Wales could lead the way…..

Plaid Cymru MP Hywel Williams has laid an early day motion backing Wales’ decision to explore moving to a system of presumed consent. It says:

“That this House welcomes the announcement by the Welsh Assembly Government that Wales will move to a system of presumed consent, based on a soft opt-out system for organ donation; congratulates the patients and organisations, led by the Kidney Wales Foundation, on persuading the Welsh Assembly Government to take this step; recognises the overwhelming public support for such a move; and, following a free vote in the National Assembly for Wales, looks forward to supporting that move in this House, alongside a strengthened infrastructure to support the change.”

View the signatories here

This EDM has good cross-party support, and I hope to see more signatures added to the list over the next few weeks.

I’m glad that the Welsh Assembly Government are willing to take the lead, and send a clear message to the rest of the UK that a 'soft' system of presumed consent would increase donation rates and save Welsh lives.

BMA Cymru Wales believe that moving to a system of presumed consent, where it is assumed that people are willing to donate their organs after death unless they opt out, combined with other reforms to the transplant infrastructure, would play an important part in improving the organ donation system so that more lives can be saved.

The main difficulty with the current system is that where, as in the majority of cases, relatives do not know what their loved ones wishes are, they frequently, and understandably, opt for the default position, which is not to donate.

This would be addressed by the introduction of an opt-out system where the default position would change in favour of donation. We recognise this is a subject many people hold strong views about and as such, those who do not want to donate their organs will sign up to opt out.

The fact is, that people are dying while waiting for an organ transplant. It is vital therefore, that we increase the number of donors available, and we believe that a system of presumed consent with safeguards will do this.

A shift towards making donation the default position would reflect a positive view of donation, demonstrating the very strong support for it within society today. Therefore, over time donation would come to be seen as the norm, rather than the exception.

BMA Cymru Wales want what's best for patients, and ensuring a supply of organs that will meet current and growing demand must remain our ultimate goal.

Presumed consent: the debate

Fervent debate has followed the announcement by Health Minister Edwina Hart last Friday that Wales could move to a system of presumed consent for organ donation.

Jonathan Morgan AM has voiced his concern over the announcement. This is what I said in response:

“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.”

I’m looking forward to hearing Jonathan’s response.

We will continue our work with the Welsh Assembly Government and other partners over the next few months to raise public awareness of the urgent need for change and the rationale behind the presumed consent option. You can expect to hear a lot more from us on this important issue.

What are your views on the announcement?

Organ Donation in Wales

BMA Cymru Wales is delighted with the announcement that the WAG will explore the possibility of introducing a soft opt out system for organ donation in Wales, and that a bid for a Legislative Competence Order will be submitted.

I hope that this brave decision by the Health Minister will mark a small step towards ending the tragedy of patients dying while waiting for a transplant.

Organ transplantation saves lives and it can transform the lives of people suffering disability and the tremendous burden of dialysis. There have been many high profile cases highlighted by the media over the last few years which touched us all.

As long ago as 2000, doctors voted for an opt-out/presumed consent scheme to be introduced in the UK following its success on the continent which increased the number of organs available for transplants and therefore reduced the number of patients who die waiting for a transplant. They also agreed that a public education campaign about the merits of organ donation should take place before introducing the scheme.

BMA Cymru Wales will continue to work with the Welsh Assembly Government, Kidney Wales, and other partners over the next few months to raise public awareness of the urgent need for change and the rationale behind the presumed consent option.

Tell us what you think of the announcement.

Action not words now needed on organ donation

Around 30* people will have died in Wales in the last year, waiting for a transplant on the organ donor register.

That's why BMA Cmyru Wales is calling for action to be taken by the Welsh Assembly Government with regard to possible changes to the organ donation system.

It’s also a year since the Assembly’s Health Committee rejected any ideas to change the organ donation system in Wales.

This led to the Welsh Assembly Government’s wider consultation on the matter, which has just closed.

We submitted a response to this consultation, reiterating calls for a “soft” system of presumed consent to be introduced and to do so sooner rather than later, before more lives are lost.

There are several reasons why the BMA believes that such a system would produce a far higher potential donor rate than at present and in turn, save more lives.

The main difficulty with the current system is that where, as in the majority of cases, relatives do not know what their loved ones wishes are, they frequently, and understandably, opt for the default position, which is not to donate. This would be addressed by the introduction of an opt-out system where the default position would change in favour of donation. We recognise this is a subject many people hold strong views about and as such, those who do not want to donate their organs will sign up to opt out.

The number of people on the organ donor register has doubled since 2001, from 8 million to more than 16 million. But 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.

Presuming consent rather than presuming objection is also more likely to achieve the aim of respecting the wishes of the deceased person. Given the very high level of support for organ donation expressed in repeated surveys (up to 90%) 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. With such a shift towards making donation the default position this reflects a positive view of donation, demonstrating the very strong support for it within society. Therefore, over time donation would come to be seen as the norm, rather than the exception.

Added to this is the fact that there is significant and growing public and professional support for such a shift. Recent public opinion polls show around 60-70% support for a shift to an opt-out system of consent for organ donation. This is consistent with the views found in the Assembly’s own public engagement exercise.

The time really has come, before more people die waiting in vain, the Welsh Assembly Government needs to stop procrastinating and seek an LCO (Legislative Competence Order) from Westminster to bring in a soft system of presumed consent.

*The figure of 30 people dying in the past year in Wales is based on 150 people dying in Wales waiting on the organ donor register in the last 5 years.

Consultation needed on organ donation debate

The Health Minister's announcement, to look into changing the law surrounding organ donation in Wales, in particular, the consideration to introducing an opt-out system, is a good move.

For many years now we've backed the idea of a “soft” opt-out system. There is little doubt that such a system would produce a far higher potential donor rate than at present, which is far too low at 22%. Experience of other European countries that have already introduced an opt-out scheme have proven this to be the case. More than 500 people in Wales are still waiting for transplants and one person dies each day in the UK, waiting.

A “soft” opt-out system involves people having the opportunity at EVERY stage, to make it known if they do not want to donate their organs after death. Consent to donation would only be presumed, if individuals expressed no objection. Families would also be consulted and donation would not proceed if relatives would be seriously distressed. Doctors would consult with patients’ and their loved ones, every step of the way.

In previous public opinion surveys, the vast majority of people say they would be willing to donate their organs. Unfortunately, this does not translate into people who actually sign the register. This is where the crux of the problem lies. People want to be donors, but for whatever reason, they just don't get round to signing the register. Of course, that would not be an issue with an opt-out system and that is how a change to legislation, could make all the difference to anyone left waiting on the organ donor register.

By making improvements to the transplant infrastructure as well, such as more training, increasing the availability of transplant co-ordinators, reviewing the health service’s capacity to cope and ensuring sufficient availability of intensive and critical care beds, then Wales would really be able to say it had made a significant contribution to saving the lives of those on transplant lists.

Another clear message from this consultation is that far more needs to be done to ensure the public is fully informed about the current system and fully involved in any future changes and decisions.

What do you think about introducing a "soft" opt-out system?

Be interesting to know what doctors' views are on this...

The wait goes on for hundreds of people in Wales on the organ donor register

Hard-hitting health campaigns can nowadays, seem to lack the very ‘shock’ factor they are trying to illicit. But I think the latest TV advert by Kidney Wales certainly should get across the point to viewers about just how important it is anyone considering signing up to the organ donor register does so, NOW. The fact that one person dies every 11 days waiting for a transplant really does illustrate how time is of the essence for anyone on the transplant list.

I also think this just goes to prove again how important it is that we move towards a system of presumed consent, as chairman of Kidney Wales Roy J Thomas says “We are in the grips of an organ donor crisis in Wales”. I still think the best way of tackling this crisis is to change the system as it stands now. And that’s why I welcome the private member’s bill on presumed consent being debated in the House of Commons tomorrow (put forward by Jeremy Browne, MP).

The BMA backs the idea of presumed consent, which would see all adults having the opportunity at every stage, to make it known if they do not want to donate their organs after death. Among the safeguards proposed - high profile publicity campaigns which would make everyone aware of the choices. Consent to donation would only be presumed, if individuals expressed no objection. Families would also be consulted and donation would not proceed if relatives would be seriously distressed. Doctors would consult with patients’ and their loved ones, every step of the way.

Some 90% of people say they would be willing to donate their organs. Unfortunately, this does not translate into people who actually sign the register - that stands at roughly 30%. And there lies the crux of the problem, it seems people want to be donors, but for whatever reason, they just don’t get round to signing the register. Of course, that wouldn’t be an issue with a presumed consent system and that is how a change to legislation, could make all the difference to anyone left waiting on the organ donor register.

Find out all about the BMA’s position on presumed consent by reading the BMA’s briefing paper on organ donation

Sign up to the organ donor register

More support for presumed consent for organ donation

Research published in the BMJ today gives more weight to BMA Cymru Wales’ calls for introducing a presumed consent system (where people opt OUT, instead of IN) for organ donation in Wales.

The report looks at 13 studies that either assessed organ donation rates before and after the introduction of presumed consent in a single country, or, compared rates between countries with similar systems.

And several of them highlight a significant link between increased organ donation rates and presumed consent. In one case, estimated donation rates were increased by as much as a quarter.

This same report does also point out that it probably isn’t solely presumed consent which has triggered the change, with other factors such as overhauling the organ transplant infrastructure being equally important. There wouldn’t be much point making such a fundamental change to the system if we couldn’t cope with demand.

The BMA has always maintained a system of presumed consent is the way forward to help with the chronic shortage of donors we currently have in Wales. And we have also argued running alongside this, that the whole transplant system needs addressing at the same time, to make sure the necessary parts are in place, such as transplant centres and coordinators.

This new research is encouraging though and will hopefully be noted by our Health Minister, currently consulting on the best way forward on this for Wales.

Wales now needs to go it alone on presumed consent organ donation

I'm really saddened to read the UK Organ Donation Taskforce's report on presumed consent for organ donation.

It also gives me a bit of a sense of deja vu, it not being so long ago since the Assembly's Health, Wellbeing and Local Government Committee rejected the idea too.

If you're a regular reader of this blog, you'll no doubt be very familiar with the BMA's stance on presumed consent, which is in favour of a soft version of it (ie anyone who does not want to donate their organs, can register their objection. Families would also be consulted to identify any unregistered objection).

This perhaps gives more weight to the argument that Wales should also go it alone, being left to decide for ourselves what organ donation system we think is best. It's all well and good different committees and organisations submitting recommendations, but ultimately it should be down to the general public to decide. Which is why we fully support the Welsh Assembly Government's series of public consultations on the issue taking place at the moment.

Let's hope it leads to an informed debate and informed decisions being made. Afterall, it is hundreds of people's lives on the organ donor register in Wales, potentially being put at stake.

Presumed consent for organ donation back on track?

Last month, I blogged on how disappointed I was that the Assembly's Health Committee had rejected calls to introduce presumed consent for organ donation.

That's why I am delighted by today's news.

The Welsh Assembly Government, like the BMA, disagrees with the Committee and says that we should have the power to introduce presumed consent. The Health Minister, Edwina Hart had already made her personal views very clear that she supports presumed consent.

Given the Welsh Assembly's positive intervention it's clear that BMA Cymru Wales, Kidney Wales and the many other campaigners must now keep-up the pressure, muster public support and finally get the powers that Wales needs to save even more Welsh lives.

Wales has lost a golden opportunity to take the lead on organ donation

The Assembly’s Health Committee has rejected the idea of introducing presumed consent for organ donation in the near future. They voted against a proposal to apply for a Legislative Competence Order (LCO), which would give the Assembly the power to bring in such a system in Wales, by six votes to three. And the reason they gave for doing so? They do not believe that it is currently the most urgent priority and would act as a “distraction”. So does that mean missing out on the chance to potentially save more lives is not a priority?

The committee also recommended that if any presumed consent system were to be introduced in the UK, it should be the "soft" version, where loved ones are consulted and their views taken into account. This is something BMA Cymru Wales wholeheartedly supports and I cannot see why this should not have been an option for consideration.

There is little doubt that a system of presumed consent would produce a far higher potential donor rate than at present, which is far too low at 22%. Experience of other European countries that have introduced presumed consent have demonstrated this. Some 400 people in Wales are still waiting for transplants and one person dies each day in the UK, waiting. The committee has missed an opportunity to shorten the delay for those people waiting desperately for a transplant. It is difficult to see how the decision will be explained to these patients and relatives as it does not stack up on the basis of the evidence.

We appreciate some people may feel that presumed consent means interference by the state and they will have no control over what happens to their organs after death. With a “soft” presumed consent system that certainly is NOT the case. A person’s organs would only be used to benefit others, IF the deceased’s family agreed to it and only if that individual had not removed themselves from the register and that option would be open at any time.

It would seem the committee did not even properly listen to and take into account the views of the general public they surveyed as part of this report. As many as 73% of those polled said when they die, they would like their organs to be taken automatically to save or improve someone’s life. And yet six of the health committee members voted AGAINST presumed consent. So what was the purpose here of consulting with the general public? The committee even reached the conclusion that, “presumed consent appears to have a positive effect on donation and transplantation rates.”

BMA Cymru Wales acknowledges that introducing a “soft” system of presumed consent would not necessarily, on its own, solve the shortage of donors, but it would go along way to doing so. And by making improvements to the transplant infrastructure as well, such as more training, increasing the availability of transplant co-ordinators, reviewing the health service’s capacity to cope and ensuring sufficient availability of intensive and critical care beds, then Wales would really be able to say it had made a significant contribution to saving the lives of those on transplant lists.