The donor family: Sue Burton

Sue Burton and I can't quite bring ourselves to confront the subject we have met to discuss at her neat house on the outskirts of Grantham, Lincolnshire. We talk instead about journalism - her son Chris has just started a job with Sky Sports. "It's a dream job. He's happy, that's all that matters," she says, her voice rising a little unnaturally.

I had forgotten Chris's name and she has to remind me ... "My other son's called Chris; he's 25." My other son, because we are here to talk about her younger boy, Martin, who died suddenly five years ago, almost to the day.

"The anniversary was only last week," she says, "which is why I didn't want to meet you then. It's a difficult time to try to be positive about it. I didn't think that was right for this sort of meeting." Because this meeting is about what those aiming to encourage more organ donors call the "gift of life", the possibility that some good can come out of the death of a 16-year-old.

I admire her courage, and the clear-sightedness and economy with which she describes Martin's death. At first, as she talks, her neck goes very red - clearly, this is a trial, but she keeps her emotions under control, talks about her grief and anger without anger. Tears well up briefly, but none fall. I am exhausted by this conversation; how must she feel? "It doesn't necessarily get easier," she says. "It's just a different way of dealing with it as time goes on."

Martin Burton died in late August 2003. He had just left school and was planning to go to the local college. He had everything to look forward to. It was the early hours of a Wednesday morning: Sue was asleep in her bedroom, Martin in his. Sue's husband, Nigel, who was in the RAF, was in the US on business and Chris was at his girlfriend's house. "I heard a bang like he'd fallen out of bed," recalls Sue, "and a minute or two later Martin staggered in to our bedroom with a sort of glazed expression on his face. I thought it was concussion. But then he collapsed on the floor in front of me, and I realised it was more serious."

He was taken to the local hospital, then on to the Queen's Medical Centre in Nottingham. "They told me that he'd had a bleed in his brain," says Sue. "They said he would go straight to theatre. He went in and out of theatre two or three times, but ultimately we were told the following breakfast time that the bleed had been too extensive and he was not going to make it."

Martin had had a brain haemorrhage due, the Burtons learned later, to a congenital condition of which they knew nothing. "It was one of those awful million-to-one things. It was a time bomb. It could have happened any time in his life or he could have lived to 80 without it happening, and we would never have known he had it."

Immediately after being told Martin would not recover, Sue was asked whether she would be willing to donate her son's organs. "It was literally, 'I'm really sorry, Martin isn't going to make it, there's nothing else we can do for him' ... take a breath ... 'Have you ever considered organ donation?'"

I find this shocking, but she says it's the way it has to be. "I honestly believe that if they hadn't asked me at that point, shock sets in and this whole selfishness of grief sets in, and if I'd been asked 12 hours later I might not have agreed because I don't think I would have been compos mentis. You have to make those decisions while you are still in that old life because a few seconds later, when the shock hits and reality hits, it's a completely different life."

Why did she agree to donate? "Even deep down then, though I couldn't perhaps have put it into words," she says, "I was thinking, if something positive can come out of this, that's what I want. Martin had no illness, he'd had no injuries, he'd always been a healthy boy, his organs were only 16 years old. To me it would have been sacrilege to have let those organs be cremated with him when there were so many people whose lives could be saved."

She agreed provisionally, pending the return of her husband from the US. It took him 24 hours, on three planes and in a fast car from Heathrow, to get back. Martin was kept on life support for 36 hours to preserve his organs. "People have said to me, 'Was it Martin's decision?' Well, Martin was 16. You should discuss it with your children but, for goodness sake, you don't expect it to be happening to your children, so we hadn't discussed it. But I knew, deep down, my thoughts, and Chris knew his. I truly believed that it would be Nigel's thoughts, and I believe it would have been Martin's wishes. Martin had for a long time wanted to nurse and I believe - and it's important for me to believe - that it would have been his wishes."

Sue shows me two photographs of Martin - broad-faced, gap-toothed, smiling. I ask her to tell me about him. "Martin was a boy with a capital B," she says, "noisy, boisterous, full of it. His teachers, whenever we used to go to parents' evenings, said, 'Your Martin's a bit of a character, I must just tell you this ... ' and they'd always have a funny story to recite about the things that Martin had done. And they still say that now." Once a year the family goes to present a trophy that the Sir William Robertson school in nearby Welbourn gives in Martin's name - it goes to a pupil who has offered support in some way to their peers.

"He would have made an excellent nurse because that was his nature - he loved people around him, he had loads and loads of friends. The funeral was just unbelievable - the number of youngsters that turned up. The headmaster said to us, 'We all know Martin was a people person. He was always there if there were any problems.' So each year, rather than going to someone who's good at maths, the award has gone to someone who has been supportive. I feel that's an honour to Martin's memory."

Martin donated his heart, liver, kidneys, lungs and corneas: his liver to Andrew Seery, who otherwise faced certain death; and his heart to a 15-year-old boy, who is now 20 and doing well. "I have had a letter from his mum," Sue says, "and I'm thrilled that we saved one mother from what I've gone through." Has it helped to know that her son's death has given life to others? "I don't think there was any comfort or consolation at first because grief is pretty selfish and all you think about is your own loss. It takes some time before you stop thinking of yourself and your loss and start thinking, I wonder what happened, I wonder how they're doing, I do hope they're doing well."

The Burtons have become involved in the Donor Family Network, a charity that supports donor families and promotes awareness of organ donation. "The biggest hurdle we face when we're out talking to people is that they shudder at the thought. We don't like to talk about death, but at the end of the day it's going to happen to all of us."

Sue doesn't try to persuade people to register as donors; instead she encourages them to discuss it within the family, to at least prepare for the possibility. Nor does she support a switch to presumed consent, whereby you would have to de-register as a donor rather than register. Such a switch is supported by Gordon Brown and the government's chief medical officer, but was yesterday rejected by the organ donation taskforce - a decision she welcomes.

"I don't believe the law should be changed," says Sue, "I need to see it as a gift, and I think a lot of recipients do as well. They can only deal with the fact that somebody else has died to allow them to live because they know that the family voluntarily gave that organ as a gift."

The transplant coordinator: Deirdre Cunningham

Deirdre Cunningham, head of the East Midlands Donor Team, has been a transplant coordinator for 20 years, making her one of the most experienced in the country. She was the link between the Burton family and liver recipient Andrew Seery (see below), at a time when transplant coordinators dealt with both parties. But since 2005, when a structural change was made which acknowledged that more emphasis had to be placed on encouraging donors, she has worked exclusively with families in hospitals, doing that uniquely tricky job of suggesting the value of organ donation without attempting a heavy-handed "sell" to the grieving family, all in the space of the few hours within the moment of death when the organs can be used for transplantation.

"We have that conversation at some stage when the family have an awareness that the patient is going to die and as soon as they almost accept that death is inevitable," says Cunningham, a sparky, 46-year-old "mad woman from Northern Ireland", as she describes herself. "Unless you've got your head around the fact that death is inevitable, there's no point in having an organ donor conversation because you're still hoping that your next of kin is going to make a recovery."

She says the change in the role has made that conversation more transparent. "We have no knowledge any more of patients who are waiting for organ donation, so we are purely focused on the bereaved family, to make sure they have a good death. Whatever they need in death, we can support them through that in a very unrushed fashion. They can assist us with the laying out of the body, they can have keepsakes such as hand prints and locks of hair, they can get into bed and cuddle the patient as they die."

Cunningham began her career as an intensive care nurse in Belfast before moving to London, where she decided to switch to the field of transplants. "When I first worked in Belfast I had a 17-year-old donor, and the dignity of that family and the amount that person was able to give and the benefit it brought has always stayed with me. Then I came to London and worked in a renal unit, and saw for the first time people with renal failure and their dreadful lifestyles - even the colour of their skin, they're just drained and grey, old before their time - and the miraculous effect that a transplant can have. When I was doing my renal course in London, I had a lecture from a donor coordinator who was also called Deirdre and I thought, one day I'd like your job."

The number of "deceased donor coordinators" in the UK is being doubled, and the intention is that they - rather than overstretched nursing staff - will talk to the family in the hours or days when their relative is on life support.

Does Cunningham attempt subtle persuasion? "We never persuade. We tell the family it's important to think about what kind of person he was, and what they feel he would say if he was here having this conversation. You pull out strands and try to break those down until you have a decision from the family. About 40% of families will say yes or no immediately, but you have about 25% sitting in the middle who won't have a clue and who've never had a conversation about organ donation with the deceased."

Cunningham has strong views on the contentious issue of presumed consent. "The arguments make people feel that we are wasting organs every day and that by changing to a new system it would automatically mean thousands more organs becoming available," she says. "But that's never going to be the case because we have a finite number of potential donors [the causes and circumstances of death will dictate whether it is possible to donate], and no matter what the laws are, that's not going to change. All you would do is get the backs up of the general population. People do not want the state to own their bodies or to decide what happens to them. They want to be able to make their own decision."

She has her own solution to the growing gulf between the number of available organs and the number of people who need a transplant. "What I would like to see is a system of mandated choice," she says, "so that when you turn 16 and are allowed to go for your provisional driving licence you also get a letter through the post saying, 'What do you want to do about organ donation?' You have to make a choice at that stage, and then that choice must be supported in law. So if you choose not to become a donor, you don't become a donor; if you choose to become a donor, you become a donor, regardless of the wishes of your family."

She also believes any future move to presumed consent - the taskforce has not ruled out revisiting the issue, which they describe as "finely balanced" - would accentuate the guilt some recipients feel. "A lot of our patients who have received organs do feel survivor guilt," she says, "because they have survived while somebody else has died, and it's lovely to be able to say to them that it was the patient's own wish to become a donor, or that the family offered donation and freely gave this gift. I don't know how presumed consent would sit with patients like Andrew, who had guilt, because the organ then is taken for you rather than given, and I think that's a very different concept."

The recipient: Andrew Seery

Andrew Seery's problems did not begin in May 2003 when he was rushed to hospital with liver failure. They began almost on the day he was born, 39 years ago. He was born with porphyria, a genetic condition that affects the nervous system. In Andrew's case, it made him highly sensitive to light, so that if exposed to the sun his skin would blister.

Nor was porphyria all he had to contend with. His father drank, his mother suffered a mental breakdown and at the age of nine he was taken into care. At the age of 12, parentless and in pain, he contemplated suicide; he even decided how to do it and was ready to act. Then, alone, on a riverbank, he felt a presence - "an old man who looked at me and shook his head. I was really scared because I knew I shouldn't have been doing this, so I bottled it." It was a key moment on the path to what has become central to Andrew's life - his Christian faith. "I kept praying more," he says, "and I found that everything was going to be all right. I started seeing more humanity in people."

At the core of his life now is his family - his wife Geraldine and their children Robert, 15, and Charlotte, 13. But so is Christ. He talks of "Joy" - "Jesus first, Others second, Yourself last." How that faith has been tested. As well as porphyria, the intolerance to light and the broken home, in 2003 his liver failed as a result of his disease. "My life was turned around in seven or eight weeks," he says, "from being a normal sort of guy, going to work six days a week, to being in hospital needing an emergency liver transplant."

It was touch and go whether Andrew would survive. "I was in a wheelchair and my weight had fallen to 6st 4lb. My wife thought I wasn't going to make it, and I think, to be honest, that was the doctors' opinion, too." There is usually a nine-month waiting list for a liver transplant, but such was the seriousness of his condition that he was put on a priority list. At 4am one Friday in August 2003, while Andrew was having one of his short stays at home, the phone rang. A liver had been found, an operating theatre at Addenbrooke's in Cambridge booked, the operation would be done that morning - just over a month after it had been decided that a transplant was the only option.

Things went badly afterwards. There was initial rejection, Andrew got pneumonia and MRSA, and each time he came home he deteriorated and had to return to hospital. But then, suddenly, joy. "I got to that Christmas and they were considering another transplant. I came home, went back in the January, did some tests, and the doctor said, 'Well, I don't know what's happened but the liver has improved remarkably.' I've had reasonably good health for the past five years. As long as I'm careful [about sunlight] I can lead a pretty normal life." This summer, for instance, he did what would once have been unthinkable: went on a family beach holiday to Cornwall.

Even so, this "normality" involves weekly blood transfusions to boost his red blood cells and counteract the damage the porphyria causes to his new liver. The transfusions take up a day and a half, meaning that he can work only three days a week at the hairdressers he owns in Basingstoke. This would be an ordeal for most of us; he talks instead of the people he meets on his trips to hospital and the wonderful friends he has made there. More joy.

He admits to mixed feelings about his life having been saved as a result of someone else's tragedy. "You couldn't have much of a conscience if you weren't aware of that fact." Initially, there were feelings of guilt "because I knew after a week where the liver had come from. I knew he was called Martin, that he was 16 and that he had died suddenly, so I did have in my head that it might have been an RTA [road traffic accident]. I didn't want to write straightaway because it was like I was alive and this lady's son was dead. But eventually I told the transplant coordinator that I wanted to say thank you and, coincidentally, Sue Burton had also expressed a wish to see how I was doing."

Psychologically, he says he found it difficult knowing he had someone else's liver. "I talk to the liver occasionally," he says. "When the porphyria is bad, I say hang on in there. It feels like I'm living two lives. In fact, with all the blood transfusions, I'm like loads of people really."

He nevertheless disagrees with the taskforce's decision to reject presumed consent. "There is guilt but there's also a desire to live," he says, "and I'm very disappointed by the decision. I've talked to hundreds of people here at the salon and the overwhelming majority would support a change to an opt-out system."

Andrew accepts he has a lot of thank yous to say. "I have to thank the blood donors, as well. I have a process through that: I always thank God and I thank the person who does the donating, and bless them, because if you didn't have people that gave, I wouldn't be talking to you today. People assume this stuff is there, but it isn't just there. I was the same - apathetic about becoming a donor. My wife gives blood regularly now, and our children want to as well, when they reach the starting age of 17."

And the future? "I'm really enjoying life. I've still got the same problems, I still get wound up about little things. I cancelled my pension years ago, not that it was doing great. When something like that happens so quickly, you can't plan too far ahead. I prayed that I could live long enough for my children to grow up. But then you start getting greedy and your daughter says, 'I want you to walk down the aisle with me, Dad,' and that chokes you a little."

The surgeon: Paul Gibbs

'I don't remember many of the liver transplants I've done," says Paul Gibbs, the surgeon who operated on Andrew Seery, "but I do remember this one." Because Andrew's porphyria makes his skin susceptible to burning, "we had to do the transplant with UV filters on all the theatre lights and with screens on the windows blocking out all natural light, so the theatre was very strange. We had lots of people come in and say, 'What on earth's going on in here?' because it was very dark apart from these pools of blue light around the anaesthetic area and the operation itself."

Gibbs, a transplant surgeon specialising in livers and kidneys at Addenbrooke's in Cambridge, is 50, funny, open, not at all godlike.

"I knew you'd ask me that," he says when I ask him why he became a surgeon. "I wanted to do something to make the patient better, and it is very satisfying when you start doing surgery. Take a patient with appendicitis.

I remember doing my first appendix. They've gone to theatre, they've got appendicitis, they're very sick; you take their appendix out and they're better. They go home and they're cured. That appealed."

But why become a transplant surgeon? "The reason I chose transplantation, which is not mainstream, is that most surgery is taking things away from people. You take a cancer, chop it out and join the two ends together. That's excellent, but you don't actually restore normal function entirely. You take a large part of their stomach out for stomach cancer and leave them with the residue. You don't put a new stomach in, so you're not restoring normality.

"It's different with transplantation. I first saw it in Glasgow in a kidney context. There's a patient on dialysis, having to come up for dialysis three times a week, stay in the hospital for four hours, feel absolutely awful for the rest of the day. You put a new kidney into them and you restore them to normal life. They don't have to come to hospital, they can go home, get a normal job, do anything; women could have children - they very rarely do on dialysis. So instead of just operating on someone and removing things, you put something back into them and you give them back a normal life. It's even more dramatic with liver transplantation, where the existence in the final stage of liver failure is an existence in the shadows, a partial existence - it affects you mentally in the end, you can't even think properly. A new liver transforms them, and that is a very satisfying thing to do."

A standard liver transplant takes five or six hours of surgery, with another couple of hours needed for preparation by the anaesthetist. Gibbs stresses the role of the latter - that this is a partnership. "It's a complex procedure, both surgically and physiologically for the patient and therefore for the anaesthetist," he says. "When you don't have a liver you're not making a lot of the normal proteins and performing a lot of the homeostatic mechanisms that are necessary for life. And, depending on how you do the liver transplant, you also might cut off part of the blood supply back to the heart, so you might need to put them on to bypass. The anaesthetist needs to support them during that procedure. In some cases, where there has been a lot of bleeding, it's the anaesthetist who has a crucial role as much as the surgeon - it's a real team event to get the patient through."

The operating team, typically, is seven strong: the lead surgeon and two surgical assistants; the lead anaesthetist and an assistant; a scrub nurse making sure the surgical instruments are sterile; and a runner - "though normally they walk", says Gibbs - who does all the fetching and carrying.

Usually, the team gets a break during the patient's eight hours in theatre. "There are certain parts of the operation where there is a natural stop. If you've been operating for three or four hours, you need a break. You can go on longer and if it's a very difficult case and there is a lot of bleeding you'll get an adrenaline rush and you'll go on for as long as you need. But naturally it's much better to take a break. One of the stages is you get the liver out, put the new liver in, plumb the blood vessels into it, you get reasonable blood clotting achieved, then you go off and have lunch and leave it for half an hour for the anaesthetist to stabilise the patient and also for the new liver to start working. That's a useful period of time for the stabilisation of the patient as well as good for the surgical team to have a rest."

Does he ever worry about the life in his hands? "You never think that," he says. "You don't go into an operation thinking if I do this wrong, this patient will die, because if you did that all the time you wouldn't be able to do it. You're talking to the anaesthetists, or to the other surgeons, about what you did yesterday or what you are doing at the weekend. If it's a difficult, concentratey bit, you concentrate and stop talking, and then you start talking again. You'll talk about the problems of this surgery with the assistant, or if it's a bit that's fairly straightforward you'll be talking to the anaesthetist or the scrub nurse about something else. They often tease people. It's very relaxed and there's lots of black humour."

The scientist: David Adams

I had been a little anxious about meeting David Adams, professor of hepatology at the University of Birmingham, and one of Britain's foremost scientists working in liver disease and transplantation. He is part of the network of people less visible than those in the operating theatre, yet whose work crucially underpins successful organ transplantation. But the description on the university website of his early research work, conducted in the US almost 20 years ago, made me doubt whether I would understand much of what he did. "He was involved," says the biography, "in work demonstrating the ability of chemokines sequestered by proteoglycans in the glycocalyx to activate lymphocyte adhesion and migration."

Thankfully, in person, the modest, softly spoken, multi-titled (he mentions four posts he holds) Adams recognises my ignorance and attempts a less polysyllabic explanation. "I'm a physician as well as a scientist," he explains in his poky office at the Institute of Biomedical Research in Birmingham. "Very early in my career I got interested in trying to understand the mechanisms that underlie the rejection of liver transplants - particularly, how do the cells that cause the rejection get recruited into the liver; what are the signals that get them there?"

The problem seems to be that the white blood cells that invade the liver are confused: some are promoting immunological tolerance (a good thing) while others are damaging the liver (clearly a bad thing). "What we need to be thinking about in the future," Adams says, "is much more subtle therapies, where we can enhance the good white cells that promote the acceptance of the graft while switching off the ones that cause the damage and destroy the graft. At the moment we don't really know enough to be able to do that confidently, so there's a huge international programme of research to try to resolve that."

One of the benefits would be to spare patients anti-rejection drugs that can have damaging side-effects: "Ultimately, we would be able to have conditioning treatments that the patient would have at the time or immediately after their transplant that would switch off all those harmful immune responses."

Adams says there are advantages in being both a scientist and a working doctor. "Translation is the buzzword in science at the moment," he says. "You translate from the bench to the bedside. There's no doubt that we need really good basic science to answer the fundamental questions about disease processes. There's also no doubt that we need full-time clinicians who can run clinical trials. But what's really important is the bridge between the two, so it's having people like me who, hopefully, understand and work on the basic science, but who are also clinicians and see how that basic science can be applied."

There is, though, unlikely to be a Eureka! moment in the search for the key to understanding which cells cause rejection. "The timescale is incredibly long to develop something from first principles through to a new drug," he says. Adams' department has just received a National Institute for Health Research (NIHR) award that will transform the scale of its research. But he recognises it is a double-edged sword. "For the first time in my career I've now got the facility to do what I've been saying I was going to do for all these years. It's incredibly exciting, but it's also slightly scary."

The transplant tsar: Chris Rudge

Kidney transplant surgeon Chris Rudge has just started his new job when we first meet. For seven years, he headed the national transplant service that matches and allocates organs - Martin Burton's were among them. Now he has been seconded to the Department of Health as national clinical director for transplant. Lest we be confused by these long-winded titles, the DoH is happy to use the shorthand beloved of newspapers and, it seems, this government - he is the new "transplant tsar". That means he will be responsible for implementing the recommendations made by the organ donation taskforce earlier this year and achieving the targets it set: a 50% increase in donors and 1,200 extra transplants a year in the next five years.

Rudge is 60, pleasingly straightforward and evangelical in his commitment to making more organs available and thus saving lives. "Approximately 8,000 people are at this moment waiting for a transplant," he says. "Last year, 3,200 patients received a transplant, but also last year 1,000 patients died who had been waiting for a transplant. That's 1,000 named individual people, with families, children, wives or husbands - 1,000 people who went on the list waiting for a transplant and the phone call never came, and they died. To me it's a very personal issue. A lot of people are dying and we need to do something about it."

The need for organs has become critical. "You have a situation where the success [in transplantation] has never been greater, but the shortfall has never been greater either." Plenty of people - around 15 million - are registered as donors in Britain. The problem is that only a tiny fraction, perhaps 1%, will die in a way that allows them to be donors.

Most of those who die of cancer, organ failure or infection are ruled out because the chance of passing the disease to the recipient is too great. Equally important is speed in removing and transplanting the organs, again limiting the number of potential donors. "To be a suitable donor," Rudge says, "the patient must not only be free of cancer and infections, but must also die in circumstances that allow organ donation to occur quickly after death. In practice, this really means that they must die in intensive care units, or occasionally in emergency units, and also in circumstances where their families are available for the detailed discussions that are needed. The number of people dying in these circumstances is only about 1,500 to 2,000 a year, so the pool of potential organ donors is actually very small."

The "classic" donors will have died in road accidents or of strokes, but in both cases numbers are falling. It is a perverse truth that our relatively safe roads have undermined the transplant programme. The government's answer is the transplant tsar and a doubling of the number of donor coordinators in hospitals.

Prime minister Gordon Brown and chief medical officer Liam Donaldson have argued strongly that the solution in the long run is presumed consent, and it is possible that the government will override the decision of the taskforce and proceed with an opt-out system. But Rudge gives his full support to the report unveiled yesterday, and argues that such a change is unnecessary and of doubtful value. "It's a very good, thorough, comprehensive report," he says, "and I am relaxed with its conclusions. One of the most important findings is that there is no evidence to demonstrate that a switch to presumed consent would make a difference."

It is not the size of the national register that is the key factor, but the willingness of families to release organs from that pool of 2,000 or so prime donors (some families even contradict the wishes of those on the register and refuse donation). Reaching - and converting - those grieving families is central to meeting the taskforce's targets; presumed consent largely a distraction. "I am confident we can achieve a 50% increase in organ donation over five years without any change in legislation," insists Rudge.

Back to those highly charged conversations in intensive care. "The first step is to make sure the relatives are approached," he says.

"I would never want to put pressure on them - it's something that's very personal and very private. But there's a lot you can do to encourage people to come to believe that agreeing to donation is the right thing."

He cites the increasing number of "live" organ donations - not just of kidneys but now of parts of livers, too - as evidence of the severity of the shortage. There is a one in 200 chance of live organ donors dying during the procedure. "It's a sign of the desperate plight we're in," he says. There are some 700 "deceased" donors a year, but that only scratches the surface, given the waiting list of 8,000. There are 320 patients registered as waiting for a liver, but this excludes many who would benefit but are deemed to have too low a chance of survival.

The shortage of organs means the calculus is brutal.

Rudge realises that the success of his tsardom will hinge on the response of the public. "We know from our own experience as transplant surgeons that very few patients, if they're told they're going to die but they could have a transplant, will say 'No, I don't want to have a transplant.' If we'd all accept an organ that somebody else agreed to donate, then we ought also to think whether we'd be prepared to donate our organs."