The head of a kidney charity has launched a stinging attack on the Government, saying it will miss a target to boost organ donor rates by 50%. Tim Statham, chief executive of the National Kidney Federation, said too many people were dying because of poor strategy around boosting donor rates from people when they die.
The Organ Donor Taskforce, set up under Labour, was disbanded when the coalition came to power but no new one has been formed to replace it, he said. And he added that the target set by the taskforce to increase organ donor rates by 50% by 2013 will be missed.
In response, a live kidney donor has called for greater education about giving organs altruistically.
Speaking to The Huffington Post UK, Diane Franks, who donated her kidney anonymously in 2009, highlighted “a lack of knowledge” about the procedure. “Obviously, the NHS can’t go around advertising ‘we want your kidney’, but speak to teenagers, children and adults about living kidney donation and they haven’t a clue what it’s about. If more education was done in schools and colleges, you’d find the kids of today would be tomorrow’s donors,” she said.
NHS figures suggest that the vast majority of people waiting for an organ in the UK are kidney patients.
According to Statham, the Department of Health maintains that the 2013 target for donation will be met but he is "absolutely certain" that it will not."
"We have spoken to people in the Department of Health and to Chris Rudge (who was tasked with boosting donation rates) and they agree it will not be met,” he said.
"We are currently at about 27%, which has been achieved over the last four years, with only one year of the target left to go. We are certain it is going to be missed." Statham said work urgently needed to be carried out to identify the problems around donation, adding there was a "huge amount of spin" from politicians.
"The message from a politician or NHS Blood and Transplant is that we must get more people to sign the organ donor register. Of course we want people to sign the register but the plain truth is that we have 18 million people in this country signed up to the register already. Every day, 400 of those die but do you know how many of those are being used as donors? Two."
Statham said not all the remaining 398 people who died each day were suitable donors but just two more every day would cut the waiting list for kidney transplant patients to zero.
"Two deceased donors gives us four kidneys and we get three kidneys a day from living donors. If we could double the number of deceased donors from two to four, we would have eight kidneys plus three from living donors. In five years, that would get rid of the waiting list completely."
Statham said those running organ donor programmes were "set in their ways" and there was currently nobody spearheading the drive to boost donor rates. As well as ensuring only people with proper training deal with bereaved relatives, one idea that could be implemented would be to bring back donor cards.
This would help raise awareness and provide a discussion point between people and their relatives, Statham said.
"To get rid of that in favour of an online register was a mistake. We believe it is crucial to have an online register but it could be improved. As soon as a person signs up online, they should automatically be sent a donor card. It should have the signature of the carrier but also of the closest relative - this would ensure the discussion about donating has taken place."
Statham said the signature of a closest relative would also give staff in hospitals the name of a person to approach to discuss the donation or their loved one's organs.
"It's very depressing for our patients that simple steps could be taken and yet no progress is being made."
Statham said transplanting more organs would save the NHS a "fortune" as it would be much cheaper than dialysis, which costs around £27,000 per patient per year.
"Three kidney patients die every day waiting for transplant, there are 25,000 people on dialysis and around 7,000 on the transplant list".
He also criticised NHS Blood and Transplant for being too "upbeat" in their assessment of the situation, despite the fact that people were dying.
It comes as NHS Blood and Transplant set out plans today to help increase the number of people willing to be living kidney donors. Statham said: "Any attempt to increase the number of suitable donors is to be welcomed.
Franks, who donated her kidney three years ago, first heard of the procedure from a friend who had similarly given an organ in America.
“The idea just grabbed me there and then,” the 59-year-old told The Huffington Post UK. "It seemed a fantastic, wonderful, amazing thing to do for somebody. I knew I wanted to do it… and make a huge difference in someone’s life.”
When Diane first made the decision to go ahead in 2005, the procedure wasn’t legal in the UK. That changed in 2006 and by 2008, after years of research, her intention had solidified into action.
She said she “couldn’t care less who the donation went to."
"It was just something I wanted to do to help somebody else.”
Before the operation, Dianne had suffered some medical problems of her own that had restricted what she was able to do on a daily basis. Her own suffering, she thinks, focused her mind.
“To me, this was a superb way of making the biggest difference to someone’s life that I could ever do without too much effort from me. It didn’t take long-term commitment or brainpower. I just had to do it,” she said.
Diane spent a year looking into the medical risks involved. “I wasn’t jut going to do this because my heart told me to,” she said. “On the medical side there was nothing I came across where I thought ‘oh no – that’s not for me’”
She didn’t tell anyone her plans except her ex-husband and her son. “I didn’t want people throwing it back in my face and making me feel bad,” she said. “If I didn’t tell people, no one could accuse me of being attention-seeking.”
Dianne was finally granted approval in 2009, and within days her name was put on a national database. The first two possible candidates didn’t match, which she found “very distressing”. The third did and she donated her kidney.
“I’ve never met the person I donated my kidney to,” says Diane. I know a few donors who have, but only because the recipient asked. “I just wanted to be altruistic.”
Live donation is on the increase. Last week, transplant nurse Allison Batson, 48, donated a kidney to a hospital patient in an Atlanta hospital she had known for just six weeks.
Yet altruistic gestures may not be the answer. As statham points out: “Every time you do a living donation, it's usually because you have not been able to do a deceased donation.”
It seems non-live donation remains the key.
"There's still a lot of people dying every day who are not having their organs used after their death, who said they wanted that to happen,” Statham adds. "More attention needs to be paid to their wishes."
The National Kidney Federation is in favour of a national system of presumed consent. Health Secretary Andrew Lansley is known to be opposed to such an idea in England, which is currently being considered in Wales for implementation by 2015. There are currently almost 7,000 kidney patients on the organ donor waiting list, out of a total list of about 8,000.
In 2010/11, there were 1,502 kidney donations from dead donors and 1,020 from living donors.
NHS Blood and Transplant announced today it wants to launch a strategy to increase transplant activity from living kidney donors. To do this, it aims to set up a steering group to develop an implementation plan for the strategy.
In a written Parliamentary answer last March, public health minister Anne Milton said the Government had "no plans to publish an updated strategy" from central government on organ donation and transplantation.