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Debate on Final stages Tuesday 2 of July 2013 National Assembly For Wales

Posted on July 3rd, 2013 in Uncategorized

Debate on Final stages Tuesday 2 of July 2013 National Assembly For Wales
HUMAN TRANSPLANTATION (WALES) BILL

Kidney Wales Foundation dedicated the vote in favour of the Human Transplant (Wales) Bill in the Senedd today to all those waiting for an organ transplant.

Roy J. Thomas Chief Executive of Kidney Wales Foundation said “The new law gives hope for all those waiting for a transplant in Wales and will gladden the hearts of those in the UK who see this as a sign that other parts of the UK may follow this vote. This law when introduced in 2015 will have a positive effect on organ donation rates of some 25%-35% higher on average in presumed consent countries. In opting for this law Assembly Members have created history by opting for life.”

Mr Thomas stated “If you understand organ donation, you understand the importance of this law being passed today.”

He added “It was a good debate and the scrutiny of the Bill has been first class throughout. The consultation stages have made it good law. Credit must go to the number of people who have worked on this law from patients, volunteers in the first instance over some five years ago and charities the British Heart Foundation, British Lung Foundation, Welsh Kidney Patients Association, Diabetes Cymru , Cystic Fibrosis and also supporters of longstanding the British Medical Association.”

Mr Thomas paid tribute to all the Party Leaders who supported the legislation and Welsh Government. He said “ There was cross party support to the Bill and some votes went astray. We must work on those who failed to understand this legislation to support organ donation.”

One person dies every week in Wales waiting for an organ transplant. Three people die a day in the UK.

He added “Christian churches and faith groups all over the world support the system that we propose to implement here in Wales. Spain, France, Austria, Netherlands and Belgium and so do a vast majority of faith groups and Christians in Wales . “

HUMAN TRANSPLANTATION (WALES) BILL Debate on Final Stages 2nd July

Posted on July 1st, 2013 in Uncategorized

 

PROGRESSIVE LAW ON ORGAN DONATION

 

Debate on Final stages Tuesday 2 of July 2013 National Assembly For Wales

HUMAN TRANSPLANTATION (WALES) BILL

 

 

The leading campaigning charity in Wales on organ donation, Kidney Wales Foundation, has campaigned for 5 years for a change in the law on organ donation. The Charity’s vision of changing the law is being realised. The final debate will take place in the Assembly on 2 of July.

 

Roy J Thomas, Chief Executive of Kidney Wales said “The UK is one of the lowest donor rate countries in Europe. The new HUMAN TRANSPLANTATION (WALES) BILL is new progressive law. We are proud to have led the debate in favour of this law.  “

 

Mr Thomas added “The Welsh Government has seen this Bill scrutinised properly and several detailed consultations have been undertaken with the Welsh public. Wales has been at the forefront of organ donation with development of the Organ Donor Register in the 1980’s 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.”

 

  • All Welsh residents will be able to register their personal wishes regarding organ donation.
  • As now, you may register as a donor or Opt-in.
  • You may also register as a non-donor or Opt-out, this is new.
  • But if you do not opt-in, or opt-out, i.e. if you do nothing, you will have deemed to consent to organ donation.

 

Deemed consent donation will not go ahead in the absence of any family member. Kidney Wales believe the presence of the family is essential – both as a source of necessary information about the potential donor and in order to ensure that donation does not go ahead in the face of the deceased’s known objection to organ donation.

 

Melanie Wager who received her kidney in July 2010 said “Waiting for an organ is an extremely difficult time for anyone- it is like being on death row and it seems as if you are being further punished for being ill. Mentally, it is cruel for the patient and the caring family.”

 

Gaynor Taylor whose son Richard Taylor, died in 2004 aged 23 years and has been in the position as a donating family and decided  to work on the campaign with Kidney Wales said” It is a difficult time for the Family and the burden will be more with doctors. For this reason plus the distress it causes, I have been working closely with Kidney Wales for the Soft Opt Out System for Organ Donation. It allows a clear statement of the law. I believe it will help families during this difficult time. I know because my late husband and I faced this decision. If anyone does not want to donate they can Opt Out. ”

 

Roy J Thomas stated “This consent law has had a positive and sizeable effect on organ donation rates of some 25%-35% higher on average in deemed consent countries. 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.”

 

 

EDITORS NOTES

 

The Facts

 

•             One person dies every week in Wales waiting for an organ transplant. Three people die a day in the UK. The current system has failed those waiting.

 

•             You are more likely to need an organ than to donate one.

 

•             The new deemed consent system in Wales needs to be given stewardship and trusted to the medical profession. The Human Tissue act is there to oversee matters with a new Code of Practice for doctors.

 

•             The new law in Wales is within European Human Rights legislation.

 

•             The Organ Donor System in the UK needs reform and is outdated.

 

The State

 

Those who oppose this law state that this new system says it redefines the relationship of the individual and the state – this is exaggerated.

 

There are protections of the State on death. Any person aware of a dead body lying in the district of a coroner has a duty to report it to the coroner; failure to do so is an offence.

 

It is the Coroner on behalf of the State, not the family, who decides if an autopsy takes place.  The Coroner can also order the keeping of tissue samples.  It is also the Coroner that decides if the body can be released to the family, and the state places strict laws on the family regarding how, where and when they can dispose of the body.

 

So it is clear that the new proposed system does not redefine the relationship of the individual and the state. The coroner’s jurisdiction determines who the deceased was and how, when and where they came by their death. When the death is suspected to have been either sudden with unknown cause, violent, or unnatural, the coroner decides whether to hold a post-mortem examination and, if necessary, an inquest. The role of the Coroner / State in regards to the dead goes back to 1194 and was further clarified in Chapter 24 of Magna Carta in 1215.  Admittedly it took a little longer to happen in Wales, 1284 to be exact.

 

Human Rights

 

Some have said that the proposed new system is a blatant attack on the human rights of the dead or dying, but it is the exact opposite. If someone is against organ donation, as it stands now, their family could go against their wishes and donate their organs, registered or not.  In the new system, they can opt-out and their family will never be approached.  The new system protects and extends human rights.

 

The human rights of the dead or dying are also extended in another profound way. As it stands now, families are asked whether they are happy for donation to take place, however, the new systems requires the family to represent the views of the person, who could donate through deemed consent. This is very different, and extends the human rights of the person over the present system.

 

 

The Evidence of Progress

 

Leading journals found that this consent law has had a positive and sizeable effect on organ donation rates of some 25%-35% higher on average in deemed consent countries. The evidence of Abadie and Gay of Harvard and Chicago Universities (2005) who conducted a study to examine this across 22 countries who have introduced presumed consent systems over a 10 year period. The study found that presumed consent had a positive and sizeable effect on organ donation rates of some 25%-35% higher on average in presumed consent countries. A number of countries have dramatically increased their donation rates following the introduction of soft opt out systems of organ donation.

 

Belgium

 

In Belgium, after 2 years of passionate and sometimes emotional discussions, widely publicised, the presumed-consent transplantation law was voted through in the Senate and in the House of Representatives by a large majority from all political parties in Belgium in 1986. Belgium saw a 55% increase in donation rates over 5 years. In Belgium:

1.            The law is obviously accepted by most people and its application is no longer a matter of controversy. Less than 2% of the population have registered an objection to organ donation.

2.            After the implementation of the transplant law in 1986, the kidney retrieval rate rose in 1987-1988 by 86% to 37.4 per million population per year. This increase in cadaveric donations was sustained.

3.            Until 1986 work with teaching hospitals this had only limited results. After 1986 the number of collaborating hospitals with donor activities increased.

 

Belgium, for example, which offers a model which can most easily be compared to Wales and the UK, went from 18.9 per million population to 41.3pmp three years after the introduction of opt out legislation.  Countries which have introduced other forms of presumed consent have also seen major changes.  Austria went from 4.6 pmp to 27.2pmp after five years of presumed consent and Singapore from 4.7pmp to 31.3pmp three years after its introduction.

 

It is the donor’s views which are paramount and which have to be respected

 

  • No family, no donation.
  • It allows the doctor to take the view – currently it is placed on the family, if unknown.

 

History and Change

 

The first human organ transplant occurred on June 17, 1950, at the Little Company of Mary Hospital in Evergreen Park, Illinois. The suburban Chicago hospital, better known as the “baby hospital” for the high number of births there each year, was an unlikely place for this landmark in medical history. And the doctors who took part in the transplant tried to keep the highly experimental procedure quiet. The subject was Ruth Tucker a 44-year-old woman who suffered from polycystic kidney disease. She received a donor organ, a kidney, from a deceased person, making the procedure even more controversial for the Catholic hospital. At the time, the church was opposed to the idea that tissue could be taken from a dead person and put into a living person, and that the tissue would then come to life again. But the three doctors who performed the procedure had the confidence and trust of the sisters running the hospital.

 

Word leaked about the operation, and several days after the procedure, when the patient was doing well, the hospital and doctors went public with their breakthrough, making headlines around the world. The transplanted kidney functioned in the patient for about six weeks-enough time for her other kidney to begin working again it was a breakthrough and a success.

 

Christian churches all over the world support the system that we propose to implement here in Wales. Spain, France, Austria, Netherlands and, as mentioned, Belgium.

 

 

 

Statement by Kidney Wales on Bill and Vote in favour in Assembly

Posted on April 17th, 2013 in Uncategorized

The Human Transplantation (Wales) Bill 

Statement by Kidney Wales on Bill and Vote in favour in Assembly

 

  Call To Form New Implementation Group

Kidney Wales Foundation supports the Assembly Members and Welsh Government and the diligent scrutiny of the new Organ Donation Bill known as The Human Transplantation (Wales) Bill today.

In welcoming the overall vote in favour for the new Organ Donation Bill, Roy J Thomas of Kidney Wales stated that the Welsh Government should work with and form a new Organ Donation Transplant Implementation Group which would have a new communications role.

He said “It is clear that existing system on organ donation in the UK is not working. Welsh Government is taking on board the views of everyone in implementing new legislation in Wales for “deemed consent.  It is a task which requires everyone to play a part in saving lives.”

He added “There are clearly concerns but the principle of saving lives is the essence of this cultural shift .The Government needs to work with a wider partnership to deliver a substantial increase in donors and this would be a further progressive step forward. Governments are not always best placed to bring consensus due to political allegiances. However, those against the Bill seem to have not taken on board all the evidence and matters can be improved.”

Kidney Wales Foundation gave examples such as:

  • Delivering a new dedicated transplant infrastructure for Wales and promoting organ donation coordinators and their work;
  • Consulting persons of 16 and older in schools and colleges and working with students in Universities and Colleges;
  • Promoting the role of the family in discussing organ donation by communication and campaigns; and a
  •  meaningful discussions with BME Groups and seeking case studies of donor and recipient families in all cases.

 

NOTES

In the early years Kidney Wales pointed to the evidence of Abadie and Gay of Harvard and Chicago Universities (2005) who conducted a study to examine this across 22 countries who have introduced presumed consent systems over a 10 year period. The study found that presumed consent had a positive and sizeable effect on organ donation rates of some 25%-35% higher on average in presumed consent countries.

A number of countries have dramatically increased their donation rates following the introduction of soft opt out systems of organ donation.  Belgium, for example, which offers a model which can most easily be compared to Wales and the UK, went from 18.9 per million population to 41.3pmp three years after the introduction of opt out legislation.  Countries which have introduced ‘’hard’ forms of presumed consent have also seen major changes.  Austria went from 4.6 pmp to 27.2pmp after five years of presumed consent and Singapore from 4.7pmp to 31.3pmp three years after its introduction.

Motion to agree the general principles of the Human Transplantation (Wales) Bill, 16 April 2013

Posted on April 17th, 2013 in Uncategorized

Motion to agree the general principles of the Human Transplantation (Wales) Bill, 16 April 2013

NDM5199 Mark Drakeford (Cardiff West)

To propose that the National Assembly for Wales in accordance with Standing Order 26.11:

Agrees to the general principles of the Human Transplantation (Wales) Bill

The Human Transplantation (Wales) Bill and Explanatory Memorandum were laid before the Assembly on 3 December 2012.

The report of Health and Social Care Committee on the Human Transplantation (Wales) Bill was laid before the Assembly on 25 March 2013.

 

 

The Minister for Health and Social Services opened the debate and noted that deemed consent would move to an ‘opt in’ structure and that two members of the Committee could not agree with this on principle and that he respected their position but could not agree with this standpoint. He added that ‘three equally valued choices’ would be made available to the public –opting in, opting out or have deemed consent by ‘taking no action’.

The Minister stated that three avoidable deaths happened every month in Wales but did not believe that deemed consent would address this issue wholly but believed that as a package it would bring about ‘a cultural shift’ and ensure Welsh citizens communicated their opinions with each other.

The Minister noted that there was a large number of recommendations from the Health and Social Care Committees and noted that the Welsh Government would bring forward in Stage 2 an amendment that stated that novel forms of transplantation would not be part of deemed consent and also that if an appointed representative was unable to be contacted that the decision would be made by the family. He also added that people such as prisoners who weren’t in Wales out of choice would not be subjected to deemed consent and that this would be addressed in the code of practice.

The Minister stated that the role of the family was a contentious factor during the consultation period and noted that deemed consent donation would not go ahead in the absence of family members and this position would be reinforced on the face of the Bill and the Government would bring forward an amendment in Stage 2  to strengthen the position of the family and that the situation in practice and in law had to be ‘aligned to one another.’ He added that the donors view was ‘paramount and had to be respected’ and family members had to show that they were against donation.

The Minister noted that the position of students from outside of the country, living in Wales was protected by two family safeguards – that they had to have a family member present and also family members could rebut donation.

 

The Minister stated that he wanted to hold further rounds of discussion between faith groups and clinicians to ensure that the role of the family was clear.

The Minister stressed that an appointed representative could overrule the family and if an individual was anxious that the family would not represent their views effectively an appointed representative could be placed on the organ donation register.

The Minister noted that the Government had to inform the public effectively of the deemed consent system in order to conform to the Human Rights Act and the communication campaign was paramount with regards to this and had to reach groups that weren’t usually engaged in public awareness campaigns.

Vaughan Gething AM on behalf of the Health and Social Care Committee noted that surveys had shown support to deemed consent but that the committee had received more written evidence against deemed consent than in favour. He stressed that a communications campaign was imperative to educate the public.

Vaughan Gething AM noted that two members of the committee were against deemed consent, while other members were in favour. He added that ‘on its own the Bill’ would not drive up organ donation but that international studies had shown that as part of a ‘package’ it could lead to an increase.

Vaughan Gething AM noted that there was a consequence for critical care capacity, even with a moderate increase of donor numbers and believed that the Minister should prepare a detailed plan on the future of critical care in Wales before the end of Stage 1 and was looking forward to hearing more from the Minister.

 

Vaughan Gething AM stated that further information and clarity was needed on the role of friends and family and a ‘clear and consistent picture was not delivered to date’ and that there was at present a difference between what was in law and what was happening in practice but was interested in what the Minister had to say on the matter.

 

Vaughan Gething AM noted that appointed representatives were important, especially if individuals disagreed with family members and was glad that the Minister would ensure that names of appointed representatives would be recorded on the organ donation register.

Vaughan Gething AM stated that the Committee believed that some residents were not here voluntarily and was glad what the Minister had said that deemed consent would not apply for prisoners but asked the Minister to consider members of the armed forces also. He also added that he was glad that the Minister would consider the situation of overseas students.

Vaughan Gething AM noted that the committee believed that an update on the position of a single register across the UK was necessary as this was dependent on other administrations in the UK and also asked about the cost implications of this.

 

Vaughan Gething AM asked about the communication and educational campaign and that it was important that the public were made aware of deemed consent and that individuals had to be fully aware under the Human Rights Act and would any government be able to meet this but was glad that the Minister would address this. He also added that they ‘remained to be convinced’ if the resources were adequate and was glad that the Minister would look into this.

 

Vaughan Gething AM welcomed that a draft copy of the code of practice would be shared with committee members before the end of Stage 2.

Vaughan Gething AM believed that a robust evaluation strategy should be put in place as there would be immense interest in what happened in Wales and wanted the Minister to state what he believed success would look like.

The Chair of Constitutional and Legislative Affairs Committee noted that all good legislation should seek the highest levels of clarity and believed that the Bill as currently drafted should be ‘clearer’ as it was of immense public importance.

David Melding AM stated that clarity had to be sought with regards to the ranking of family members and how would the Bill complement and develop existing legislation when it came to this matter.

David Melding AM believed that communication was important to ensure the success of the Bill and believed that a duty should be on the face of the Bill that appropriate provision was made to ensure effective communication.

David Melding AM noted that the issue of novel transplants had to be addressed on the face of the Bill and not in a code of practice or in regulations. He also added that there had to be greater use of the super affirmative when it came to scrutinizing secondary legislation that may derive from the Bill to ensure maximum public and legislative scrutiny.

Darren Millar AM stated that this was an ‘emotive’ issue and that three people per month died in Wales while waiting for an organ and therefore better campaigning had to be made on the issue. However he stated that there would be a free vote on the Conservative benches. He added that the evidence was unclear that deemed consent would lead to a higher rate of organs donated and that the high rates in Spain was as a result of effective campaigns and not because of deemed consent.

 

Darren Millar AM was pleased that there would be better alignment of the role of the family in practice and in the Bill. He added that it was important to address the ranked list of family members and friends.

 

Darren Millar AM was glad that the Minister clarified the position of prisoners and overseas students and asked him to clarify the issue of the armed forces. He also asked that the Minister to increase the period of residency in Wales in order for deemed consent to apply from six months to twelve months, especially given that a communication campaign would be an annual occurrence.

 

Darren Millar AM spoke of his concerns at the lack of capacity in critical care. He also added that the budget set aside for a communication campaign was ‘insufficient’ and was looking forward to hearing more from the Minister on these two issues.

Mick Antoniw AM stated that the scrutiny of the legislation had been ‘very effective’ and had led to a number of ‘government concessions’ that would lead to better legislation. He believed that as part of a package of reforms this legislation could lead to an increased number of organs donated and that international research ‘backed’ this position.

Elin Jones AM noted that she was glad that there would be further clarification when it came to which organs would come under deemed consent and believed that novel transplantations should be exempted from this legislation and was looking forward to seeing the wording of the government amendment.

 

Elin Jones AM spoke of her concern at the lack of critical care capacity and called on the Government to publish a detailed plan on critical care and was glad that the Minister had agreed to this point. The Member also spoke of the position of students from outside Wales and stated that the Minister had said that students would be ‘safeguarded by a family veto’ on the face of the Bill but was concerned what would happen if families members could not agree with each other and what would happen in that position and if there should be ranked list of family members.

 

Elin Jones AM stated that Plaid Cymru would have a free vote on the matter. (The microphone was cut off by the Presiding Officer.)

Kirsty Williams AM noted that it was important to have clarity when it came to the role of the family and a great deal of confusion was caused by discrepancies made by the former Minister and added that she was glad that the new Minister had offered better clarity but that he admitted that further discussion was needed to ensure that this matter did not cause any confusion.

Kirsty Williams AM believed that potential donors were already being lost because of the capacity of critical beds and this had to be addressed otherwise the legislation would not be of any value.

Kirsty Williams AM stated that ‘nobody was convinced’ that the recourses allocated to the communication campaign was adequate. She added that the Welsh Liberal Democrats would support the legislation going forward.

Angela Burns AM noted she would ‘vote with he conscious’ and she was ‘instinctively against the idea of the state having sovereignty over her body’ but on the other hand people were dying as a result of the lack of organs available. She added that she would vote in favour of this in order that the discussion moved forward to Stage 2.

Angela Burns AM asked the Minister to ensure that the people of Wales knew what this legislation meant and spoke of the difficulty of ensuring this was done effectively. Angela Burns AM asked what organs would be donated under this legislation and also spoke of cross-border difficulties.

 

Simon Thomas AM stated that he was going to abstain but believed that what the Minister had said during the debate had given him further confidence. He added that he wasn’t against deemed consent but he wanted to ensure that this would not lead to a decrease in organs donated and wanted clarification when it came to the capacity of critical beds and would not want ‘to legislate for the sake of legislating.’

Simon Thomas AM noted that the Bill had ensured people were discussing the matter but more had to be done to ensure that services would support the legislation and that there would be an adequate communications campaign. He noted that he would abstain but hoped that he would be able to support the Bill in the future when amended.

Suzy Davies AM said that she was torn on the issue and ‘could be swayed’ by the debate. She added that it would be impossible to reach everyone in Wales but queried whether it was possible to deem consent by some who weren’t aware of the legislation.

 

Jocelyn Davies AM noted that she wanted to support the legislation but was unable too. She was pleased that novel transplantations would be exempted but did not believe that the Minister would be able to address her fundamental fears. She added that she decided to became a donor and had been on the register since 1985, but it was her decision and there was ‘nothing more precious that autonomy.’ The Member said that she would abstain and wanted to see other ways to increase the organs donated in Wales.

Byron Davies AM believed that the family had to have the final say and that this would reflect the cultural values of Wales. He added that the Bill before the Assembly did not make provision for this and therefore could be seen as a ‘hard opt out’.

Byron Davies AM was concerned that there had been a decrease in organ donation rates of 22% during the period of discussing the Bill. He believed that this legislation ‘should be put on hold’ but if it went forward it had to introduce an ‘unambiguously a soft opt out system.’

Russell George AM stated that he wished to see an increase of organs donated in Wales but was against the idea of deemed consent for organ donation and that the ‘vast sways of the country’ were unconvinced that legislation was the way forward. He added that Kidney Foundation Wales noted that the good will of the people of Wales was imperative to the success of the legislation but was concerned that any good will would fade away through legislation.

Russell George AM also spoke of his concern that there had been a decrease in organ donation rates during the period of discussing the Bill and believed that this was a ‘backlash’ of the government’s proposals.

Russell George AM said if the Bill would increase donors and save lives he would support it but he was still very unconvinced with this argument.

The Minister for Health and Social Services responded to the debate and noted that Wales would remain part of the organ donor system across the UK by staying close to the Human Tissue Act of 2004.

The Minister said that this was a debate on the nature of consent and would not want to react to the opinions of members such as Jocelyn Davies AM during the current debate. He added that he was heartened that a number of witnesses to the committee agreed with the principle of deemed consent.

The Minister stated that the fall in the rate of organs donated in the last year was as a result of the number of people who could be donors declining in that specific period and this was good news and had nothing to do with the deemed consent argument.

The Minister said that in relation to Darren Millar AM the armed forces would be covered by the same principles as prisoners.

 

The Minister stated that following Stage 1 the Bill would be clearer and clarification would be ensured on a number of issues and that the Bill would lead to a cultural shift in Wales.

 

 

Motion agreed – 41 in favour, 5 abstentions, 9 against

 

Supporting Documents:

The Human Transplantation (Wales) Bill

Explanatory Memorandum

Health and Social Care Committee report

Constitutional and Legislative Affairs Committee Report

 

 

 

Motion to approve the Financial Resolution of the Human Transplantation (Wales) Bill, 16 April 2013

 

View the background to item 12.

NDM5200 Lesley Griffiths (Wrexham)

 

To propose that the National Assembly for Wales, for the purposes of any provisions resulting from the Human Transplantation (Wales) Bill, agrees to any increase in expenditure of a kind referred to in Standing Order 26.69, arising in consequence of the Bill.

 

The Minister for Health and Social Services moved this motion.

Motion agreed – 41 in favour, 4 abstentions, 10 against*

 

*Please note that Gwyn Price AM had indicated at the end of plenary proceedings that he had made a mistake while voting.

 

A full transcript will be available here

Press Statement

Posted on April 2nd, 2013 in Uncategorized
Press Statement on Health Committee and Legislative Committees reports on Human Transplantation (Wales) Bill

Better Communication with the public and more joined up thinking needed in the Bay

In responding to the release of the Health and Social Committee and the Constitutional Legislative Affairs Committee Roy J Thomas of Kidney Wales said “ From reading the reports it is clear that better communication with the public and more joined up thinking is needed in the Bay. We expect scrutiny of this important Bill and we will go through the conclusions and evidence of both Committees in detail. It is important that the public has confidence in the legislative process and the debate around the drafting and the principles and how it operates.

He added “We continue to believe that countries have deemed consent save more lives than those who do not have this system. Nothing in the evidence or conclusions have jumped out at us to say that this is bad law. It will change the culture in the UK and it needs changing as patients on the transplant waiting list are in desperate need.”

Mr Thomas looked at other countries, “Examining the Human Transplantation (Wales) Bill has been a matter which the Assembly Government should take in their stride. It should look at other countries such as Belgium for guidance. This is not reinventing the wheel. “

Kidney Wales are pleased that the Health Committee agreed, by a clear majority, that it should proceed to the next stage of the legislative process and agree with that outcome.

Kidney Wales believes that the principle objective of the Bill is not only the need to increase the number of organ transplantations in Wales and to save more lives – but is to change the culture and encourage people to think of others.

“You are more likely to need a transplant than provide an organ.” said Melanie Wager a patient advocate at the Charity.

Mr Thomas added “The Health Committee, today urged the Welsh Government to set out its position in a clear and consistent manner from this point forward. We too are keen to see implementation undertaken properly. We too also want clarity on how the Government will positively communicate with the public from now on. “

“In our evidence we stated that the Welsh Government should look again at its proposals for a Wales-wide publicity programme to inform the public about how the Bill will affect them. We note that the Health Committee remained to be convinced that the one detailed is sufficient to meet the Government’s own aspirations. We call on Government to work with the third sector on this as in the Donate Wales Campaign which was a success and funded by Government and involved several charities and the BMA.”

An extra 15 people a year could donate their organs

Posted on October 17th, 2012 in Uncategorized

AN EXTRA 15 people a year could donate their organs after death if Wales becomes the first part of the UK to move to an opt-out system, it has been claimed. 

Welsh Government officials believe creating just one extra organ donor would pay for the projected pounds 5m cost of switching to opt-out organ donation

The draft Human Transplantation (Wales) Bill, which was published yesterday, proposes replacing the current opt-in organ donation system with an opt-out process. 

If the Bill is passed, Wales will become the first part of the UK to change the organ donation system. 

Half of the projected cost – pounds 5m between now and 2016-17 – will be spent on a publicity and education campaign explaining how the new system will work. 

Christian groups, including the Church in Wales, have questioned whether a change to opt-out will increase the number of donors and charity Care warned such a move takes “Wales down a dangerous path”. 

Launching the draft Bill, which will be subject to another period of public consultation, Health Minister Lesley Griffiths said: “We are seeking a change in the law to increase the number of organ and tissue donors and to save lives. 

“One donor can improve or save the lives of up to nine other people by donating their organs and many more through the donation of their tissues. 

“Wales has seen a 49% increase in donation rates since 2008, which is a huge achievement to be proud of. 

“However, there is still a shortage of organs for transplant. 

In 2011-12, sadly 37 people in Wales died while waiting for an organ. 

“I believe the time has come to introduce a change in the law, together with an extensive communication and education programme encouraging people to make a decision and to ensure their families know their wishes.” 

The draft Bill proposes creating a single register, which will record the names of those people, over the age of 18 and who have lived in Wales for six months, who want to opt in to donation – to be known as express consent – and those who want to opt out from the process altogether. 

Those people who do neither will be deemed to have given their consent and made a positive decision to donate their organs and tissues. 

Families will have no legal right to veto donation but, as now, donation will not go ahead if they are strongly opposed to it. 

Currently, it is estimated around 40% of families refuse permission to donate organs for transplant when approached. Evidence from other countries which also have opt-out, suggest that figure will fall to 10%. In a written statement to AMs, Mrs Griffiths said: “It will be treated as a wish of the deceased to be a donor and a decision which families will be sensitively encouraged to accept.” 

It is expected such a change in the law will increase the number of organ donors by around 25% – about 15 donors. 

This would equate to some 45 extra organs available for transplant. 

The latest figures show 67 people from Wales donated their organs after their death last year. 

These organs would be available to people on the UK transplant waiting list and would be allocated on the basis of compatibility and clinical need. Roy J Thomas, chairman of Kidney Wales Foundation, said: “The Welsh people see this as an important measure and so have leading politicians cross all political divides. 

“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 change we get more lives saved.” 

And Elin Jones, Plaid Cymru’s health spokeswoman, said: “Moving to an opt-out system will ensure the number of people who donate increases and a number of lives are no longer needlessly lost. 

“The system doesn’t take the right of the individual to decide – if a person does not want to donate their organs they can simply opt out. In the 22 countries that currently operate a system of presumed consent, the evidence shows that donor rates are around 25% to 35% higher than in Wales. 

“Far too many families in Wales are watching a brother, sister, mother or father waiting for a life-saving transplant, when the answer is staring us in the face. We need more organ donors and presumed consent is proven to work.” 

A final Human Transplantation (Wales) Bill is expected later this year following the public consultation, which runs until September. If passed, it is expected the new opt-out system will be introduced in 2015. An earlier public consultation on plans to move to opt out was largely supportive of the idea, but there remains opposition to such a change. 

But there are concerns about the ethics of presumed consent and whether NHS Wales has the infrastructure to deal with an increase in organs for transplant – only kidney and pancreas transplants are carried out in Wales. 

Dr Tony Calland, chairman of the British Medical Association’s medical ethics committee, said: “We’re very pleased the Welsh Government has published this ground-breaking legislation and we are supportive of moving to opt-out. 

“It will increase the number of available organs for people who desperately need them in Wales.” 

TIMELINE: WHAT HAPPENS NEXT? JUNE 2012: The draft Human Transplantation (Wales) Bill is published outlining the move to opt-out SEPTEMBER 2012: The public consultation on the draft Bill closes END OF 2012: The final Human Transplantation (Wales) Bill is published 2013: The Bill will be debated and scrutinised at the National Assembly 2013-14: If passed, a pounds 2.5m publicity and education campaign will be launched to explain how the new system will work 2015: The new opt-out system for organ donation will be introduced in Wales THE OPPOSITION: ‘ILL-JUDGED IDEA WILL UNDERMINE DONATION’ THE Church has been at the heart of opposition to moves to introduce opt-out in Wales. 

The Church in Wales, Catholic Church and the Wales Eastern Orthodox Mission were united in opposing the draft plans, describing them as “ill-judged”. 

And in a joint statement in January, they said a move to opt-out could undermine the positive image of organ donation and Wales’ reputation. 

Responding to the draft Bill published yesterday, a statement from the Bishops of the Church in Wales, said: “Organ donation is a way of expressing solidarity with our fellow human beings, and sharing with them the gift of life, even after our own death. 

“Signing up to the organ donor register is something all Christians should be encouraged to do. But like any other altruistic gift, organ and tissue donation should be freely given, not assumed. We are pleased the Welsh Government has taken note of the responses made to the first stage of the consultation process. There is now much more clarity about the system, especially about recognising the importance of the involvement of families at the time of donation. 

“However, the system that will have to be introduced to ensure potential donors fulfil all the necessary criteria – residence, age, mental capacity, evidence of wishes – will be complicated. It would be better to invest resources in wide-reaching public awareness campaigns to encourage more people to become voluntary donors. 

“Evidence any system of ‘automatic’ donation increases the supply of organs – whether it’s called ‘presumed’ consent, ‘deemed’ consent, or ‘opt-out’ – is still disputable.” 

Meanwhile, the Christian charity Care, said the draft Bill is “taking Wales down a dangerous path” and it also believes it is unlikely it will increase the number of organ donors. 

Dr Dan Boucher, the charity’s policy officer in Wales, said: “Although the Welsh Government’s heart is in the right place, the policy is not. A system of presumed consent is highly concerning both in terms of its ethics and efficacy. Care will be responding to the Welsh Government’s consultation and urging it to reconsider its proposals.” 

Welsh Conservative AMs will be given a free vote on the Bill when it reaches the Senedd, after Shadow Health Minister Darren Millar questioned whether changing the law really is a “silver bullet“. 

He added: “Organ donation is an emotive subject and it’s important to examine both the clinical evidence for and against the Welsh Government’s proposed approach and to listen to the views of the Welsh public during the coming weeks. 

“It remains a fact some countries operating presumed consent systems have lower rates of organ donation so legislation should not be seen as a silver bullet to improving donation rates.” 

Stuart Davies, 45, from Bancffosfelen, in Carmarthenshire, received his first donor kidney in 1992 and a second in 2003. 

He has represented Great Britain in two World Transplant Games; and Cardiff in nine British Transplant Games, bringing home a total of 43 medals. 

He also won the Victor Laudorum award for the best male adult athlete for three consecutive years. 

Stuart said: “I’m in favour of the proposed legislation as I feel it will make more organs available for transplantation. 

“Having spent almost a quarter of my life on dialysis, I know only too well the desperate, bleak and uncertain feeling of waiting for an organ. I also saw several of my fellow dialysis patients die waiting for a transplant. Having a transplant has given me my life back and enabled me to be a proper husband to my wife, and father to our daughters. 

“In my opinion, if you are willing to accept an organ should you need one then, in turn, you should also be willing to donate in the event of your death.” 

Tracy Baker, from Neath, has won more than 30 medals in the British Transplant Games and two gold medals in the World Games. The 34-year-old had her first kidney transplant at the age of 11, and a second in October 2007. 

“Since my transplant, I have been running and going to the gym regularly. Before my transplant I didn’t have the energy required for either. Since then, I’ve gone from strength to strength and competing in athletics is a major part of my life now,” Tracy said. 

“I fully support a soft opt-out system as having a transplant changed my life.”

Welsh organ donation law could help hundreds every year

Posted on October 17th, 2012 in Uncategorized

A Welsh law on organ donation that would introduce a controversial opt-out system could create an extra 15 donors a year, the Welsh Government today said.

Every single donor can transform the lives of up to nine people who are on the waiting list for transplant organs.

If the draft Human Transplantation (Wales) Bill is passed, Wales will become the first part of the UK to change the organ donation system.

It is expected to cost £5m to implement between now and 2016-17; half of which will be spent on publicity and an education campaign explaining how the new system will work.

The Church in Wales, Catholic Church and the Wales Eastern Orthodox Mission were united in opposing the draft plans, describing them as “ill-judged”.

In a statement, the churches said that “organ and tissue donation should be freely given, not assumed”.

Supporters of the proposed Welsh law say that if just one extra person donates their organs as a result it will pay for the new policy, in terms of the reduced costs of life-long healthcare.

Launching the draft Bill, which will be subject to another period of public consultation, Health Minister Lesley Griffiths said: “We are seeking a change in the law to increase the number of organ and tissue donors and to save lives.

“One donor can improve or save the lives of up to nine other people by donating their organs and many more through the donation of their tissues.

“Wales has seen a 49% increase in donation rates since 2008, which is a huge achievement to be proud of.

“However, there is still a shortage of organs for transplant. In 2011-12. sadly 37 people in Wales died while waiting for an organ.

“I believe the time has come to introduce a change in the law, together with an extensive communication and education programme encouraging people to make a decision and to ensure their families know their wishes.”

The draft Bill proposes creating a single register, which will record the names of those people, over the age of 18 and who have lived in Wales for six months, who want to opt-in to donation – to be known as express consent – and those who want to opt-out from the process altogether.

Those people who do neither will be deemed to have given their consent and made a positive decision to donate their organs and tissues.

Families will have no legal right to veto donation but, as now, donation will not go ahead if they are strongly opposed to it.

Currently, it is estimated about 40% of families refuse permission to donate organs for transplant when approached. Evidence from other countries which also have opt-out, suggest that figure will fall to 10%.

In a written statement to AMs, Mrs Griffiths said: “ It will be treated as a wish of the deceased to be a donor and a decision which families will be sensitively encouraged to accept.”

It is expected such a change in the law will increase the number of organ donors by about 25% – about 15 donors. This would equate to some 45 extra organs available for transplant.

These organs would be available to people on the UK transplant waiting list and would be allocated on the basis of compatibility and clinical need.

A final Bill is expected later this year following the public consultation, which runs until September. If passed, it is expected the new opt-out system will be introduced in 2015.

An earlier public consultation on plans to move to opt out was largely supportive of the idea, but there remains opposition to such a change.

There are concerns about the ethics of presumed consent and whether NHS Wales has the infrastructure to deal with an increase in organs for transplant – only kidney and pancreas transplants are carried out in Wales.

The Church has been at the heart of opposition to moves to introduce opt-out in Wales.

The Church in Wales, Catholic Church and the Wales Eastern Orthodox Mission were united in opposing the draft plans, describing them as “ill-judged”.

And in a joint statement in January, they said a move to opt-out could undermine both the positive image of organ donation and Wales’ reputation.

Responding to the draft Bill published yesterday(MON), a statement from the Bishops of the Church in Wales, said: “Organ donation is a way of expressing solidarity with our fellow human beings, and sharing with them the gift of life, even after our own death.

“Signing up to the organ donor register is something that all Christians should be encouraged to do. But like any other altruistic gift, organ and tissue donation should be freely given, not assumed.

“We are pleased the Welsh Government has taken note of the responses made to the first stage of the consultation process. There is now much more clarity about the system, especially about recognising the importance of the involvement of families at the time of donation.

“However, the system that will have to be introduced to ensure that potential donors fulfil all the necessary criteria – residence, age, mental capacity, evidence of wishes – will be complicated.

“It would be better to invest resources in wide-reaching public awareness campaigns to encourage more people to become voluntary donors.

“Evidence that any system of ‘automatic’ donation increases the supply of organs – whether it’s called ‘presumed’ consent, ‘deemed’ consent, or ‘opt-out’ – is still disputable.”

Meanwhile, the Christian charity CARE, said the draft Bill is “taking Wales down a dangerous path” and it also believes it is unlikely it will increase the number of organ donors.

Dr Dan Boucher, the charity’s policy officer in Wales, said: “Although the Welsh Government’s heart is in the right place, the policy is not.

“A system of presumed consent is highly concerning both in terms of its ethics and efficacy; CARE will be responding to the Welsh Government’s consultation and urging it to reconsider its proposals.”

Welsh Conservative AMs will be given a free vote on the Bill when it reaches the Senedd, after shadow health minister Darren Millar questioned whether changing the law really is a “silver bullet”.

He added: “Organ donation is an emotive subject and it’s important to examine the both the clinical evidence for and against the Welsh Government’s proposed approach and to listen to the views of the Welsh public during the coming weeks.

“It remains a fact that some countries operating presumed consent systems have lower rates of organ donation so legislation should not be seen as a silver bullet to improving donation rates.”

Article by Madeline Brindley. Published on Wales Online