Opt for Life Cymru is an organised group wishing to change legislation in Wales to provide more organ donation to patients waiting for a transplant.

UK ORGAN DONOR TASKFORCE TARGETS TO BE MISSED – OPT OUT NEEDED AS A SOLUTION FOR THE UK

“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.”

Church leader supports Opt-Out donation

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.

Download the OPT FOR LIFE SUPPORTERS PACK

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

Press Statement on Welsh Government White Paper On Opt Out

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

LAUNCH OF OPT FOR LIFE CYMRU

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.

Continue reading »

RUNNING FOR LIFE

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

KIDNEY PATIENTS TO JOIN CHOIRS, SOLOISTS AND CELEBRITIES AT REFLECTIONS CONCERT

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, Continue reading »

KIDNEY WALES RESPONSE TO WRITTEN STATEMENT BY WELSH ASSEMBLY GOVERNMENT ON ORGAN AND TISSUE DONATION LEGISLATIVE COMPETENCE ORDER, 17 NOVEMBER 2010

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 Continue reading »

OPT OUT SYSTEM WOULD FURTHER INCREASE DONATION AND TRANSPLANTATION RATES – KIDNEY WALES RESPONSE TO NHSBT REPORT

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 Continue reading »

UK should now decide on Opt Out or spend more on the Current System – but how much?

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 Continue reading »