The government presumes too much
The announcement by the Health Minister that she wants the Assembly have legislative competence over organ donation is flawed for two big reasons.
Firstly there is a question as to whether it is better for the UK as a whole to have a common system for regulating the use of organs or whether a nation like ours should have a separate legal system. The experience in mainland Europe is that organ donation and usage is organised at a national level, even in Spain one of the most decentralised countries in Western Europe where presumed consent operates, it is not left to the 17 autonomous communities.
Secondly there is the assumption that changing the law and the system to presumed consent suddenly leads to an increase in available organs. This is simply not the case. The law in Spain was changed in the 1970s but there was no positive impact. The breakthrough happened in the 1990s when the Spanish government invested in the clinical training so that medical staff could feel happy to approach grieving relatives. They also invested in the transplantation units and the coordination of the organs that were available. There is no evidence to suggest that the change in the law did anything. The investment though was absolutely key.
My concern with have an opt out system is that it relies on people being lazy, perhaps having never uttered what they feel about organ donation. In Spain there is no register of who has opted out, it’s just left to families who might not whether the deceased had any objections to their organs being used.
I have an organ donor card, my view has been recorded in a positive way, it’s a pity that the Welsh Assembly Government has given up on leading the nation in urging people to show their generosity.
December 19th, 2009 at 8:47 pm
Its typical Edwina though she has been determined on this,her advisor who is also her friend says this is this is the way to go ,so Edwina follows.
I agree with you -opt in and encourage is best.
December 21st, 2009 at 9:38 am
Jonathan
I know its not news to you that on this you and I disagree.
I’m sure we’ll continue to debate this over the coming months.
I think there’s two things worth saying,
1, This isn’t an immediate change. It is one that will take time to introduce – we are realistically looking at a time frame of years. At that point this is no excuse for the infrastructure to be in place to support the change. The network of donor co-ordinatiors across Wales and the new transplant unit at the heath are just two examples.
2, Have a look at this paper if you haven;t already. It suggests, taking a pan European view on the impact of presumed consent. I only came across it the other day but it supports findings I’ve seen elsewhere. http://www.dangoldstein.com/papers/DefaultsScience.pdf It concludes a 16% increase from moving to presumed consent.
Ali
Director of Comms and Events, Kidney Wales Foundation
December 21st, 2009 at 4:46 pm
Dear Jonathan Morgan AM,
We recognise that the introduction of an opt-out system would be a controversial decision, and as such those who do not want to donate their organs will sign up to opt out. A law on presumed consent would, at a single stroke, save lives whilst still giving the individual the right to have a choice.
Given the very high level of support for organ donation expressed in repeated surveys it is reasonable to presume that those who die without making their views known are in the majority who want to donate, rather than the minority who do not.
Presuming consent rather than presuming objection is more likely to achieve the aim of respecting the wishes of the deceased person.
We believe that with further debate and information about the way such a system would operate, there will be widespread public and professional support for such a change.
The gap between the number of organs available and those needed continues to grow, with around 1,000 people dying each year in the UK waiting for an organ.
We must recognise that the current system is unable to meet the increasing demands placed upon it. Steps must be taken to increase the availability of organs for transplantation.
Let’s show that we still care deeply about the health of our nation and that we are willing to lead with bold initiatives whilst other countries dither and waver.
Kind Regards,
Dr Richard Lewis, Welsh Secretary, BMA Cymru
December 21st, 2009 at 5:49 pm
Interesting to read about the Spanish experience, but I take issue with the “it relies on people being lazy” concept.
I too carry a donor card – people can help themselves to whatever they want of mine when I cease to have a need for them – but I do support the presumed consent, ‘opt out’ idea. We bury or burn too many organs that could change lives for people right now. I fully respect people’s wishes if they don’t see things that way – but if people feel that strongly about this issue, then they would surely make an effort to opt out. If they are lazy, then clearly it can’t be that much of an issue for them? One could, for example, easily envisage people whose religious convictions oppose donation being encouraged by their religious leaders to opt out.
I think good record keeping has to be the key here, either way. What if, fate forbid, you fall under a bus in some remote corner of the UK, without your card on you? Your loved ones could be some distance away, and by the time they have told the doctors of your good intentions, it could well be too late to get your bits out. Surely we need a register EITHER WAY – either of those who have said, like you and I, ‘take what you want’, or those who say ‘leave me intact’. Given the fact that my driving record, passport details and a multitude of other data is already stored, surely this is a simple process?
December 29th, 2009 at 7:42 pm
Dear Jonathan,
The Committee of the Assembly you chaired which reported in July 2008 did not rule out a change in legislation on opt out.
Across the UK, three people die a day waiting for a transplant.The current system does not work. It’s a brutal reality that there simply are not enough organs to give life to those waiting. Despite seven in 10 people in Wales wanting to be on the register, just 810,000 people are on it. I find the statement that the people of Wales to be lazy as difficult to agree with.Apathy may a descirption but laziness is not an agreeable description. Our surveys suggest otherwise.
Similar gaps exist in Scotland, England and Northern Ireland.
The Assembly Cabinet and not only the Minister Edwina Hart took these steps and I know from discussions with Mr Nick Bourne that this change has cross party support including members of the Conservative Party and many agree with the proposals and I believe Mr Cameron can be persuaded.
Wales is to become the first place in the UK to move from a system of opt-in to opt-out organ donation. The system the Cabinet announced, is one of “soft opt-out”, means that people are presumed to want to be organ donors unless either they have joined a opt-out register, they cannot be identified, their wishes can be proven to have changed or immediate relatives object. These exemptions are crucial; they mean that only those who want to donate do so.
This system is commonplace in other European countries. When Belgium introduced the opt-out system in 1986 its national rate of organ donation rose by 55% within five years. Belgians can take themselves off the register but only 2% have. In Spain, where a similar system exists, there are 35 donors per million compared with just 13 in Wales and 14.9 in the UK as a whole.I disagree with your views on Spain.We have more research on Europe than undrtaken by your Health Committee last Year. Your Report failed to take on board several important pieces of evidence.
Spain didn’t just achieve this by switching to a soft opt-out system. It built its infrastructure to ensure that loved ones were asked and organs co-ordinated so that they could be used to save someone else’s life. The Organ Donor Implementation Taskforce and the NHS are responsible for making sure our infrastructure works sensitively and appropriately. The Cabinet has thrown down the gauntlet to them to deliver – patients deserve no less.I hope you agree.
There are people who have their concerns about a move to this system. There is the peculiarly British awkwardness around death. Some people fear, incorrectly, that doctors would fight less hard to save them if they knew their organs could go to someone else. There is no evidence of this, but the government has recently given clarification to doctors to further allay any fears. People visiting Wales from other parts of the UK will be treated exactly as British people are currently when they visit countries such as Spain. That is, their organs would not be taken without the knowledge that they wanted to donate them and the support of a loved one. While some people do have these reservations, from our recent survey Welsh people support a move to soft opt-out two to one.
American experts predict soft opt-out will increase the number of organs available by 16% – it will save lives. The Welsh could go it alone with this switch, or will the rest of the UK be joining them? Will you as a caring Conservative do so?
I hope we can continue our discussion on this important piece of legislative change.
I look forward to your support of the latest Donate Wales Campaign at http://www.donatewales.org as you have done in the past.Thank you for support for kidney patients in Wales.
I have always respected your views and continue to wish to debate this issue with you on the important subject but we cannot allow a broken UK system to continue.
Your sincerely,
Roy
Roy J Thomas
Chairman
Kidney Wales Foundation
http://www.kidneywales.com