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.”

ENDS

For further information and interviews, contact Tristan Williams on 029 2034 3940 / 07590 216 784

NOTES

About Opt For Life

www.optforlife.org

Opt for Life Cymru is an organised group led by Kidney Wales Foundation, People Like Us Cymru and the British Heart Foundation and supported by the BMA, with the objective of changing legislation in Wales to provide more organ donation to patients waiting for a transplant.
Under a 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.

About Kidney Wales Foundation

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 490 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.

About People Like Us Cymru

www.peoplelikeuscymru.org

People Like Us Cymru is a support website for kidney patients and their families across Wales offering advice on renal care as well as a forum for sharing experiences.

Families want a space where they can find easy-to-understand information and somewhere they can share their concerns with others who are going through the same thing.

This website builds on what was achieved during the People Like Us campaign and, like that campaign, it is genuinely patient-led. We want the people who use it to be the ones who inform it.

About British Heart Foundation

The British Heart Foundation is the nation’s heart charity, dedicated to saving lives through pioneering research, patient care, campaigning for change and by providing vital information. But we urgently need help. We rely on donations of time and money to continue our life-saving work. Because together we can beat heart disease.

For more information visit bhf.org.uk/pressoffice
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: