The heart of the matter

Sammi Sparke is one of 5,600 people waiting for organ transplants in Britain. Many die waiting. Clare Rudebeck reports on a scheme that could change the rules of donation

Sammi Sparke needs a heart and lung transplant. When she first went on the waiting list in 2000, she still led an independent life. She drove a car. She went out shopping with friends. Like many 20- year-olds, she was busy studying for a degree. But her condition is deteriorating. She suffers from cystic fibrosis, a life-threatening genetic lung defect, and now two and a half years later, she needs oxygen 24 hours a day and finds it difficult to get up stairs.

"I miss my old life," says Sparke, now 23, from Cambridgeshire. "I miss going out to visit friends. I miss having any kind of anonymity. If I go anywhere I need someone else to carry my equipment." But she is still doing her degree in humanities at the Open University and hopes to get a job in the media, preferably television, when she graduates.

Earlier this year, her case was reviewed as doctors feared that she was now too ill to undergo surgery. Fortunately, she is still on the transplant list, but she knows she cannot wait much longer. "The transplant would be a second chance at life," she says. "There aren't words to describe it. I know it sounds silly, but the one thing I'd love to be able to do is run up a hill. Because I have cystic fibrosis, even when I was OK, I still couldn't do sport."

There are currently 5,600 people in the UK waiting for a transplant operation. The footballer George Best had been on standby for nearly eight months when he was told a suitable liver donor had been found last week. Following a successful eight-hour operation, his chances of surviving for five years are now 64 per cent. Others are not so lucky. On Monday it was announced that the numbers of organ transplants fell by 13 per cent this year. Some people will die before a suitable donor can be found for them. Last year, 60 people died waiting for a new liver, and 30 died waiting for a new heart and lungs.

Sammi Sparke believes that the only way to save these lives is to change the system. At the moment, people declare their willingness to donate their organs after death by carrying a donor card. Sparke would like to see this practice reversed. She believes consent to organ donation should be presumed unless a person has registered their objection before death. "I don't think a 'presumed consent' system is going too far," she says. "Why can't a country such as Britain – which is enlightened in so many ways – be progressive in this too?"

Tom Watson MP agrees with Sparke. "Studies show that 70 per cent of the population would be willing to donate their organs after death, yet only 15 per cent of the population have signed up to the NHS Organ Donor Register," says the Labour MP for West Bromwich East. In March, he introduced a Bill to the House of Commons that proposes that people "opt out" of donation by signing a national register if they do not want their organs transplanted after death. The Bill, which is currently waiting for its second reading, is supported by the British Medical Association. Last month, the Department of Health signalled for the first time that it was willing to consider the move. The Scottish Parliament is also currently considering the issue.

Similar systems are already in place in Belgium and Spain. Sparke believes the change would help the families of organ donors. "I think this system would force people to talk about the issue before they were faced with it themselves. People would be better prepared for decisions about organ donation," she says.

Dr John Evans, whose son was a multiple organ donor, disagrees. "I'm 101 per cent against a system of presumed consent," he says. "It's an intrusion on the liberties of the grieving families. They are the ones who morally should have the right to decide what happens to their loved ones." Following his son's death in 1983, Dr Evans set up the British Organ Donor Society to support the families of both donors and recipients. He believes the proposed system would risk damaging the public's confidence in the medical profession, just as the Alder Hey scandal did when children's organs were taken for research without parental consent.

Tom Watson's proposals would, in fact, still give the family of the deceased the final say over donation. But Dr Evans says he would not support this "soft" option. "The bereaved family should be the prime consideration not the secondary," he says. "The issue ought to be considered from the point of view of the bereaved family, not the point of view of the people who are going to benefit from a transplant."

He believes that the decision to donate organs should only be made after death by relatives of the deceased. "Only 1.25 per cent of the population have been through the experience of a family member having their organs transplanted. They are the only ones who really understand what's involved," he says. Families can change long-held beliefs when actually faced with the decision, he says. He knows several families who had been opposed to organ donation, but, when faced with the choice in hospital, had changed their minds and allowed their relatives' organs to be used to save another life.

Friendships between the families of donors and recipients are not uncommon. After Nicola Pearson, from Consett, Co Durham, died in a car crash in 1996, her heart was donated to 29-year-old Paul Savage, who had part of his heart missing from birth. Savage has now formed a friendship with Nicola's parents, Ray and Elaine Pearson. Last month, Paul and Ray abseiled down the wall of Freeman Hospital, Newcastle, where the transplant took place, to raise money for charity. Nicola's liver also saved another patient, her kidneys saved two more lives and her corneas gave two people back their sight.

For Sammi Sparke the wait goes on. One of the reasons why she has waited so long is that she has a rare blood group, B+. Another factor is her size: she is relatively small at 5' 2" tall and most organs that come up for donation are simply too big. But she is also paying the price for other saved lives. "Advances in medicine mean that fewer young people are dying," says a spokes-person for UK Transplant, the government body responsible for overseeing organ donation. "More children are surviving meningitis. Fewer young people are dying in road accidents. In the past, these people would have become donors."

For more information about organ donation call 0845 6060 400