Organ Donation

Nia Griffith Excerpts

Wednesday 30th November 2011 Westminster Hall

[Glyn Davies]

My hon. Friend makes a good point. Because of the brief that the British Medical Association has circulated to Members, I want to quote the report’s conclusions so that we know what the taskforce actually said. One of the main recommendations states:

“The Taskforce’s members came to this review of presumed consent with an open mind, with many sympathetic”

to presumed consent. It went on:

“the more the Taskforce examined the evidence, the less obvious the benefit, and the more multifaceted and multidimensional the issue of increasing donor numbers was revealed to be…The Taskforce reached a clear consensus…that an opt out system should not be introduced”

as it could impact negatively on organ donation.

I was quite shocked to receive the BMA parliamentary brief because it sets out without the slightest doubt to give the impression that the taskforce recommended the opposite of what it did recommend. That is verging on a lack of professionalism. I have huge respect for the BMA and I was very disappointed to receive its parliamentary brief. It will seriously damage my confidence in such briefs in the future, whereas I depended on them in the past.

[Nia Griffith (Llanelli) (Lab)]

When someone dies it can be very difficult for doctors to talk about organ donation at that time. Does the hon. Gentleman agree that what we need is a huge drive to get families to talk about consent well in advance? We must be honest and acknowledge that organs that are fresh from healthy bodies are the most desired, and it is often the tragic deaths that lead to organ donation. We need to get as many people as possible signed up, other than those with strong religious objections. If people are signed up, doctors can have an informed discussion with them.

[Glyn Davies]

I absolutely agree, but I do not necessarily agree with having a list identifying people. I hope to cover that point. Having people’s views identified outside the traumatic circumstances that surround a death is absolutely key if we are to increase the number of organ donations in this country. That is what the evidence in other countries tells us.

When the taskforce was set up, the Prime Minister of the day expected it to support a transplant revolution, but of course it did not. A similar conclusion was arrived at by a cross-party group of Assembly Members who looked at the same issue. The Members I talked to went into that committee expecting to support presumed consent, but they said in the Assembly that it should not be presumed. They did not think it would deliver the increase in organ donation levels that was generally anticipated.

The second report of the organ donation taskforce in 20008 recommended an improvement in transplant co-ordination, and that is being implemented. The number of organ donors in the UK has risen from just over 800 in 2008 to more than 1,000 last year. That is an extraordinary and dramatic improvement that has saved hundreds of lives. I have searched pretty hard, and the evidence I found is that the way forward is to look at the problem logically and in depth, conduct serious research and then take well-considered action.

Many people support presumed consent because they intuitively feel that it must make a difference. Opinion polls show support, and it is not surprising that they do. When people are going around saying that the change to presumed consent will increase the number of organs available, others will automatically say that they are in favour, but the reality is not what they think. There is a misconception that, if a citizen does not put their name on a centralised, opt-out register, their organs can be used for transplantation. This is a half-consent system, and it is not the presumed consent system that is being proposed. With soft opt-out, or presumed consent with safeguards—these are the phrases used—the actual decision to donate still rests with potential donor’s family, as happens under the current system. The key issue—the point raised earlier by my hon. Friend the Member for Cardiff North (Mr Evans)—is that the donor’s wishes are known by his or her next of kin.

It is always dangerous to draw conclusions from international examples but, for many years, Spain was presented by those who support presumed consent as proof of the effectiveness of that system. Since the late 1980s, Spain has had the best rate of organ donation in the world and has rightly been recognised as a model for other countries. Because Spain legalised presumed consent in 1979, it has been assumed that this played a key part in its success. However, the 1979 legislation to introduce presumed consent had no impact whatsoever on Spanish donation rates. Key organisational changes introduced 10 years later, in 1989, delivered the success of which Spain is so rightly proud. Spain does not have, and has never had, an opt-out register.

The director of the Spanish organ donation body, Dr Rafael Matesanz, has said that the 1979 legislation is dormant and plays no role in Spain’s outstanding organ donation rates, but this fact does not deter the supporters of presumed consent. They now ignore Spain, citing cultural differences to explain why Spain is not a good example to follow. They also ignore the fact that the United States has one of the best organ donation rates in the world, despite there being no presumed consent there. In fact, civil liberties issues in the States would almost certainly prevent presumed consent being introduced there.

The focus now has moved to Belgium and to studies performed in Belgium 25 years ago, between 1984 and 1987. I tried to discover what happened, because I want to see more organs donated. If a system works, and there is evidence to show that it works, it is important that we study to such examples, so I have gone to a lot of trouble to find out what happened in Belgium.

Belgium introduced presumed consent legislation in 1986. The key result was that the rate of kidney transplantation in Belgium rose from 200 per annum in 1984-85 to 300 per annum in 1987. Again, under more detailed examination, the claim that this is the consequence of presumed consent just does not stand up to scrutiny. The results of these studies were published, as a page and a half meeting report, in 1990, by L Roels and co-workers, Transplantation Proceedings, volume 22, pages 2078 to 2079. The authors state clearly that the presumed consent legislation

“was consolidated by a nationwide information campaign about the benefits of organ donation…and is being maintained by continuous efforts to inform healthcare professionals about the modalities of organ procurement procedures.”

More importantly—crucially—the authors go on to say:

“Whereas before 1986 most smaller non-university hospitals were reluctant to participate in organ donation activities, by lack of any legal security in the absences of an adequate legislation. The majority of organs harvested” —

I do not like that word; I prefer “donated” —

“during the last 3 years were performed in this particular group of hospitals.”

Presumed consent was clearly a major factor in increasing organ donation in Belgium in the 1980s, but it is irrelevant to the current position in the UK because the legal certainties have never been an issue. It may have had some influence in Belgium but it is clear that Belgium is a very weak example of evidence on which to base a major change in UK policy.

--- Later in debate ---

[Glyn Davies]

The figures that I have seen show that the refusal rate in those communities is much higher in Britain. The rate of allowing organs to be donated by the next of kin is actually reducing among the non-BME population in Britain. So there is a lot of work. I do not know the answer to that. I do not want to make suggestions that I have not researched. I am trying to stick to the research, and I have not done research into that, although it is clearly an issue. It was a specific part of a debate here about two months ago and it is an issue we must tackle.

Finally, those of us who disagree with the proposals being put forward by the Welsh Government and advocated by my friends at Kidney Wales Foundation and the BMA have a responsibility to engage seriously with what is a genuine attempt to increase the availability of organs for transplant. It is a worthy objective. It is accompanied by a commitment to invest considerable sums of public money to achieve it. It has led to a lot of debate already, particularly in Wales, to this debate today, and will lead to much more. Many hon. Members are interested in the debate. If Wales and the Welsh Government seek to introduce the legislation, there will be huge debate across the UK. The debate itself is hugely helpful.

The final point I want to make this morning is that we should build on what is so obviously working. There is currently a national transplant week and a national donor day. However, these do not impinge as much on the national consciousness as we would like them to in the UK. I admit that I did not know that they occurred. If part of the extensive resources which would be used to implement the presumed consent legislation were to be used to create a national donor and transplantation day in Wales, what a difference that could make. It could have real impact. The resources could be used to celebrate the donors and their families of the preceding year on television, radio and the newspapers. The success stories of the recipients of new organs who are living a full life would be inspirational as examples and would help discussion about this issue, so that next of kin would know what their families’ wishes were.

[Nia Griffith]

Would the hon. Gentleman consider the advantages of trying to have specific points in people’s lives when they are asked about organ donation, such as when they get their driving licence or their national insurance number, or something like that, so that there is a methodical way of asking people to sign up?

[Glyn Davies]

I thank the hon. Lady for raising the point. That is not directly related to the debate today, but the point raised would support and strengthen the current system of an opt-in card, and it is a good idea. I have thought about it a lot and most people would accept that that is a reasonable way forward. It asks people their opinion and requires them to think about the issue. As long as we can extend that—having them tell their next of kin what their position is—it could be very successful.

We could learn from what has happened in Spain: Spain is the most successful country in the world. We also could establish a 24-hour information telephone line, with many more lines available on the national organ donor and transplantation day, if it were set up. On that day the people of Wales could be encouraged at every opportunity to tell their loved ones and their next of kin what their wishes are regarding organ donation. Husbands, wives and children will always be asked their permission. If you are ever unfortunate enough to be a potential donor, you need to have your next of kin know your wishes, so that they will be implemented. Telling them your wishes is much simpler, hugely cheaper, more effective and far more flexible than presumed consent legislation. Establishing a national database is expensive; overseas experience suggests that only 1% or perhaps 2% of the population are likely to use it. We know that it is more probably some 10% of people who do not want their organs to be donated; those are the figures we get—that about 90% of people are content.

This is a poor substitute. We all need more organs available for transplant. There is no dispute about that—it is a worthy objective that nearly everybody signs up to. Building on the success that we are achieving, involvement in a transplant co-ordination system is the way to go. Building on the evidence and on our experience, we know that that is what works; not creating a bureaucratic, superficially attractive, presumed consent system that simply will not deliver what we all want.