“The UK needs to change its law on organ donation as it is not likely to achieve the UK Organ Donor Taskforce target to increase organ donor rates by 50% by 2013” says Kidney Wales Foundation.

In a statement to the Media, The National Kidney Federation has confirmed that the UK would not reach the 50% target.

Kidney Wales Foundation today supported the stance of the National Kidney Federation who stated too many people were dying because of a poor strategy in efforts to boost rates of donation when people die.

The UK Organ Donor Taskforce set a target to increase organ donor rates by 50% by 2013.

The NKF said that the Department of Health in Whitehall has stated that the target will be met but the NKF are absolutely certain it will not be.

Roy J Thomas of Kidney Wales Foundation said:

“England is currently at about 27%, which has been achieved over the last four years, with only one year of the target left to go. The message from those who oppose Opt Out legislation such as Westminster MPs and London Professors is that we must get more people to sign the organ donor register or that education is needed. They stand still in the dark ages and do not see progressive change or have the vision needed to change culture. Education programmes on organ donation have been happening in the UK for decades and still three people die every day waiting in the UK and one person dies a week in Wales.”

“With an Opt Out system there would be more organs available. More importantly, there would be a change in culture. We need more organ donors as there are currently only 33% of the population on the register whereas over 90% would give.”

Mr Thomas added: “In the UK, 400 of the 18 million people signed up to the organ donor register die every day. Only 2 go on become organ donors. Simply not enough.”

Roy J Thomas said: “Opt out is a change of emphasis; it is about giving; it is a change in culture. Transplanting more organs would save lives and save the Health Service in the UK a fortune compared to the cost of dialysis.”

The change in legislation is supported by leading Welsh charities.

Dai Williams, Director, Diabetes UK Cymru said:

“One complication of diabetes can be kidney failure, and pancreas transplants for people with diabetes are becoming increasing common. We support a change to Opt Out and welcome any move than increases the number of organs available for donation in Wales.”

Chris Mulholland, Head of BLF Wales, said:

“Lung disease is a growing problem in Wales, as the recent figures on hospital admissions show. Some patients with lung disease could benefit from a transplant. Increasing the number of organs available could make a big difference, which is why we welcome the proposed opt-out system.”
Martyn Hutchings, Chairman, Welsh Kidney Patients Association said:

“The WKPA supports the new soft opt out law safe in the knowledge that there will be ample opportunity for people to opt out and loved ones will continue to be consulted about donation. Over the years our members have trusted NHS staff to advise and oversee their treatment and to act ethically and within the guidelines for organ donation. There is no reason to believe they will not continue to act responsibly and sensibly in implementing this change in procedure here in Wales, to ensure donated organs are not seen as “assets of the state.” Our Association supports the soft opt out law because we are confident it will improve matters for everyone across the UK.”

The General Secretary of the Presbyterian Church of Wales (PCW) is supporting the proposed changes to the law on organ donation in Wales.

With 300 people in Wales presently on the waiting list for a donor organ, the Welsh Government is proposing an ‘opt out’ system of organ donation. It hopes this will increase the number of donors, allowing more lives to be saved and improving the quality of life for patients. The government’s public consultation on its White Paper, Proposals for Legislation on organ and tissue donation, closes today (31 January).

General Secretary, Revd W. Bryn Williams, and the PCW’s Church and Society Department both support the principles of presumed consent, arguing that correctly-administered legislation will be beneficial.

“We feel that we have moral obligations to use the members of our bodies to benefit fellow human beings,” said Revd Williams. “However, tight safeguards would have to be ensured, as much of the cause of concern regarding these changes is to do with the details of the legislation. We would require the best possible guarantee that it will not be possible to improperly administer the system. We also seek assurance that the scheme will be widely supported by an ongoing communications campaign.”

The Presbyterian Church of Wales’ Church and Society Department has submitted its views on the proposed Bill as part of the consultation.

“Our starting point is the Sovereignty of God over all that people and institutions do”, it argues, “and, in our tradition, the emphasis is upon the right and duty of individuals to interpret what this means in any particular moral choice. With that in mind, we offer the following approach to the question of organ donation and the soft opt-out option.

“The human body is sacred and while we have life and breath, we have a responsibility to care for and respect our bodies and those of others as well. This duty applies whatever the condition, quality of life or status of the person concerned and these duties of care and protection apply to the social and community institutions of family and government. There can be no basis for diminishing that duty because a person is old, sick or otherwise.

“Death, however, comes to us all and when that happens our bodies return ‘dust to dust and ashes to ashes’. We believe the future of the spirit remains in the hands of our Creator, but the body will decay or be burned. Modern technology has in some cases, such as kidney failure, helped fulfil the duty of care and respect for human life. If the number of organs available for transplant is insufficient, then the state has, on our collective behalf as a community, to find proper ways to try to make good that deficiency.

“With the safeguards suggested above, individuals in Wales will be made aware of what is proposed in the scheme and have the opportunity to opt out. In these circumstances, there are very good reasons to support the chance presented in the scheme of improving the life opportunities of people who would otherwise suffer or die early.”

This view is in contrast to that of several other Christian leaders in Wales, who have expressed their disquiet at the proposed law.

The Presbyterian Church of Wales has around 28,000 members in some 650 churches as well as strong links with churches abroad. Its purpose is to worship God and spread the Gospel of the Lord Jesus Christ.

Please download the OPT FOR LIFE Supporters pack and submit your response to us before the 25th January. Your support will directly help to save lives in Wales.

http://www.kidneywales.com/files/67-1396-file.pdf

Thank You

OPT FOR LIFE CYMRU STATEMENT

PRESS STATEMENT ON WELSH GOVERNMENT WHITE PAPER ON OPT OUT

Tuesday 8 November 2011

A White Paper published today outlines legislation due to be enacted in Wales which would see the country become the first part of the United Kingdom to have an ‘Opt Out’ organ donation system.

Despite advances in transplantation medicine organ shortage is the single most limiting factor preventing potential recipients from receiving the benefits of transplantation. One person dies a week in Wales waiting for an organ transplant.

A number of countries – notably  Belgium in 1986– has been cited as dramatically increasing their donation rates following the introduction of presumed consent.  Belgium went from 18.9pmp to 41.3pmp three years after the introduction of presumed consent

Roy J Thomas Chairman of Kidney Wales Foundation “ This is progressive move by Wales and our partners Diabetes Cymru, British Heart Foundation, The British Lung Foundation, the British Medical Association are organisations that bear witness to the need for more transplants. The UK has one of the lowest donor rates in Europe. Wales will take the lead and show that we must presume to have conversations on this important issue.”

There is concern that Wales might not have the service capacity, ITU beds, theatres, hospital staff, transplant co-ordinators and trained staff to cope with the increased number of donors resulting from presumed consent.

Roy J Thomas added “Presumed consent in itself is not the solution but rather a key facilitator which must be enacted in conjunction with a well developed system and infrastructure for organ donation and transplantation. This two pronged approach has been shown to deliver ongoing positive results for those whose lives are blighted and shortened by being on a waiting list for a transplant.”

Mr Thomas said “There has already been a significant increase in the number of donors in Wales to 66 in 2010/11 and the people of Wales understand this debate. Wales already has the highest rate of donors in the UK at 27.7pmp. There are a number of projections as to the extent to which this is likely to increase following the introduction of presumed consent. One key research is that of Abadie and Gay where figure of 25-30% increase is predicated that would mean there would be an increase to about 83 donors or 35pmp.”

Transplantation has generally been shown to be a cost effective solution particularly when examined from a societal perspective. The annual average cost for example of dialysis is £23,177 compared with an initial cost of £42,025 for a transplant followed by £6,500 annual maintenance costs (ODTF). The UKBT has shown that the existing transplantation programme realised gross annual savings in excess of £300m for the UK against alternative medical treatments. The impact of increasing organs available by 50% by 2013 (their target) would increase savings to the NHS by an additional £200m per annum.

Transplant Activity in Wales 2010/2011

There was a 60% increase in the number of deceased donors to 66 (in Welsh hospitals). The number of donors after brain death increased by 45% to 39 and after circulatory death by 90% to 27. There was an increase in the Welsh consent rate after brain death from 59% to 66% and after circulatory death from 28% to 62%. The number of patients registered for a transplant fell slightly to 306 were waiting at the end of March 2011 and 122 had been temporarily suspended. 49 died waiting. Nearly 200 patients received treatment.

Donated organs and tissues are currently allocated for transplantation according to need and the matching of blood and tissues type, on a UK basis. The Welsh Government’s policy intention is that the introduction of a soft opt-out system in Wales will not alter the clinical decision making for, and processes associated with, transplantation.

NOTES

Who will be included in the soft opt-out system?

The soft opt-out system for Wales will apply to people aged 18 or over who live in Wales, and who have had the opportunity to make an objection to donation of their organs and tissues in the event of their death if they so wish.

The soft opt-out system will only cover those people who both live and die in Wales and have lived in Wales for a sufficient time in order to gain knowledge and understanding of the system.

The reason for this is to ensure that such people will be aware of the system and know of the mechanisms to object; it cannot be expected that people who visit Wales will know of the arrangements, and have had the opportunity to object.

Views on the period of time individuals must have lived in Wales before being included within the soft opt-out system are sought as part of the consultation on the White Paper.

Who will not be included within the proposed soft opt-out system?

The following will not be included within the soft opt-out system:

• persons who die in Wales but who do not normally live in Wales (for example visitors);
• persons who die in Wales and normally live in Wales, but have not lived in Wales for the required length of time;
• persons who usually live in Wales, but who die outside Wales;
• persons who cannot be identified at their death;
• adults (those aged 18 or over) who do not have the capacity to understand and make a decision about objecting to donation;
• children and young people aged under 18 years of age;

These categories of persons have been excluded as the Welsh Government recognises that the proposals can only apply to those who have a sufficient opportunity to object to donation.

Where can I get further information?

Phone Kidney Wales Foundation on 029 2034 3940 / Tristan on 07590 216 784 or e mail tristan@kidneywales.com

www.optforlife.org

The White Paper consultation can be found on the Welsh Government website

http://wales.gov.uk/consultations/?lang=en&ts=1

You can also email organdonation@wales.gsi.gov.uk

JOINT STATEMENT FORM KIDNEY WALES FOUNDATION, PEOPLE LIKE US CYMRU AND BRITISH HEART FOUNDATION

Kidney Wales Foundation jointly with People Like Us Cymru and British Heart Foundation have today (21/09/11) launched a website, Opt For Life Cymru. The purpose of the website is to provide information about the change in Organ Donation legislation proposed by the Welsh Government.

Roy J Thomas, Chairman of Kidney Wales Foundation said:

“Families and patients are concerned about the misinformation and inaccurate scaremongering that appears in debate. The website informs those who wish to see proper information and should be relied upon in discussions going forward.”

Melanie Wager who heads up People Like Us Cymru said:

“Often proper debate is stifled by inaccurate commentary. Evidence in the majority of countries that have a system of Soft Opt Out shows clear progress with improved organ transplantation rates.”

In Wales, one person dies every week whilst waiting for an organ transplant.

For more information visit www.optforlife.org

In response to comments made by the Archbishop of Wales, Barry Morgan today, Roy J Thomas said:

“We are disappointed with the remarks made by the Archbishop in his Presidential Address to the Governing Body of the Church in Wales today and we have received immediate responses from patients across Wales condemning the views of the Archbishop. We challenge him to a public debate on the issue.”

Responding to the comments made in the media today by the Archbishop of Wales, Dr Barry Morgan, against proposals by the Welsh Government to introduce legislation for opt out donor organ legislation, Delyth Lloyd, Policy and Advocacy Manager at British Heart Foundation (BHF) Cymru said:

“Heart transplants offer the best chance of long term survival for many critically ill heart patients and the  British Heart Foundation (BHF) Cymru supports measures to improve the number of transplantations across the UK.  There are currently more than 10,000 people across the UK waiting for a transplant organ.  Sadly around three people on the waiting list die every day because of the severe shortage. Despite 90% of the UK public supporting organ donation less than a third of people are on the organ donor register.

“An opt out system would not take away the right of the individual to decide whether they wish to donate or not.  If a person does not want to donate their organs for transplant, then they have the right to automatically take themselves off the register. And close relatives would always have the final say.”

“We believe a soft opt out system, such as the one proposed by the Welsh Government, where it was assumed that you were happy to donate organs unless you or your family expressly otherwise, will go a long way to improve the availability of donor organs.”

Patients and carers from all parts of Wales have also voiced their concerns regarding the Archbishops statement:

John Owen, Welsh Kidney Patients Association member from Swansea said:

“Opt Out is just the opposite of Opt In. Instead of people opting to sign on the organ donor register, they opt out of donating their organs. It does not interfere with their human rights at all. The Church simply cannot say that it is speaking for its members. There are probably many Church in Wales members who are in favour of the introduction of the soft opt out law.”

He added: “The Welsh Kidney Patients Association has over 2000 members and, at a vote at its AGM some 4 years ago, it voted to support BMA Cymru’s call to introduce a system of “soft” opt out legislation in Wales. No doubt our 2000 members come from all backgrounds and all creeds”

Lynne Matthews, from Ystrad Mynach who has end-stage renal failure and is awaiting a life saving transplant said:

“I am a Kidney Patient with very strong religious beliefs. I know that God gave us freedom of choice.  It saddens me that politics / religion gets in the way of people just wanting a second chance at life and to live. They talk about human rights, what about our human rights? The right to a transplant and a better quality of life.”

Annette Woolfall, wife and carer of Andrew Woolfall, a Kidney patient from Pontypool said:

“Maybe the Archbishop of Wales would think differently if he was waiting for an organ transplant and had to have dialysis 3 times a week for hours on end”

Suzanne Hardy, from Aberavon, who received a transplant in 2010 said:

“Unless you’ve lived with or lost someone from this debilitating disease then how can you possibly make an informed decision?”

Alan Hardy, husband and carer of Suzanne Hardy said:

“The church has a lot of followers and they make decisions on moral grounds. I find it highly immoral and inhumane to allow the suffering of thousands of people who really don’t need to be suffering”

Beth Evans, a family member of a transplant recipient said:

“A fundamental Human Right – a right to life; that could be balanced with a right to free choice but if people don’t choose to opt out it cancels that one out anyway!”

Emma Smith, a transplant recipient from Pontypool said:

“How very unchristian of the Archbishop of the Church in Wales. I wonder however, would he oppose the Opt Out system if he or a close relative needed a kidney transplant or any other transplant to save their life. I think the Church in Wales should not involve themselves in something as sensitive as this. I think the Archbishop would benefit from meeting patients who are on the transplant list and have been for many years to get a feel of what it is like to have to wait for a donor to give the gift of life.”

She added: “Having had a successful transplant 22 years ago, everyday I feel blessed that my donor family found strength from within not only to deal with their son’s death but to consent for his organs to be used in transplantation. Every day I say a little thank you for each day I have with their son’s kidney”

Emma Jarvis Bourton, of Rosebush, Pembrokeshire is carer for her husband John who is awaiting a Kidney transplant said:

“I am very disheartened that the Archbishop has chosen these words to describe the Opt Out system. The Archbishop has clearly set out to undermine the efforts of those whose sole intention it is to save lives, and to what good?”

She added: “I think many people are forgetting that the very term Opt Out means that every person will have a choice. By having an opt out system in place it will be the responsibility of every individual to consider their own personal beliefs and to discuss them with their loved ones before making an informed decision regarding organ donation.”

Pledge your support today >

5,000 leaflets will be distributed on the 11th of September at Cardiff 10k.

Welsh TV star, Leni Hatcher, will be amongst the host of celebrities and choirs performing and celebrating the gift of life at the annual Kidney Wales Reflections Concert at St John the Baptist Church, Cardiff.

The concert, which takes place on Wednesday, December 8^th at 7:00pm, is always a highlight in the charity calendar and attracts over 500 people from all over Wales. This year is no different, with three exceptional Cardiff-based choirs leading the singing and festive fun.

Leni Hatcher, who received a kidney transplant 10 years ago and is now a successful TV presenter on S4C said: “I was given the gift of life 10 years ago when I received my kidney transplant. The Kidney Wales and Donate Wales Reflections concert gives me and other patients the opportunity to remember and give thanks to the donors and their families for making the life-saving decision to join the Organ Donor Register.”

The evening will feature solo performances by Welsh soprano sensation, Gwawr Edwards and talented young clarinetist, Rhys Taylor.

Choral performances will be led by the inimitable mixed voice choir, Côrdydd who have had a bumper year, as they celebrate their 10^th anniversary having recently recorded a Christmas album with the world-famous Welsh bass-baritone, Bryn Terfel alongside stars such as Rolando Villazon, Kidney Wales supporters Only Men Aloud and even Bing Crosby.

Joining them in the Christmas choral line-up is female choir, Côr Canna who have won numerous competitions in Eisteddfods and music festivals world-wide.

Completing the trio of choirs is Ysgol Pencae School Choir who will be performing songs by John Rutter and Elen Rhys.

The concert will feature readings from well-known celebrities and friends including ITV’s Andrea Benfield along with S4C presenters Leni Hatcher and Mari Grug.

Roy J Thomas, Chairman of Kidney Wales and Donate Wales said: “2010 has been a very successful year for Kidney Wales and the Reflections Concert will be an opportunity to celebrate our achievements over the year. It is an opportunity to give thanks to all the donors who have saved countless lives and an evening of hope for more than 500 patients across Wales who are awaiting life saving transplants.”

Tickets for the Reflections Concert are free by contacting Kidney Wales on 029 2034 3940 or via email: Tristan@kidneywales.com. Donations are welcome at the service.

Roy J Thomas Chairman of Kidney Wales who have campaigned on soft opt out for over three years said: “Patients are pleased that the Welsh Assembly Government are aware that they cannot afford to be complacent. We have met the Secretary of State for Wales and impressed on her the wishes of the people of Wales and the patients and carers who are waiting. We asked The Secretary of State to raise this important issue at UK Cabinet level as it is the Government of Wales seeking a competent change in the law from the UK  Government with cross party support here in Wales. We raised the matter with Mr Cameron and Mr Clegg when in Opposition and are awaiting a response now that they are in power. A progressive government would change the law.”

Mr Thomas added “Other progressive countries have made the change and Belgium in particular who changed the law in 1986 have received remarkable results. All our polls and talk shows conducted show that people in our country want a change in the law to ensure more organs are available and avoid the human cruelty of waiting. Politicians have started to put themselves in the shoes of those who are on the waiting list and that is a good step forward.”

Melanie Wager who recently received a kidney transplant in Cardiff said: “I have been fortunate but many are waiting and are in despair. This change gives people hope .Being on dialysis and seeing your body deteriorate is hard but harder for your loved ones as they are literally watching you die. I am no longer in that position. I can only ask the Secretary of State for Wales to move on the legislation and agree with the Government here for all those waiting for organ transplants who I know who are waiting to see progress. The First Minister has pushed hard for this and we know the Leader of the Opposition is also in favour as are the other parties. We now need action not words from politicians who know that changing the law will save lives.”

WRITTEN STATEMENT BY THE

WELSH ASSEMBLY GOVERNMENT

I would like to provide you with an update on progress since the 13^th July 2010, when the First Minister announced the inclusion of the Organ and Tissue Donation LCO in this final legislative programme of this Assembly Government.

As the First Minister said in his statement on 13^th July, this government has held a number of public debates on this issue of organ donation including a formal consultation on options for changes to the organ donation system in Wales. The majority of responses to that consultation supported a change to a soft opt-out system. We are now taking this important issue forward.

This government believes it is important to seek the necessary powers to be able to implement a Welsh system of organ donation that best meets the needs and wishes of the people of Wales.

Legislative competence is being sought to enable legislation to be made to implement the Welsh Assembly Government’s policy to introduce a “soft” Opt out system for donation, for people that live and die in Wales. This will allow for the removal of organs following death unless that individual has registered their objection and where the family of the deceased give their consent. Certain vulnerable groups in society will not be included in the Opt out system. These are likely to include all minors under 18 years of age and adults lacking capacity.

The purpose of this legislation is to increase the number of organs available across the UK, not only to improve the health but also the quality of life of people that need a transplant.

We hope to gain this competence with a view to providing the next Assembly with the opportunity to make new legislation for Wales.

The Assembly could use the new powers to introduce an Opt out system of consent for organ donation. This would be in addition to maintaining the current Opt in system of organ donation, which is operated at a UK level.

I believe passionately that we should do all that we can to limit the number of people that are dying each year while waiting on the transplant list for a suitable donor to become available.

However this is not going to be a quick-fix. Before any “soft” Opt out system is introduced, there will be further engagement with citizens of Wales, customers and stakeholders by way of consultation. Also, after legislation is passed, there will need to be an interim period when a comprehensive Communication Programme will be delivered, to ensure that all Welsh citizens are made aware of its planned introduction, in order to give citizens the opportunity to Opt out if they so wish. We are currently exploring options on how best to address these matters.

Progress to Date on LCO

I am pleased to report that we are making good progress on seeking legislative competence. Since July this year, my officials have worked tirelessly to prepare policy and legal instructions to inform the preparation of the draft Legislative Competence Order (“LCO”). Discussions have also taken place with counterparts in Whitehall, both in the Wales Office and Department for Health and I have been reassured by the cooperative manner in which the Department of Health officials have engaged in this process.

I have written to the Secretary of State for Wales, requesting that she seeks clearance from the Attorney General and then the UK Cabinet in respect of the draft LCO and Explanatory Memorandum.

I am confident that the UK Government, and my colleagues in the Assembly, will do all that they can to expedite the progress of this LCO, whilst at the same time ensuring that we make good legislation for the benefit of all. I look in particular to the Secretary of State for Wales and her officials to help facilitate this.

While we are pursuing legislation to introduce a “soft” Opt out system, we are not standing still, and I have been delighted with the strides being made to increase the number of transplants being carried out under the current Opt in system. It is encouraging to note that Wales has seen a 20% increase in the number of organ donors in the past year and I would like to pay tribute to all those involved, particularly the Welsh Organ Donation Implementation Group (“WODIG”).

However we cannot afford to be complacent. Surveys show that 90% of people claim to support organ donation but only about 30% of the UK’s population are registered on the Organ Donation Register.

If you are one of the 90% in favour of organ and tissue donation, I urge you to do something about it, to speak with your family, let them know your wishes and most importantly to register your wishes on the Organ Donation Register today.

Kidney Wales welcomes figures announced on 4th November by NHSBT Annual Activity Report showing increased organ donation and transplantation rates across the UK for 2009/10. However more needs to be done to end the wait for transplant patients.

The report shows a 5% increase in transplants carried out in the UK last year, but there are 444 people still waiting for an organ transplant in Wales and this is a very conservative figure. We would estimate the real figure is around 850. The introduction of a UK-wide Opt Out organ donation system would save countless more lives.

Roy J Thomas, Chairman of Kidney Wales and Donate Wales said: “A recent study published in The British Medical Journal showed that if Opt Out had been in place in the UK nearly 20,000 lives could have been saved and transformed in the last decade*.

“Wales is leading the way with Opt Out but we need the rest of the UK to follow suit to save more lives.

“The number of patients waiting for transplants continues to increase year on year. Along with an average yearly increase in patients diagnosed with Kidney Disease of 10%, the need continues to outweigh the number of available organs.

“Despite years of campaigning, the number of people on the Organ Donor Register remains low at 28% although we know that over two thirds are willing to donate. Introducing a Soft Opt Out system of Organ Donation would increase the number of available organs by up to 50%”

NOTES:

* BMJ article: S Bird and J Harris Time to move to presumed consent for organ donation. British Medical Journal, BMJ 2010;340:c2188

1. Kidney Wales has campaigned for a number of years to change the law in the UK. Under the favoured

Kidney Wales system of Soft Opt Out Welsh residents are presumed to be organ donors on death unless:

• They have joined an opt out register

• They cannot be identified

• The person’s place of residence cannot be identified

• The wishes of the deceased can be proven to be contrary after relatives have been contacted

• Immediate relatives object

2. Nearly 444 people in Wales are waiting for a transplant, across the UK 10,000 people are.

3. A short Q and A on opt out organ donation is attached with more information available on http://www.optforlife.org

ABOUT THE KIDNEY WALES FOUNDATION

http://www.kidneywales.com

Established in 1967, Kidney Wales has had over forty years of success in supporting and working with kidney patients in Wales. During this time the charity has supported many aspects of kidney patient care in Wales including transplantation, dialysis, research and patient welfare. Kidney Wales played a major role in getting an organ donor card attached to driving licences in the UK and was instrumental in setting up Lifeline Wales – a computer register of people willing to be organ donors in the event of their death.

In 2007 Kidney Wales launched the ‘People Like Us’ campaign, which put renal patients centre stage as they articulated their vision on how Wales could become a world class provider of renal services . With over 444 people waiting for a transplant in Wales, a chronic shortage of organs and increasing demand, People Like Us had three key suggestions for how to save lives:

• delivering a new dedicated transplant unit for Wales;
• working with partners to deliver a substantial increase in donors; and
• introducing legislation in Wales for Soft Opt Out / Presumed Consent.

All three of these objectives have been met with positive responses from the Welsh Assembly Government and National Assembly for Wales.

The Kidney Wales Foundation also organises the organ donation campaign in Wales; working with six other charities and the British Medical Association to encourage more people to join the organ donor register.
http://www.donatewales.org

Statement by Kidney Wales Foundation on  Professor Sir Gordon Duff’s independent review of the error discovered earlier this year in the processing of a number of Organ Donor Register (ODR) registrations, where registrants had registered through the Driver and Vehicle Licensing Agency (DVLA).

Kidney Wales Foundation said today that it was important that the public had confidence in Government data collected particularly in the case of the Organ Donor Register. It called on the UK Government  to agree an Opt Out system for the UK or to give timescales as to when costly recommendations by Sir Gordon Duff will be implemented and for the National Audit Office and the Committee of Public Accounts to ensure that matters are safeguarded for the public and to compare such organ donor systems.

A spokesman for Kidney Wales Foundation said “ We informed NHS BT who regulate the Register about the need to confirm donor’s wishes by writing to them verifying the data on third party forms some two years ago. The recommendations from this Report will now deal with a number of our concerns. This report calls improved control and governance and external organisation to do so. We agree with the Report that ticking boxes should trigger the sending of further information from NHSBT. It is important that Sir Gordon Duff’s recommendations are costed properly and if they are put in place they are done quickly and timescales are given to improve the governance as proposed.”

Sir Gordon Duff said in his report that the longer-term solution would be to enlist the help of experts to create a more secure, interactive system with better data verification and cross reference functions.

Kidney Wales said “ The public should know the timescales of this and the cost and it would be better if the UK Government saved money and introduced an Opt Out System as in other European countries.”

The system  announced in Wales recently is one of soft opt out. This means that people are presumed to want to be organ donors unless they have joined an opt-out register, they cannot be identified, their wishes can be proven to have changed or immediate relatives object. These exemptions are crucial; they mean that only those who want to donate do so. This system is commonplace in other European countries. When Belgium introduced the opt-out system in 1986 its national rate of organ donation rose by 55% within five years. Belgians can take themselves off the register but only 2% have. In Spain, where a similar system exists, there are 35 donors per million compared with just 13 in Wales and 14.9 in the UK as a whole.

Kidney Wales concluded “ It would be far better and more efficient to have an Opt out System in place as with other European countries. It this would obviate the need to comply with such costly recommendations which is prolonging the old system which is clearly out of date.”