The donor system is in a critical condition

Born with liver disease, Naomi has already endured a lifetime of hospital appointments and has spent more time in GPs' surgeries than she cares to remember.

The daily medication is something she has grown used to, but in March this year she began to feel seriously unwell. Further investigation revealed that her kidneys had also now failed and the following month she was told she would have to start dialysis immediately.

The diagnosis forced her to give up her job with the Youth Hostel Association in Malham and Naomi moved to Harrogate to be closer to St James's Hospital in Leeds where three times a week she spends four hours hooked up to a dialysis machine

"It came as a complete shock," says the 25-year-old. "Although I'd always had health problems, a transplant wasn't something that was on the cards. Suddenly everything changed. I've worked all across the country for YHA from Boggle Hole in the Yorkshire Wolds to North Wales, but when the doctors sat me down to tell me I would need both a liver and kidney transplant I knew that I wouldn't be able to work.

"I've always loved being outdoors and travelling, but now I'm so restricted. There have been bad times before, like when I was doing my GCSEs and was suffering from really painful tiny fractures of the bones. The pain in my legs was agony, but I just tried to focus on studying and passing my exams.

"Even then I didn't feel as in limbo as I do now. When you are waiting for a transplant it just completely rules your life."

As a by-product of Naomi's condition, she also suffers from anaemia, but while she does get tired easily, since leaving Malham she has begun volunteering when she can at the Harrogate Homeless Project and is putting her fine art degree to good use by running occasional art classes in the town.

The regular dialysis sessions have also given Naomi a lot of time to think and she, like many others, has become convinced that Britain's system of organ donation is in need of an overhaul.

"When you are waiting for a transplant your entire life is put on hold and every day you wake up thinking, 'I wonder if today's the day'," she says. "My blood group is the most common, which in one way means there are likely to be more donors, but because those organs are compatible with any other blood group, it also means that they tend to go to emergency cases.

"You try to be strong, but there are days when it gets on top of you. I know there are lots of people who die waiting for organs and I just don't want that to be me."

Behind the statistics there are a thousand personal stories like Naomi's and the situation for many is critical. Demand for organ donors has increased in recent years and now far outstrips supply. The situation has partly arisen due to the ageing population, but medical breakthroughs and improvements in treatment now also mean there are more people than ever before who can benefit from, and are therefore put forward for, transplants.

That all means that each year in the UK 1,000 people die while waiting for transplants. About 8,000 people are on the waiting list at any one time, but last year only 3,5000 transplants were carried out and, in some areas, the figures are startling low.

Earlier this year Bradford Teaching Hospitals NHS Foundation Trust revealed that since 2005, just seven people in the city had allowed their major organs to be donated following their death, and West Yorkshire as a whole has one of the lowest sign-up rates to the organ donation register in the UK.

At the moment Naomi's mother, Patrice, and father, Phil, are being tested to see if they are a suitable match for live donation surgery. The early results appear positive. The plan is for her father to donate part of his liver and her mother a kidney, and the family believe it would be the first dual live transplant to be carried out at St James' Hospital.

"My dad's been joking that he should wrap it up as a Christmas present, but I'm trying not to get too excited until we know for absolutely definite that it can go ahead," says Naomi. "They were both really keen to do it, I guess that's being a parent, but of course I'm nervous that because of me they will both potentially have to undergo major surgery.

"Also I know there are a lot of people who don't have someone in the position to donate and even if family members do come forward, there's no guarantee they will be a match."

The issue of organ donation is a contentious one. The Nuffield Council on Bioethics recently carried out a 12-week consultation in which they asked the public whether it was ethical to use financial incentives to increase donations, whether that be organs or eggs and sperm.

As well as cash payments or contributions towards funeral costs, other options including priority for the donor if they require a transplant later in life, the payment of more generous expenses and the introduction of a certificate and thank-you letters to the donor or their family have also been mooted. However, the idea of financial rewards has caused concern among many health groups, who fear such a scheme may be open to abuse.

"The idea of paying living donors for organs is abhorrent, as this would be tempting the poor to risk their lives," says Joyce Robbins, co-director of the campaigning group Patients Concern.

"Paying the family of someone who has just died could tempt them to go against the wishes of a loved one at a time when they are most vulnerable."

Individual concerns aside, most do recognise that something must be done to increase the numbers of those on the register and the first meeting of the Government's All Party Parliamentary Group for Transplantation will take place next week.

Among the issues to be discussed will be the introduction of an opt-out scheme where everyone is automatically placed on the donor register unless they say otherwise. The idea was backed by the previous Prime Minister, Gordon Brown, and many now think the time is right for a national debate on a possible way ahead.

"The first thing I did when Naomi was told she needed a double transplant was give blood and get a donor card," says her father, Phil, who lives in Pickering.

"It had always been something that I had meant to do, but like a lot of people I had just never got round to it. I guess part of me didn't want to think about not being here any more and what would happen when I'm gone, but when something like this happens to your own child it brings everything into sharp perspective.

"Organ donation has almost been a victim of its own success and with more and more people now eligible for transplants the situation is only going to become increasingly critical.

"We knew right from the start that Naomi was in for a long wait and of course like any parents we didn't hesitate to put ourselves forward as a possible match.

"It's nice to be able to do something, but long-term the whole way we approach organ donation does need to be looked at.

"It's why we want everyone to encourage their MPs to go along to the parliamentary meeting on December 15 so we can start the ball rolling."

For Naomi and the thousands of others like her, the changes couldn't come quickly enough.

"Having a transplant is not an option, it's a necessity," she says. "All I want is my life back."

Figures that don't add up

There are more than 8,000 people waiting for an organ transplant, a figure which rises by eight per cent each year.

Kidney dialysis costs 25,300 per patient each year, whereas a transplant has an initial cost of 49,500 followed by annual treatment costs of 7,100.

Last year, 3,709 organ transplants were carried out, thanks to the generosity of 2,021 donors.

Following a campaign to increase the number of people on the organ donor register, a million more people have signed up, bringing the total to 17.4m as of September 2010.

To join the organ donor register online at www.uktransplant.org.uk or call 0300 123 23 23.