Mission: To be a resource for transplant information; to be an advocate for organ & tissue donation awareness; to promote funding for transplant research.
A new law has been passed to create the first opt-out organ donation system in the UK.
The Human Transplantation (Wales) Act will turn the donation process on its head. It means that people not wanting to give up their organs after their death must sign a register - rather than choosing to take part.
Once implemented, people will have to choose not to donate their organs and it would apply to over-18s who die in Wales if they have lived in the country for more than 12 months.
Ministers hope a soft "opt-out" scheme - praised by medical experts but criticized by some religious leaders - will drive up transplant rates and save lives.
Wales First Minister Carwyn Jones heralded the new law as historic.
He said: "The Act has had a long genesis through committees and through the Assembly. It happens to be the most significant piece of legislation the Assembly has ever passed."
The Act was unveiled in the media suite of the Welsh Government's offices in Cathays Park, Cardiff, during a special ceremony.
The three-stage process began with the Queen signing the Letters Patent before Mr Jones, who also holds the title of Keeper of the Seal, used a hand-wound press to stamp the Act.
The new legislation became official after being given Royal Assent.
The Welsh Government has long said there is a desperate need to drive up transplantation rates - with 226 people in Wales waiting for a transplant.
Officials hope the new legislation will increase donors by around a quarter.
Once implemented, people will have to choose not to donate their organs and it would apply to over-18s who die in Wales if they have lived in the country for more than 12 months.
Organs made available under the system would be the same as the "opt-in" method - including kidneys, heart, liver, lungs and pancreas - and would not only go to donor patients in Wales. They could go anywhere in the UK.
The scheme faced opposition from some religious groups, which claimed it would make conscripts out of donors.
But ministers have denied this and described the system as a "soft opt-out".
They say it will allow relatives or "friends of long standing" to object to someone's organs being used if they had not asked to be removed from the register. The final decision will rest with medical staff if they decide to continue with the process - provided a match has been found.
Organs donated in Wales under this method will go anywhere in the UK and vice-versa.
The new law will come into effect on December 1 2015.
Ministers will stage a two-year, £8 million publicity drive in the meantime so people are well briefed about the changes.
“You Have the Power to Donate Life – Sign-up today! Tell Your Loved Ones of Your Decision”
Under the Bill, people over the age of 18 who have been a resident in Wales for more than 12 months will have to put in place a clear indication of their wish not to donate their organs for them to be excluded from donation after death, otherwise their consent will be deemed to have been given.
By Julia McWatt, Wales Online, Jul 3, 2013 Wales will become the first nation in the UK to introduce a policy of presumed consent for organ donation after AMs voted in favor of historic legislation to bring in changes to the system.
The Human Transplantation (Wales) Bill was approved by the National Assembly, with 43 AMs in favor and eight against, following a lengthy and passionate debate on controversial changes to move to an “opt out” system.
Under the Bill, people over the age of 18 who have been a resident in Wales for more than 12 months will have to put in place a clear indication of their wish not to donate their organs for them to be excluded from donation after death, otherwise their consent will be deemed to have been given.
Last night campaigners celebrated the decision after years of lobbying for the change and said the measure would help to save lives. Currently 226 people in Wales are on the transplant waiting list and three people a month die while waiting for an organ.
The British Medical Association’s Welsh Secretary, Dr Richard Lewis, said: “I believe that this is the most important piece of legislation created in Wales since the laws of Hywel Dda.
“A few years ago, Wales was ready to lead the UK on banning smoking in public places, but we didn't have the necessary legal powers.
“This time we are delighted that our National Assembly has shown the rest of the UK the way forward and fully support its implementation. We congratulate AMs for their enlightenment. Patients across the country will now benefit directly or indirectly benefit from this Bill.
“BMA Cymru Wales and other organisations have been campaigning tirelessly for many years to persuade politicians in Cardiff Bay that this is the right decision and address concerns about how it works. This is the culmination of years of hard work.
“We must all now work hard to ensure that the system works and that everybody understands it.”
Roy J Thomas, chief executive of Kidney Wales Foundation, said: “Deemed consent has a positive and sizeable effect on organ donation rates. Wales has been at the forefront of organ donation with development of the Organ Donor Register in the 1980s to having the DVLA communicate on the issue when sending out driving licenses.
“This law is further progress and evidence shows it will increase donation rates. The new deemed consent system in Wales needs to be given stewardship and trusted to the medical profession.
“In opting for this law Assembly Members are opting for life.”
The “opt out” system, which the Welsh Government believes will result in a 25% increase in the number of available organs in Wales, will come into place in 2015.
Following the vote, the Bill will go to Royal Assent and £4m will be spent communicating the changes to the public.
The Bill is the biggest – and one of the most controversial – pieces of legislation to be made since devolution with faith groups opposing the idea of presumed consent.
People can continue to opt in, opt out or choose not to act and have their consent deemed.
‘Novel’ forms of transplant, such as face and limb transplants, will always require express consent, and people can also opt out of donating certain organs, as is the current process.
One of the legislation’s fiercest critics, the Archbishop of Wales Dr Barry Morgan, has previously said he believes it undermines the idea of organ donation being a ‘gift’.
Prior to the debate a joint statement by faith groups had urged AMs to vote in favour of amendments to give further power to family members.
Health Minister Mark Drakeford had made previous amendments to give the family a “clear right of objection” if they could prove they were aware of the wishes of the deceased.
But during the debate, Shadow Health Minister Darren Millar, who voted against the Bill, echoed calls by faith groups for the legislation to give families the option to decide, rather than convey whether they knew the wishes of deceased.
He said: “I am very supportive of organ donation. The importance of the gift of organ donation cannot be underestimated and should be promoted. For the loved ones of someone who had died, donation can make a positive contribution to the grieving process.
“I’m opposed in principle to a system where organ transplantation becomes a passive act, and consent for it is presumed, or as the Bill puts it deemed, by the state. We need to ensure and inspire public confidence in whatever system we have.
“Family members should have the right to object from their own views.”
However, Prof Drakeford rejected the calls and said a “good deal of mischief” had been made over the role of the family. He said accepting Mr Millar’s proposals, the Bill would “not be what we want it to be.”
He said the Bill was a “historic day” for Wales and showed that Wales was a “progressive nation”.
“This is a Bill that offers hope and hope to people who have no other. People whose very lives depend on transplantation,” he said.
Speaking after the vote, he said: “I am proud that Wales will be the first nation in the UK to take this step. As a society, we have shown we are prepared to take action to increase organ donation and to provide hope to those people waiting every week for a transplant.
“Family refusal is a major factor that affects the numbers of organ donations and the main reason for refusal is lack of knowledge of their loved one’s wishes.
“The family of the potential donor has a major role to play in organ donation. The aim of the Bill has always been to respect the wishes of the deceased, however, relatives or friends of long standing may object to consent being deemed based on what they know about the views of the deceased.
“The new law will work by clarifying people’s wishes around the issue of organ donation and, in turn, increase the rate of consent to donation.
“Today is a landmark day for Wales, and I expect the rest of the UK to be watching with great interest when the legislation is implemented in 2015.”
Mr Millar said: “This has been a landmark day for Wales and – while I hope this achieves the increase in organ donation we all want to see – there is still much work to do.
“The coming months and years must now be spent intensively educating families and communities the length and breadth of Wales.
“This is a significant change from the previous system that remains controversial – and no stone must be left unturned in getting the message across.
“Welsh Conservative amendments focusing on children and the vulnerable, nominated representatives, capacity in critical care, and the rights of the family were all extremely important.
“I remain concerned that not all of our concerns were properly addressed in the legislation and look to the guidance on transplantation to address these issues. We look forward to scrutinising the implementation in due course.”
Leader of the Welsh Liberal Democrats Kirsty Williams supported the Bill and said it was vital that people discussed their position on organ donation with their family.
She said: “The fact is that lives will be saved if this Bill is passed. Significantly, it will also ensure that the issue is given more prominence and that people across Wales will be talking about organ donation. Three people die every month waiting for a transplant. That is three too many.
“We have been told that this legislation will not be enough to increase donor rates, therefore the publicity campaign is important so we carry on urging others to have these conversations.
“Talking about these things does not come easily. It almost seems the very suggestion might in some way make it more likely to happen to you or one of your loved ones, but those discussions must happen. It’s only by having those discussions and having this publicity about what donation can do that will drive up donation rates.”
Plaid Cymru’s health spokeswoman, Elin Jones, said:“The Bill is an important piece of legislation which is sure to save lives in Wales.
“However the Welsh Government must not be complacent on this issue. These changes to the law need to be supported with a concerted effort to raise awareness of this matter organ donation, to ensure that the people of Wales are aware of the impact of the choices they make on this matter.”
Members of the medical profession said they would do all they can to help make the Bill a success for Wales.
Professor John Saunders, chair of the ethics committee of the Royal College of Physicians (RCP), said: “The RCP welcomes effective moves to increase organ donation.
“My colleagues and I will do all we can to help make sure it is a success. This will mean changes to the way we think about organ donation and the way we organise our transplantation services.
“Wales is leading the way with this Bill, and we will be seen as the test case for other countries. If this Bill is to make a real difference to people’s lives, we must do all we can do to ensure that we measure the benefits properly.”
“You Have the Power to Donate Life – Sign-up today! Tell Your Loved Ones of Your Decision”
Wales is expected to become the first part of the UK to bring in an opt-out scheme for organ donation.
The Welsh Assembly will hold the final vote on
the Human Transplantation (Wales) Bill later,
which if enacted would bring in a system of "presumed consent"
for organ donation.
Under the proposals, people in Wales will have to clearly indicate that
they do not wish to give their organs when they die in order
to be excluded from the donor register.
Kidney Wales Foundation (KWF) has campaigned for the proposed
change in the law for the last five years and believes that
donor organ availability could be boosted by up to 35%
if it goes through and many more lives could be saved.
"The UK is one of the lowest donor rate countries in Europe," said
Roy Thomas, KWF chief executive.
"The new Bill is new progressive law. We are proud to have led
the debate in favour of this law.
"When introduced in Belgium only 2% opted out, currently only
around a third of the Welsh population is on the organ donor register and this is around the same for the UK as a whole."
Those against the proposals claim it will cause extra distress for
bereaved families and could put medical staff in a difficult position.
The UK currently has one of the lowest donor rates in Europe
Laura Raffour's four-year-old daughter Ava was born with a life-threatening liver condition and underwent heart surgery and two liver transplants before her first birthday. In total she has undergone over 60 operations.
Ms Raffour, who is now on the organ donor register, said:
"Ava has been given a second chance at life and I want other people, young and old, to also have a better quality of life.
"For us, organ donation comes down to the premise that if you're
willing to take, you should be willing to give. Simple as."
In 2004, Gaynor Taylor from Barry, South Wales, lost her 23-year-old
champion skater son Richard in a freak accident.
They had never talked about being an organ donor but Ms Taylor
eventually agree to donation.
She only later found out that Richard put his name on the
NHS Organ Donor Register without telling anybody.
"While we were in favour of organ donation, knowing his wishes made
the whole process a lot easier to accept and meant we had done the
right thing by him," she said.
"Making a decision on whether to allow donation is a very difficult
decision at the most traumatic time.
"Six people's lives were saved as a result of donating Richard's organs and the recipient of Richard’s heart went on to win gold at the Transplant Games
which is an incredible story and proves something positive can sometimes
come from tragedy."
If the legislation is passed, a two-year public information campaign will
follow in Wales to ensure members of the public are fully informed on
what the changes will mean and how to make their wishes known
through a single organ and tissue donation register.
Yet a group of faith leaders and senior health professionals in Wales
have issued a joint statement calling for a soft opt-out option,
which would take into consideration the views of bereaved families.
The signatories, who include the Archbishop of Wales, Dr Barry Morgan,
and the Catholic Archbishop of Cardiff, George Stack, said:
"The law must be amended in this way if it is not to be inhuman, unfeeling before the suffering of relatives, and a danger to the public trust and support which are necessary for the practice of organ donation to flourish.
"Without this there is a real danger that the law could backfire."
One person dies every week in Wales waiting for an organ transplant.
The figure for the UK as a whole is three people a day.
“You Have the Power to Donate Life – Sign-up today! Tell Your Loved Ones of Your Decision”
The issue of an opt-out system of organ donation continues to be the focus of discussion whenever various countries officially discuss what to do about the lack of available organs for transplantation. This opt-out proposal by an advocacy group in Wales differs from some other jurisdictions in that relatives would still be consulted at the time of death.
CAMPAIGNERS fighting to increase the number of organ donors have urged Wales to follow Belgium’s lead.
The Kidney Wales Foundation believes Belgium’s decision to introduce an opt-out organ donation scheme shows how changing the law can increase the number of donors.
And it has said Wales should heed the Belgian example.
The calls come as the Welsh Assembly Government prepares to publish a range of options for organ donation in Wales.
It is thought that one of these will be the introduction of an opt-out system.
Wales, like the rest of the UK, currently has an opt-in organ donation system – people who want to donate their organs after their death must sign up to the Organ Donor Register.
But there is growing support for a “soft” opt-out system – also known as “presumed consent”.
Under this system people who do not want to donate their organs would have to register but relatives would still be consulted at the time of death.
Roy J Thomas, chair of the Kidney Wales Foundation, said, on the eve of the first anniversary of the Donate Wales campaign: “The brutal reality is that people in Wales waiting for a transplant are dying because of the shortage of donors – statistically, it’s one person every 11 days.
“We stand at a crossroads where the urgency for change has never been greater.
“Kidney Wales has looked carefully at the way in which other countries in Europe have benefited from the introduction of an opt-out system.
“In the 23 years since this system of organ donation was adopted in Belgium, for example, many more hundreds of lives have been saved in comparison to Wales.
“A responsible and factual debate on this health issue is needed.
“A change to an opt-out system of organ donation, coupled with the introduction of more donor co-ordinators in Welsh hospitals, would lead to hundreds more lives in Wales being saved by the gift of organ donation.”
Belgium introduced its “soft” opt-out system in 1986 and increased the number of transplant co-ordinators at the same time.
Just 2% of the population has opted out of organ donation – by registering at their local town hall – and the national rate of organ donation rose by 55% within five years.
The latest figures show that in Belgium there were 291 deceased organ donors in 2007 compared to only 51 in Wales – Belgium has one of the highest rates of donors per million people in the world.
There were 488 kidney transplants carried out in Belgium in 2007 from deceased organ donors. During 2007-08 in Wales there were only 84 kidney transplants using cadaveric organs.
Sara Griffiths, 46, who has had a kidney and a pancreatic transplant and lives in Raglan, Monmouthshire, said: “Being on the waiting list for a transplant is gruelling – you’re alive but you’re not living.
“People on the waiting list need hope, they need to know that something proactive is being done to lessen their burden.
“To hear that an opt-out system is being considered would give people on dialysis something to hope for because with more organs available there is a better chance for a life.”
An Assembly Government spokesman said: “Health Minister Edwina Hart is committed to increasing organ donation in Wales and has taken action to achieve this.
“She has worked closely with Kidney Wales Foundation and funded the Donate Wales: Tell a Loved One campaign which aims to encourage people to sign up to the organ donation register and, importantly, to explain their wishes to relatives.
“In addition, a series of public debates were held across Wales to gauge people’s views on organ donation and the issue of presumed consent.”
A summary report of the responses to the debates is due to be published today, along with a consultation document which sets out some specific options for changes to the organ donation system in Wales.
“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”
Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves
Diagnosed with pulmonary fibrosis (IPF) in 1999. Received a single-lung transplant in April, 2002. Am now an advocate for Organ & Tissue transplantation and research.
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