The biggest gift

SUE Nelsn will never forget sitting at the side of her sister Louise's hospital bed when the time came to switch off her life- support machine.

At the age of 38, Louise - once described by Sue as: "My beautiful, tall, willowy younger sister with the lovely brown eyes that crinkled at the corners" - had suffered two brain haemorrhages.

Nothing could take away the grief that followed Louise's death, Sue says. But one thing did help.

"Louise carried a donor card, as I do. We were sitting around the bed when the doctors switched the machine off, saying goodbye to her. And it was my mother who told them she had a donor card and we wanted to do something about it."

The family told the medical staff and a team swung into action. Not in an intrusive, insensitive way, Sue says. "They were absolutely superb - very kind, very caring."

Louise's death was tragic, but because of her forethought in carrying a donor card, her family was able to find great comfort in what came after.

The corneas from each of her eyes were used to help restore the sight of two men living in the north of England.

Some of her bone was used by a hospital in Bradford to help a road accident victim with smashed-up limbs walk again. More bone and tendons were donated to other patients.

Even her skin went to medical science, to be used in skin research that would help develop new skin-growing techniques for burns victims.

None of that took away the pain of her sister's death, Sue says. "But it helped us, enormously. It is four years since Louise died, and it still helps us."

The question of organ transplantation can be intensely difficult. None of us likes to think we are going to die. But that difficulty condemns thousands of people every year to languish on transplant waiting lists, desperately awaiting a match.

According to UK Transplant, more than 9,000 people in the UK need an organ transplant that could save or dramatically improve their life.

Most are waiting for a kidney, others for a heart, lung or liver transplant.

Sadly, however, because of a desperate national shortage of organs for donation, fewer than 3,000 transplants are carried out each year.

The consequence of that is simple. More than 1,000 people in the UK died last year for want of an organ transplant - almost three deaths every day.

The tragedy is that while around nine out of ten people in the population generally favoured transplantation, only 14.9 million people are signed up to the NHS Organ Donor Register - about a quarter of the population.

At the moment, for our names to be included on the organ donor register, we have to "opt in". That is, we have to make a deliberate choice to ask for our name to be placed there.

Other countries, such as Spain, operate a different system where citizens "opt out" of having their name on the register.

In other words, if they don't like the thought of their organs being donated once they die, they have to ask for their name to be taken off the register.

A special task force is looking at the question of whether we should operate a similar system here.

At the weekend, writing in a national newspaper, Prime Minister Gordon Brown gave his public backing for such a system of "presumed consent".

"Of course, any opt-out' system would - in cases where the potential donor is not on the register - leave the final decision with the family: that is only right and proper," the Prime Minister wrote.

"But a system of this kind seems to have the potential to close the aching gap between the potential benefits of transplant surgery and the limits imposed by our current system of consent."

Sue Nelson certainly agrees that moving to an opt-out system is the way forward.

She understands how difficult and sensitive a subject organ donation is. And she understands that there may be families who, regardless of whether their loved ones were on the organ donor register or not, still find it hard to contemplate the mutilation of their body after death.

She finds that hard herself, she says. "If I'm totally honest, I don't think about that bit of it," she said.

"All I know is that Louise's soul is with us: it wasn't in that body. And there are so many people in need, who might die without a transplant. We have a moral duty to help each other."

One little boy who is living proof of just what a miraculous gift a transplant can be is four-year-old Ben Sloper.

The Tollerton youngster was diagnosed with a rare condition known as restrictive cardiomyopathy, which thickens the heart muscles, when he was five months old. He came close to losing his life last year when he suffered two cardiac arrests on the way to hospital.

Ben's heart stopped beating both times, and he had to be resuscitated. Then he faced an agonising three-and-a-half month waiting on a waiting list before a suitable donor could be found.

Today, he's a happy, healthy little boy who has just started at school - a miracle, as The Press described him last month.

His father, Tim, is an enthusiastic supporter of an opt-out, presumed consent system for organ donation if that would make more organs available for transplant.

"It's a good idea. Ben had to wait three-and-a-half-months," he said. "And seeing how many people were waiting for a heart at Newcastle where Ben was treated - when you see the little babies waiting, it makes you think. I support this idea wholeheartedly."

Civil liberties and switch-off

THERE is no doubt that a system which assumes we consent to our organs being donated on our death unless we request otherwise would save lives.

In his column at the weekend, Prime Minister Gordon Brown suggested the potential was there to save "thousands of lives that would otherwise be lost".

Some groups, however, are still concerned about the proposals, which they see as trampling over civil liberties.

Joyce Robins, of Patient Concern, told BBC Radio 5 Live that presumed consent turned "volunteers into conscripts".

"Presumed consent is no consent at all," she said.

The Bishop of Southwark, the Right Rev Tom Butler, has also voiced concerns - urging that before we go down such a route, we should first make every effort to persuade people to "opt in" to the register voluntarily.

York GP Dr Brian McGregor, of the Gale Farm Surgery, understands such concerns.

Organ donation is a private and emotive affair, he said - and there may be families who were totally opposed to it, even if their loved one expressly asked to be a donor.

There would be something a little Big Brother-ish about a move to presumed consent, he admitted. It would be essential that systems were in place to ensure a person who was brain dead or in a coma had no possibility of recovery before any decision was taken to harvest organs for transplant.

But he said overall the advantages of presumed consent.

"It would be a good thing because of the number of people who would benefit.

"As a physician and a part of the NHS family, I can see that we could do so much more for so many more people."

Sue Nelson agreed.

There would never be any question of medics hovering around the beds of patients in a coma, waiting for them to die so they could harvest organs, she stressed. Things just didn't work that way.

"When you've been in that situation of watching a loved one's life support switched off, you realise there is nothing to fear," she said.

"There was no question of the doctors and nurses in my sister's case hovering. They were wonderful with us."

Ultimately, Dr McGregor stressed, transplant teams would never go against the wishes of surviving family members - whether a loved one who had died was on the organ donor register or not.

Transplant facts

Between April 2006 and March 2007 in the UK:* 3,086 organ transplants were carried out * 949 lives were saved through a heart, lung or liver transplant, or a combined heart/lungs, liver/kidney, liver/pancreas or heart/kidney transplant.

* A further 2,402 people had their sight restored through a cornea transplant.

* Nevertheless, there are still more than 8,000 people in the UK waiting for a transplant.

* Every year, more than 1,000 people die for want of a transplant.

* At the moment, there are 14.9 million people on the NHS Organ Donor Register - just under a quarter of the population.

* To ensure join the register, phone 0800 6060400 or visit uktransplant.org.uk

Looking at system...

Two task forces are looking at changing the way in which the UK NHS Organ Donor Register is run.

One, which was expected to release its findings today or tomorrow, will call for more transplant co-ordinators to be hired and for 24-hour transplant teams to be set up.

A second task force is looking at the question of whether the UK should move to an "opt-out" system of presumed consent, which would mean all UK citizens being on the register unless they specifically asked not to be.

The second task force is expected to report back in the next 12 to 18 months. It is the finding of this task force that Prime Minister Gordon Brown effectively pre-empted when he wrote in support of presumed consent at the weekend.