’s a day or an hour or a minute, or whatever. You lose track of all that. So there’s no reason not to not ask the question because someone is upset. Give everybody the opportunity. That’s what I would advise anybody to do.

As a family, we’d never really discussed organ donation. But I made the decision myself that I would donate my son’s organs. Then I said to my husband, Well, you know, we’re going to have to decide, when they ask us about donating the organs

They didn’t ask, so we were sitting there and sitting there and eventually a consultant came along and he was telling us that we would have to turn off the life support. And it isn’t a case of if, but when. And that actually the decision is his, not ours to make. We thought it was our decision. But it’s actually their decision. And we were told that if we didn’t do that, we wouldn’t be prolonging his life, we’d be prolonging his death.

So you can imagine that all your emotions are in turmoil and you’re feeling as though you’re on another planet. And then I said to the consultant, Well what about donating organs And he looked at me as if to say, Well what on earth do I do now He seemed surprised and whether it’s because our son had learning difficulties or whatever, I think that was the main reason that nobody approached us. But, because we asked the question, they started putting the wheels in motion.

No one broached the subject with us. As I said, I think it was mainly because our son had learning difficulties that they just assumed somehow, for some reason, we wouldn’t donate organs. But apparently it’s very rare for people to be asked. Staff just don’t know how to do it. They don’t know how to approach it. And if they don’t ask, the chance is gone.

You can’t go back the next day and say Oh you know, we thought about donating the organs it’s something that has to be done then. So I feel very strongly that it would be a good thing if all A&E staff had meetings such as we have, so that they can get to understand what it’s like. It must be very difficult for them, I appreciate that.

And you said that you mentioned it to the consultant yourself?

Yes.

And he was a bit taken aback?

He looked very surprised. He looked as if to say, Oh xxxx!, I’m going to have to do something about this now And he looked a bit flummoxed and then said, Okay, well I’ll go and see what I can do Really it should all have been set up. I feel they should have had a system in place for this because it must happen all the time. But they obviously didn’t.

How long ago was this?

It was in 2006.

After a while, the transplant co-ordinator came to see us and she had a long talk with us. That was one of the worst parts of the whole experience because we’d already made the decision to donate the organs. Really I would have preferred to just be able to sign a form saying we have agreed to this, and we understand we could have been told all the details but we don’t wish to know all the details. We just agree to it.

But, instead of that, we had to sit through her telling us very kindly, very nicely, as compassionate as she could possibly be, but she still had to tell us in detail how and when everything would be done. Which is a hard thing to listen to.

You mentioned that ideally those forms could be much shorter and simpler?

Well, I think there should be two sets of forms. There could be a form that sets out everything and, if you wish, you can go through everything like that. But for us, we had made the decision. We would have been happy to sign a disclaimer to say we understand we are signing this. We have not read the full details of the operations involved because we don’t wish to know those details. We give our consent in trusting that due care and consideration will be taken. Something along those lines.

Obviously, you want your loved one to be treated with respect and everything to be done above board. But you don’t actually need to know how they were going to do everything. I don’t feel that you need to know that. But, with the law as it stands, you have to be told everything. I think there could be two forms. Some people would need or want to know everything, and others like us would prefer just to sign and say, Yes, okay. We agree to it And that would be an end to it.

I made the decision, I said yes. I spoke to other family members and they all said, If that’s what you want to do, we’ll go with that Nobody had said, No we don’t want to for any reason. We all felt that that was the right thing to do.

In some ways, for me, having our son as he was, I’d had to make decisions for him most of his life anyway. So that was something that came natural to me. But I feel very strongly if someone had said your son could have an organ transplant and he would live, I would have taken it with open arms. And I think, if you’re prepared to take it, then you’ve got to be prepared to give it as well. I’d hate to think that I was the cause of somebody not living because I was too selfish or upset not to go with that.

it’s probably an unusual situation that a parent decides for a child, or especially a man, usually people would make their own decisions on that. But I always tried to do the best for my son as I saw fit and I thought that was something that would bring a real meaning for him. He couldn’t do many things but he could do that and that’s something better than most people do I think.