Simon Needs was on a sailing holiday in Southampton when a glance in the mirror informed him that his eyes had turned yellow. A property developer and man of sufficient heft to accommodate most of life's nasty surprises, he took some antibiotics and thought no more about it. That was on Friday. On Monday he was diagnosed with hepatitis A. On Tuesday he went into hepatic failure and was rushed to King's College hospital in London. By the end of the week, 41-year-old Needs was in a coma and his family had been summoned from Bedford to exchange final goodbyes.
Over the next two days, Needs' life hung not on the skill of surgeons, but on the mobilisation of a small group of administrators on the outskirts of Bristol. The UK transplant centre is a two-storey building at the back of a business park. It takes several goes round the roundabout and a circuit of Sainsbury's car park to find it. "I'm sure people read the sign and imagine we have freezers full of organs here," says Sue Sutherland, the centre's chief executive. Her 100-strong team coordinates every organ transplant in Britain, matching donors to patients. While accident and emergency wards scramble through the mire to save lives, the transplant centre executes its rescues in the atmosphere of a local reference library.
Sutherland's team have a problem. Over the past 10 years, the number of organs available for transplant each year has fallen by roughly 1,000, and, though there is no evidence yet of a fall-off, there are fears that the Alder Hey scandal will deter potential donors. Hence the £3m initiative launched yesterday by Alan Milburn, the health secretary, to double the number of people on the donation register. "We want to reassure the public that there is a great difference between donating an organ for transplant and for postmortem," says Sutherland.
Bernadette Porter can testify to that. On Saturday afternoon, while Simon Needs and his crew docked at Southampton, her 15-year-old son Paul was taking a walk 600 miles away, along a headland known as the Knab in Lerwick, Shetland. It is a beauty spot overlooking the North Sea, where Paul used to sledge in the winter and ramble in the summer. "He was so fit and healthy, intelligent and beautiful," she says. "He was really interested in science and thought it was awful that his dad and I didn't carry a donor card. He was quite determined to carry one himself."
The grass was slippery that September day and, suddenly losing his footing, Paul fell 60 feet on to the rocks below. After a joint rescue operation by police, coastguards and the lifeboat service, he was taken to Lerwick's Gilbert Bain Hospital with serious head injuries, from where he was flown by air ambulance to Aberdeen Royal Infirmary and put in intensive care. "It took a week for him to die," says Porter. "When the hospital asked if they could use his organs, I would have been horrified if Paul hadn't prepared me for it."
The critical factor in all transplants is freshness: the shelf life of a kidney is 24 hours, a heart or lung six, a liver 18 to 20. Kidneys are the most in demand: of the 5,500 people on the active transplant waiting list, almost 5,000 of them are waiting for a kidney. By comparison, there are 150 or so people in the queue for a liver. Whatever the organ, judicious allocation must take place at the centre within two or three minutes of the hospital identifying a donor. "A hospital's transplant coordinators will give us a ring after the patient's first brain-stem death test," says Sutherland. "It's not until a patient has undergone two sets of tests that he is declared absolutely done for. At that point we would begin to think about where that organ is going to go."
Simon Needs' condition was severe enough to shoot him to the top of the liver queue. Only two people a year get liver failure through hepatitis A. "He got better and then got worse again," recalls Nigel Heaton, the consultant surgeon who performed Needs' operation. "At that point he went to the top of the national priority list, so that if a liver became available anywhere in the UK, it would be offered to him." The average adult patient in Simon's position waits 36 hours for an organ to become available. "We once went 10 days without one, for a patient who was listed as super-urgent," says Heaton. "That patient died."
The precariousness of Needs' position forced the centre to relax its requirements: as a patient in n-stage - critical and with a few days to live - the perfection of the tissue match was compromised by the need to keep him alive. Duty managers at the transplant centre are faced, on receipt of a case like Needs', with the certainty that within 24 hours they will be processing at least one death: either the patient's or a donor's. If the atmosphere at the centre is bland, it is deliberately so, contrived to protect staff from the psychological impact of auditing human organs. "The staff in the duty office are admin people, with no clinical backgrounds," says Sutherland, a former nurse and midwife. "This makes the whole thing completely objective. They key in the donor's details and it brings up matches with suitable recipients. There's no 'Oh, he's a nice bloke. Let's give it to him today.' To us it's an organ and you have to forget about the deceased behind it."
At 4.30pm on Friday September 22 1995, Paul Porter was declared brain dead. The following morning, after a second brain-stem test, his death certificate was signed, and at 9am the hospital's transplant coordinator called the UK Transplant Centre with news that a liver had become available. Within minutes the centre's database, stored on four computers on the first floor, had identified a positive match with Needs. This is the hub of the operation, the traffic control centre through which organs are placed at a rate of 12 or so a week. With a minimum of fuss, a call was put in to Nigel Heaton at King's College hospital.
When Heaton received the call, he assembled a team of two surgeons, a scrub nurse and a surgical assistant, and dispatched them to Heathrow. They had 20 hours to get to Aberdeen, harvest the organ and return to London. Heaton made the decision to charter a plane at a cost of £5,000 (to have collected the liver by commercial airline would have cost £360; by car £200-£300.) The importance of using a company experienced in handling organs can be vital. "If a liver is put in the aircraft's hold by someone who doesn't know what they are doing, it can be exposed to temperatures of minus 60 degrees," says Heaton. "The liver freezes and that will kill the patient."
Since then, transplant teams have been organised into regional zones, so that a liver in Aberdeen will be retrieved by a team from Edinburgh and passed on from there. In 1995, however, there were no such arrangements. "We have flown hearts from here to Berlin in an executive jet," says Jetmund Engeset, the vascular transplant surgeon at Aberdeen.
Only two categories of patient are forbidden to be donors: those who have died from HIV- or CJD-related illnesses. Once the organs have become available, priority is given to children on the waiting list, then to n-stage adult patients, and finally to those non-urgent patients nearest in age and tissue type to the donor. If the first-choice patient falls through, a call goes out offering the organ to every transplant centre in the country. The first to snap it up within 30 minutes gets the organ.
"The key thing is to allocate the organs equitably," says Sue Falvey, a duty office manager at the transplant centre. "If there are no urgent patients registered, then the organ will get offered on a rotational basis. If Manchester, say, accepts a heart, then it [that hospital] would rotate to the bottom."
By 8pm that Saturday night, Heaton's team had begun the operation to remove Porter's liver. His kidneys had also been allocated: one to a patient in north Staffordshire, the other to a six-year-old boy in Manchester. By 10pm, Heaton's crew were making their way back to the airport. They arrived back in London a little after midnight and the delicate transplant procedure got under way. "People with acute liver failure often have swollen brains or their lungs aren't working properly," says Heaton. "It's possible to die during the operation from severe lung failure." By Sunday morning, however, Simon Needs was successfully in possession of a new liver. A month later, weighing six stone less than when he was admitted, he awoke from his coma and was discharged.
He is a broad-shouldered man, dedicated in the aftermath of his operation to squeezing as much from life as his shot-through stomach will allow. "I went through a little bit of 'I've got someone else's liver' squeamishness," he says. "A few people called me 'porky' because there was a lot of talk about transplanting pigs' livers at the time. But after that I adjusted quickly. It is no more artificial than the drugs they inject into you. I'm not up to 100% - I can't play contact sports - but I am sailing round the world at the end of the year."
After recovering, Needs was encouraged to send an anonymous "thank you" letter to Paul's family. "It can take recipients a year to write that letter," says Sue Johnstone, of Time, the organ donation charity operating from the ground floor of the centre. "How do you find the words to say 'thank you' for your life? There is guilt as well. Some recipients think of it in terms of, 'Somebody had to die in order for me to live.' But that's not true. They would have died anyway."
"We have to maintain complete confidentiality," says Sue Sutherland, "but we will say that the heart went to Essex, for example. If the two sides are desperate to have contact then they will. There are cases of families who have met up and feel that their loved ones have lived on in somebody else."
"I was so pleased to receive that letter," says Bernadette Porter. "We've all felt a lot happier knowing that Paul has given someone a new lease of life. I don't know that I could have coped as well if this hadn't been the case. I've felt enormously curious about the recipient, but you don't want to frighten them by making them feel they have this emotional bond with some stranger who lost a child."
When Simon Needs sails round the world, it will be on a yacht called The Gift of Life, with a 30-strong crew composed entirely of people who have benefited from transplant operations. "I want to show the value of transplants," he says. "People imagine that after a transplant you will only be around for another couple of years. I'm going to live until I'm 80."
There are eight million registered organ donors in Britain - 12% of the population. It is the aim of both Needs and the centre to motivate the 40% of Britons who say they are in favour of donation but are too lethargic to register, by reminding them that one third of patients on the waiting list die.
"Only 2,500 transplants take place a year," says Sue Sutherland. "We are at the small end of the business. But the impact a transplant has on a patient's life is profound." It is a fact, says Needs, that he his happy to go 30,000 miles round the world to illustrate.
"On bad days I still think what was the point of it all?" says Bernadette Porter. "But then I think of Paul, what a joy he was and how we loved having him all those years and, in the end, how he did so much good for so many people. It wasn't a waste, his life."
