Generosity of Donors

Generosity of organ donors
Nov 21 2008 by Our Correspondent, South Wales Echo

AS someone who knows first hand how it feels to be given a second chance thanks to the generosity of a donor and to be on the waiting list for a third time needing a kidney transplant, I was disappointed to see the Donor Taskforce in England has rejected the introduction of presumed consent.

Here, the Welsh Assembly Government is taking the lead in addressing the shortage of organ donors and helping save lives by embarking upon a wide-ranging public consultation on presumed consent.

Soft presumed consent still means the family is very much part of the consultation at the time of their loved one’s death and their permission for donation sought – it does not mean organs are taken without permission.

If we have this system in Wales and the rest of UK then many, many more lives can be saved and transformed thanks to the gifts of donors.

Melanie Wager, St Athan

PUBLIC DEBATES ON PRESUMED CONSENT ANNOUNCED

Nationwide discussion to explore whether Wales should be the first UK country to introduce an ‘opt-out’ organ donation system
The dates for a series of debates to gather public opinion on whether Wales should become the first UK country to introduce a system of presumed consent have been announced today.

Welsh Assembly Government Health Minister Edwina Hart said the purpose of the debates was to gauge views on whether the Assembly Government should seek a legislative change in order to increase the number of organ donors.
A discussion document will also be issued and published on-line by the Assembly Government this Friday to invite wider comment from the public. Respondents will be able to use a website to electronically indicate their preference of different systems of organ donation consent.

Telephone interviews with a representative sample of the population will also be carried out.

The Community Health Councils in Wales are inviting members of the public to attend the debates. Those interested in attending are being asked to register rather than just turn up to ensure a broad representative sample of the population attends each debate.

The dates, times and locations for the public debates are:

o Cardiff – Monday 27 October, Taff Conference Centre, Sophia Gardens, Welsh Institute of Sport, from 6:15 pm – 9:00 pm;

o Brecon – Tuesday 28 October, Bishop Meadow Hotel, Brecon, from 12:00pm – 3:00 pm;

o Haverfordwest – Wednesday 29 October, Nant-y-Ffin Hotel, Llandissilio, from 10:00 am – 1:00 pm;

o Caernarfon – Friday 31 October, Siambr Dafydd Orwig, Gwynedd Council, from 1:00 pm – 4:00 pm;

o Aberystwyth – Monday 3 November, Parc Lodge Hotel, Parc y Llun, from 7:00 pm – 10:00 pm;

o Wrexham – Tuesday 4 November, Nick Whitehead Theatre, Main Foyer, Glyndwr University, from 6:30 pm – 9:00 pm;

o Newtown – Thursday 6 November, Ladywell House, Newtown, from 10:00 am – 1:00 pm; and,

o Anglesey – Thursday 13 November, Main Chamber at YMCC offices, Llangefni, from 6:00 pm – 9:00 pm.

Because of a shortage of donors, 150 people have died in Wales in the last five years waiting for a transplant.
Edwina Hart said:
“Around 500 people in Wales are currently waiting for an organ transplant, but with a desperate shortage of donors many face the reality of having to wait years and the possibility they may even die while waiting.

“Although the Assembly Government is already funding campaigns to increase the number of donors, a shortage of organs still remains so it is my belief that we should examine more closely the issue of introducing a system presumed consent.

“Last month, I rejected the recommendation from the National Assembly’s Health, Wellbeing and Local Government Committee that Wales should not pursue a legislative change at this time, because I did not believe that the Committee’s report adequately reflected the evidence it received in relation to presumed consent.
“However, I recognise that any changes to legislation would require further wide-ranging consultation and testing of public opinion as this is a sensitive and emotive issue.

“That’s why I’m announcing this series of debates and publishing a discussion paper for those that are unable to attend but would still wish to comment.
“Once there is clear understanding of public opinion in Wales on the issue of presumed consent, the Assembly Government will consider the need for a legislative change.”

The debates and discussion paper will examine the public’s view of a range of systems such as ‘hard’ and ‘soft’ presumed consent and mandated choice.
The public will also be asked whether certain organs should be excluded from any new system.

To register interest in attending the debates, people should contact Gwenllian Stifin at the Board of Community Health Councils on 0845 644 7814 or enquiries@waleschc.org.uk

The discussion paper can be obtained from Friday at www.wales.gov.uk/health which includes a link to a site where people can indicate their preferred system for organ donation.

Notes:
1. Unlike the current ‘opt-in’ system, presumed consent is an ‘opt-out’ system where it is presumed that your organs are available for transplant to those in need of them unless you have formally registered the view that you do not wish to have them removed after death.

A distinction is often drawn between ‘soft’ and ‘hard’ versions of an opt-out system. In the ‘soft’ version relatives are allowed to veto the removal of the organs of their relative, and in the ‘hard’ version, this veto is not present. The soft version can be found in Belgium and Spain, and the hard version in Austria. Another version of a hard opt out system is one that does not cover some groups. With this system doctors can remove organs from every adult who dies – unless a person has registered to opt out or the person belongs to a group that is defined in law as being against an opt-out system, an example of this is Singapore where Muslims chose to opt out as a group.

In a system of mandated choice, all adults would be required by law to state whether or not they are prepared to donate their organs after death. This could be done when registering with a GP, completing a tax return, or at some other formal occasion.

2. The full response by the Welsh Assembly Government’s to the Health, Wellbeing and Local Government Committee Inquiry can be found at www.wales.gov.uk/publications/

3. The Health, Wellbeing and Local Government Committee’s inquiry was published last July and can be accessed at: http://www.assemblywales.org/bus-home/bus-committees/bus-committees-third1/bus-committees-third-hwlg-home/bus-committees-third-hwlg-report.htm

Families concern over Presumed Consent - missed opportunity

We have just been inundated with concerns about the failure to recommend a system of presumed consent for Wales. At the Eisteddfod people do not understand the missed opportunity.

If you would like to express a view write to your elected Representative.

See http://www.writetothem.com/

All you need do is enter your post code.

BBC NEWS | Health | How the Spanish donor system works

BBC NEWS | Health | How the Spanish donor system works

Charismatic, driven and dedicated - Professor Jose Ramon Nunez works tirelessly as the transplant co-ordinator at the San Carlos hospital in Madrid.

This surgeon is part of an extraordinary national network of doctors trained to identify potential organ donors and speak to bereaved families in the midst of grieving.

It is their skill and focus which has helped create an organ donor system in Spain which is a world leader.

Wales could do this but prefers to wait for England and the oilt tanker in England to slowly turn to wake up. The number of people in Wales waiting for a transplant is at an all time high.

Is the Assembly Health Committee against Presumed Consent?

The Welsh Assembly Health and Wellbeing Committee after months of deliberation will report this week on the Inquiry into presumed consent for Organ Donation. This followed our Petition to the Petitions Committee in November 2007 and the Kidney Wales Foundation Petition of July 2007 accepted by Val Lloyd AM.

It is more than likely that the Committee will not be brave enough to seek Presumed Consent for Wales through a Legislative Competence Order (advice provided allows Wales to do so).It will be interesting to see how well known proponents of the change do vote as we cannot see some AMs being happy with abandoning principles of the need for presumed consent.

It is more likely that the Report will fudge the issue. It will need the bravery of leadership from a Minister to take this subject forward.

Those who are against presumed consent cloud issues with reference to implementing the Organ Donation Taskforce report. Not difficult in Wales but costly in England.We will take forever to do it as we in Wales will need to wait for England.

Watch this space and see what People Like Us think on Wednesday of the Committee's deliberations.

Is the Organ UK Donation Taskforce against presumed consent?

In 2006, the Organ Donation Taskforce was convened to identify barriers to organ donation, analyse factors militating against organ donation and make recommendations for increasing donation rates within existing legal frameworks. The Taskforce's report "Organs for Transplants: A report from the Organ Donation Taskforce" was published on 16 January 2008 and contains a number of major recommendations designed to strengthen the infrastructure for organ donation and transplantation. The Government have accepted the recommendations, in full, and implementation is already under way and we believe can be implemented Wales far quicker than England.The UK wants it done at the same time.

The Taskforce has now been asked to consider the implications of changing to a system of presumed consent for organ donation in the United Kingdom, including the practical, clinical, ethical, legal and societal issues. The Taskforce has established expert working groups to advise on these issues and will report initial findings to Ministers in the summer.

This is a UK Taskforce consisting mainly of civil servants and NHS employees. Not all the evidence is in but signs are that the UK NHS will hijack the discussion and recommend against it.This is closed shop Taskforce. You need to part of the establishment to join or be part of the UK Transplant agenda.

The Assembly Health Committee reports next wednesday 30 of July. Wales may have a different view. It was Wales that mobilised the DVLA to get donation on forms.England and Westminister does not have all the answers on this subject.

Roy J. Thomas Chair of Kidney Wales said " Having given evidence to many committees in recent times we look forward to the Assembly Committee's approach next week.We are due to present our own views to the UK Taskforce in writing the very next day but we have written to the Chair of the UK Taskforce. Wales is still part of the UK but this is sometimes forgotten in London".

BBC NEWS | Wales | Support for organ opt-out scheme

BBC NEWS | Wales | Support for organ opt-out scheme

Nearly half of those surveyed by a Welsh assembly committee say they would like their organs taken automatically after their death to save a life.

The health and wellbeing committee is investigating whether Wales should adopt a system of presumed consent for organ donation.

Committee chair Jonathan Morgan says he wants the public's views to taken into account along with expert evidence.

About 470 people in Wales are waiting for an organ transplant.

Transplant charities want Wales to lead the way in adopting a system where organs would be taken from people following their death unless they had opted out beforehand.

A total of 48% of those who responded as part of the consultation said they would like their organs to be removed automatically to help save or improve someone else's life.

Donor Mum Supports Consent Change

A GWENT mother who donated one of her kidneys to her daughter is supporting proposed changes to the organ donation procedure.

Kathryn Fleet, 42, donated her kidney to her daughter Kirsty Fleet, 19, in December 2007 after Miss Fleet suffered kidney failure.

Mrs Fleet, who was an organ donor prior to donating her kidney, said she thinks the system of presumed consent would help the thousands of people waiting for a transplant each year.

Miss Fleet's father Mark, 47, sister Jodie, 21, and brother Joel, 18, all offered to donate their organs and were all matches, but medics chose Mrs Fleet to be the donor.

Prior to the operation, Miss Fleet had been undergoing dialysis three times a week.

The Tredegar pair underwent surgery at the University Hospital of Wales, Cardiff on December 17 and were the 100th transplant performed at the hospital in 2007.

BBC NEWS | Wales | Debate on opt-out organ donation

BBC NEWS | Wales | Debate on opt-out organ donation

Debate on opt-out organ donation

There is a serious shortage of organs in the UK , Edwina Hart said
A series of public debates are to be held about introducing a system of "presumed consent" for organ donation, says the Welsh Assembly Government.
Health Minister Edwina Hart told AMs she wants people to consider Wales moving to an opt-out system.

It would mean everyone would be considered as a potential organ donor at death, unless they had registered their objection.

Charities and people who have had transplants have welcomed the move.

Around three-quarters of a million people in Wales are currently on the organ donor register.

But the gap between the number of organs donated and the number of people waiting for a transplant is increasing, the minister said.

"I know without donor families I myself would have been dead 12 years ago" said

Alison John, ambassador for Kidney Wales Foundation

Roy J. Thomas, chair of Kidney Wales Foundation, which supports people with kidney disease and has lobbied for the opt-out system, added: "We believe that if people are prepared to accept an organ for themselves or their loved ones then they should be prepared to give an organ to help save someone else's life."

Last month a survey by the British Medical Association revealed that two-thirds of more than 2,000 questioned felt the UK should move to an opt-out system.

But just over a quarter of the people surveyed said they were on the register.

FIRST MINISTER HEALTH MINISTER AND CHIEF MEDICAL OFFICER IN FAVOUR OF CONSIDERING PRESUMED CONSENT

In a response to the Western Mail the following statement was given by the Government:

A Welsh Assembly Government spokesman said, “The Chief Medical officer Dr Tony Jewell, the Health Minister Edwina Hart and First Minister Rhodri Morgan are personally in favour of considering presumed consent as a way of increasing the number of organ donations.
“The Health Minister has stated this view at two recent meetings with Kidney Foundation Wales. However, they have all recognised that any changes to legislation would require wide-ranging consultation and testing of public opinion.
“The Welsh Assembly Government recognises there is a critical shortage of donated organs and increasing numbers of patients being listed for transplant.
“It is therefore important for people to consider signing up to the UK-wide organ donation register.”

See article below on Melanie Dark by M Brindley Health Correspondent of Western Mail

WESTERN MAIL FEATURE CAMPAIGN

icWales - Calls for Welsh transplant opt-out scheme click here for full article in Western Mail

Our CAMPAIGN is on the road Western Mail Saturday 8 September 2007

Two of our key supporters Gaynor Taylor and Helena Jones speak up and show leadership

CAMPAIGNERS fighting to increase the number of organ donors in Wales have called on the Chief Medical Officer to break his silence on presumed consent.

And the Kidney Wales Foundation has appealed for new Wales-only laws to change the current organ donor system from an opt-in one to an opt-out system.

Neither Chief Medical Officer Dr Tony Jewell nor Health Minister Edwina Hart have publicly stated whether they are in favour of a system of presumed consent, which many believe would increase the number of potential donors and reduce the waiting lists for transplants.
England’s Chief Medical Officer Sir Liam Donaldson has already announced his full support for presumed consent.

Helena Jones, 74, from Glynneath, whose four children need a kidney transplant, said, “Dr Jewell should have the guts to answer the question and not hide behind the skirt of the [Health] Minister.

Gaynor Taylor has kept Richard Taylor's gift alive.http://www.uktransplant.org.uk/ukt/newsroom/life_stories/story.jsp?id=81

Gaynor Taylor, from Barry who made the decision to donate her skateboarder son Richard’s organs after a tragic accident, described organ donation as “a gift” which can help to ease the pain of losing a loved one.

“If I can do it, others can certainly do it,” she said. “To me it meant that Richard’s life wasn’t in vain and that some good came out of the tragic loss a young life.”

http://www.barryanddistrictnews.co.uk/mostpopular.var.1650714.mostviewed.richard_taylor_memorial_skate_park_opens.php
Allison John, from Fishguard, who was the first person in the UK to have a liver, heart and lungs and kidney transplant said, “Wales led the way in calling for a smoking ban, it can do it again with transplants.
“Hundreds of people are dying needlessly because of the dire shortage of organs but there is a way we can save lives if we are brave enough to step in first. The Assembly Government now has the tools to do the job – it’s time to use them.”

http://www.richardtaylorfund.com/

Presumed consent debate

The Welsh Assembly Government or National Assembly must introduce legislation for presumed consent to increase organ donation.

This is of course a complex moral argument, but here in Wales we have not had a public debate about the viability of a presumed consent scheme.

Kidney Wales offers unequivocal support for a system of presumed consent and we are confident that such a debate will lead to the same acceptance of presumed consent in Wales as has happened in other European countries. We will support and work with any Member of the National Assembly for Wales or with the Welsh Assembly Government to bring forward the appropriate legislative framework to draw down to the National Assembly the power to determine how organ donation is facilitated in Wales. An informed discussion on presumed consent is needed in Welsh civil society as in other countries.

Launch of Campaign date and BMA support for Presumed Consent

The People Like Us launch date is looking likely to be at the end of September.

Kidney Wales met media, policy and legal advisers of the British Medical Council (the BMA) this week to discuss the Campaign.

The BMA has been lobbying the Assembly and campaigning for presumed consent for many years.