Organ Donation

Glyn Davies Excerpts

Wednesday 30th November 2011 Westminster Hall

[Glyn Davies (Montgomeryshire) (Con)]

This is the first time I have served under your chairmanship, Mr Crausby, and it is a pleasure to do so.

I have several brief comments to make before I start on the substance of my speech. First, I must declare an interest, although not a pecuniary one. I am a member of the Kidney Wales Foundation and it is important that I make that clear at the start. I have been interested in this subject for many years because a very dear friend of mine was one of the first to receive a heart and lung transplant at Papworth. She died about two months ago, but for 20 years we discussed the subject on a monthly basis. We did not agree, but our discussions inspired my interest in transplantation as a whole. In particular, we worked on local dialysis provision in Montgomeryshire.

I thought very carefully about becoming involved in a high-profile way because most of my friends and colleagues in the Kidney Wales Foundation take a different view from me. I am not in favour of presumed consent, whereas nearly all of them are. In my view, the way forward is to ensure that everyone knows about the issue so that people’s views are known when they die. Having a public debate is in itself a very good thing to help to achieve the objectives I want.

I think we all agree about the need to increase the availability of organ donors—those who are in favour of presumed consent and those who want to retain the informed consent system. The difference is that I do not believe that presumed consent will deliver an increase in organs for transplant. The evidence tells me that it makes no difference. The reason I sought this debate is that the Government in Wales have proposed to opt for presumed consent, which would inevitably have an impact on the rest of the United Kingdom and makes this a very proper debate for this Chamber.

I must make it clear that my opposition to presumed consent has nothing to do with ethics or morality, though I believe that there is a strong ethical case for opposition to it. Others, including the Archbishop of Wales, have articulated the ethical arguments much better than I can. It cannot be right to interpret the absence of an objection as a considered declaration of support. They cannot be seen as the same thing. Changing the system from an act of giving by the citizen to an act of taking by the state is a genuine ethical consideration, but my opposition to presumed consent is based not on ethics but on efficacy. There is simply no firm evidence that it will deliver any more organs for transplant.

In the final years of the previous Labour Government, the then Prime Minister, the right hon. Member for Kirkcaldy and Cowdenbeath (Mr Brown), began advocating presumed consent, as some hon. Members here may remember. He established a Department of Health organ donation taskforce. I believe that the chief medical officer at the time also supported a change to presumed consent. The taskforce was instructed to examine presumed consent in detail and to provide a report for the Government. The taskforce consisted of a large committee of specialists under the chairmanship of Dame Elisabeth Buggins, with several sub-committees to consider particular issues. Its report, published in 2008, made it absolutely clear that presumed consent was unlikely to increase organ donation rates in the UK and risked diverting substantial resources—it would cost £45 million to establish and several million pounds a year thereafter—from effective solutions. The report is the most comprehensive analysis of presumed consent ever carried out. It runs to several hundred pages.

[Jonathan Evans (Cardiff North) (Con)]

I have a copy of the Buggins report here. Did my hon. Friend take from his reading of it the fact that at the beginning of the process many of the people who were part of the taskforce were strongly in favour of presumed consent, and it was as a result of the detailed work undertaken that their viewpoint came to be changed? That was a crucial part of what emerged from the report and is highlighted in the conclusions.

[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.

[Kevin Brennan (Cardiff West) (Lab)]

As I understand his argument, the hon. Gentlemen is saying that in other countries other measures have worked to increase the level of donation, but he also seemed to be arguing that presumed consent would make matters worse, and reduce the number of organs donated. Can he explain how that mechanism would work?

[Glyn Davies]

I thank the hon. Gentleman for that intervention, because I would not want there to be a misunderstanding. I gave a direct quote from the organ donation taskforce set up by the previous Government, which said that there was no evidence of an increase, and indeed some danger that there might be a negative effect. I used that quote as a challenge to those who are suggesting that the taskforce report shows positive support. I did not suggest that presumed consent will decrease the level of donation.

[Susan Elan Jones (Clwyd South) (Lab)]

It strikes me that the hon. Gentleman is saying that we have a choice – either presumed consent and no awareness-raising, or awareness-raising in the hope that that will generate more organ donation. From our nation of Wales, in the UK, we know that one person a week dies because they cannot have a transplant. I was on the Welsh radio programme “Dau o’r Bae” recently when one of the hon. Gentleman’s colleagues, the Rev. Felix Aubel, was adamantly in favour of presumed consent, and felt that there were very few ethical considerations against. There is quite a diversity of views, but I would contend that there is not the polarity that the hon. Gentleman suggests.

[Glyn Davies]

I thank the hon. Lady for her contribution, but I have not thought of this as being in any way a political issue. I know that there will be members of my party who will take a different view. For me, this is an issue purely outside party politics.

[Paul Flynn (Newport West) (Lab)]

Of the people who died last year waiting for organs, 50 died in Wales, and the evidence from the world experience is that the system being proposed by the Welsh Assembly will reduce that number of deaths. The hon. Gentleman has produced nothing to suggest that that is not the case.

[Glyn Davies]

I thank the hon. Gentleman for his intervention, but I simply do not accept that. The evidence actually shows the opposite of what he has just said, and he is ignoring that evidence. This is an issue of such importance to me—probably the most important issue to me since I have been a Member of Parliament—that I have looked carefully at the evidence. I do not want to be advocating a course of action that in some way negates that evidence, and I do not think that that is what I have been doing.

[Mr Mark Williams (Ceredigion) (LD)]

The hon. Gentlemen has been very careful. He has cited the experience of Belgium and Spain. Would he also cite the experience of the survey held by the Kidney Wales Foundation, looking at 22 different countries, comparing the rates of donation and concluding that presumed consent would increase the rate of donation by up to 30%?

[Glyn Davies]

I thank the hon. Gentleman for that intervention. I referred to Spain because that is the example that all those who seek presumed consent have quoted for many years. I then referred to Belgium because when it was shown that the evidence from Spain did not support that argument, the example then used was Belgium. If there is evidence from 22 more countries, then I will have to see the results from them as well. I just do not accept that the international evidence supports the move to presumed consent at all.

[Jonathan Evans]

I would like to explore this issue for slightly longer. The evidence indicates that what is important is the awareness, not the presumed consent. The Minister, on a point that I hope to raise with her later, wrote to me to indicate that awareness-raising, from just undertaking the taskforce report, has resulted in donation rates increasing by 28% over the last three years. Nobody could say that that is because of the system – it is because of communication and information.

[Glyn Davies]

I am hoping to come to this issue if I have time at the end of my speech. It is a crucial issue. I value the help that the British Medical Association has given me over the years. However, the Parliamentary brief from the BMA, which I referred to before, shocked me a bit; so I have gone to some trouble to understand its position. The BMA agrees with the move to presumed consent, and has done for many years. The position of the BMA is of great interest. It has been a vocal supporter of presumed consent since it adopted the policy in 1998, long before the report of the organ donation taskforce, which was a comprehensive study into the issue.

The BMA’s current position was overwhelmingly endorsed a few months ago at its annual representatives meeting, a very important meeting which was held in Cardiff and attended by hundreds of doctors representing regional groups throughout the United Kingdom and some special interest groups. Many dozens of motions were discussed over three days and votes are taken. A vote of 51% of those in the hall makes what is being discussed policy for the BMA. It seems scarcely credible that an important organisation can make policy on a complex issue in this way—as a sort of public speaking competition, rather than on the basis of detailed research. I do not accept that the BMA’s position on presumed consent can be treated seriously until it reforms the way it makes policy on complex issues. Given the influence of the BMA on public opinion, and that patients’ lives are at stake, there is a powerful moral obligation for it to undertake substantial research into this position before it continues to carry forward an issue that in my view damages the cause that it purportedly supports.

What is the way forward for patients who are at the heart of the debate? I want to come to the positive way forward. We know that the rate of organ donation is influenced by three crucial factors. The first is the number of potential donors. With rare exceptions, potential donors are comatose patients on life support machines in intensive care units. Inevitably, the level of intensive care provision is a crucial aspect of organ donation, and it is relatively poor in the United Kingdom.

That is one factor. Identification of all potential donors is another. Every patient who is a potential donor should be given the opportunity to become a donor, by early identification and discussion with his or her family. The Spanish have an extensive system of transplant co-ordinators, involving mainly part-time intensive care physicians. There is a lesson there for the UK.

Consent from the patient’s family is also key. This is influenced by background knowledge of transplantation and organ donation; the professionalism of timing, as to when we approach the family; trust in the medical profession and knowledge of their loved one’s wishes. Spain has a national training programme for its co-ordinators and a 24-hour information helpline open to the press and public, and places a high priority on public relations.

Consent cannot be legislated for. In 1990, the refusal rates in the UK and in Spain were the same, at about 40%. Over the last 20 years, the refusal rate in the UK has stayed roughly the same. In Spain, it has fallen gradually to the current level of 15%. There is a dramatic difference in what has happened in Spain, as a result of the systems outside presumed consent. That is the example that we should be following.

The second report of the organ donation taskforce recommended improvement in transplant co-ordination, which is being implemented. This is where the numbers I referred to earlier become apparent: the huge 25% rise in the UK and the 60% rise in Wales. It is a fantastic achievement. This is the approach we should be taking forward, which leads me to the final part of my speech this morning.

[Jessica Morden (Newport East) (Lab)]

Does the hon. Gentleman agree that there is a particular problem with organ donation in black and minority ethnic communities? What does he think we ought to do, if we are not aiming for a soft opt-out, to raise the profile of organ donation to tackle health inequalities in these communities?

[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.

[Several hon. Members]

rose—

--- Later in debate ---

[Paul Flynn (Newport West) (Lab)]

This debate reinforces the view that Assembly Members never actually leave the Assembly, but continue their debates here in Westminster. This morning’s debate is not for us. The Government have 400 commitments in the coalition agreement; if they have 401 commitments then there is even less chance that they will deliver on this. There is no likelihood of change.

[Glyn Davies]

I reassure the hon. Member that this issue was never raised during the eight years I served as a member of the Welsh Assembly.

[Paul Flynn]

It is now a live issue in the Assembly. We are not the Assembly, we are a British Parliament, and I question whether this is an issue of primary concern. Of course we should talk about it, but sadly any possibility of reform is remote in this Parliament, although it is a live issue in Wales. This debate has been called in order to influence the debate in Wales and it is questionable whether it is a legitimate use of parliamentary time.

--- Later in debate ---

[Mr Williams]

The hon. Member for Newport West (Paul Flynn) also spoke with characteristic passion, and he spoke with passion about constituents, which is an important point to make. Another important point to acknowledge is that this is not a partisan issue. I happen to support the stance taken by the Welsh Assembly Government. It is not a Government that my party is part of, but I support the initiative of both Health Ministers in the Assembly, who happen to be Labour Members.

I will briefly explore the Assembly Government case and endorse the work of the British Medical Association. I will also highlight the work of the Kidney Wales Foundation, the British Heart Foundation, Diabetes UK Wales, the British Lung Foundation and the Kidney Welsh Patients Association.

[Glyn Davies]

Will the hon. Gentleman give way?

--- Later in debate ---

[Kevin Brennan (Cardiff West) (Lab)]

This is a political issue. It may not be a purely party political issue, but it is a political issue, because ultimately it is decided by politicians. If a similar proposal were introduced for other parts of the United Kingdom in this House, it would probably be whipped by the Government, who I imagine would take a political position on the issue. That may or may not be the case, but whether or not the issue is party political, it is political because it is about life-and-death matters affecting our constituents, matters that are ultimately decided by politicians. That is our duty and we should not give politics a dirty name by saying it is not a political issue, because politics is important—often, it is a life-and-death matter—and this is one example.

I listened carefully to the arguments of the hon. Member for Montgomeryshire (Glyn Davies). I absolutely accept that he is entirely sincere in making those arguments and that he has considered the matter very seriously. I know that, through a close friend, he has personal experience of the issues involved. I also know of his work with the Kidney Wales Foundation, a charity that is located in my constituency and has done such sterling work to move the issue up the agenda in Wales and to help develop the proposal brought forward by the Welsh Assembly Government.

However, I struggle to understand the logic of the hon. Gentleman’s position. He appeared to be saying something with which we can all agree—that increasing the levels of organ donation will not simply happen through a proposal such as soft presumed consent and that other things could and should be done to increase organ donation. As he rightly said, the very fact that the previous Prime Minister raised this matter from the top and generated a taskforce and a debate has helped to improve organ donation, in the same way that the Alder Hey scandal had the opposite effect on rates of organ donation in the past decade.

There are things that can be done. One study cited in the science section of the Library’s note, which hon. Members may have read, stated that the four main factors for high donation rates are “an opt-out policy”, which we are here to debate, and

“a large number of transplant centres…a high percentage of the population enrolled in university education…and a high percentage of Roman Catholics”.

That may explain the sanctimonious hyperbole of the Archbishop of Wales on the issue. He may want to reconsider the position that he has taken and to consult some of his ecumenical colleagues in other parts of the Christian faith.

The reason why I struggle with the logic of the hon. Member for Montgomeryshire is that he said that his objection was not ethical. We do not therefore have to deal with the issue of whether the proposal is an imposition by the state, which should not in any way presume anything about what should happen to the organs of someone who has died. He said at the outset of the debate that his objection was not on such grounds; he said that he wanted to cite the evidence. When I asked him whether he thought such a soft organ donation proposal would make matters worse, he said that a line in the taskforce report stated that that was a possibility, but that that was not his position and that he was not arguing that a proposal for soft organ donation would make matters worse. At the very least, all the proposal would do, according to his own argument, is make things no better. Yet he accepts that, by raising the debate and the issue, organ donation rates are likely to increase.

My argument is that the proposal is not a significant imposition on the individual human rights of people, because it is soft organ donation. In practice, what would happen is that, when an organ becomes available, it will be presumed that the donor had consented but there is still the safeguard that the relatives of that donor have to be consulted. All that would change would be the nature of the question. It would no longer be, “Your loved one did not carry a donor card and did not indicate consent before this misfortune befell them, would you agree to their organs being donated?” Instead, the question would be, “As you know, in this jurisdiction it is presumed that consent is given unless somebody opts out, and therefore we intend to proceed unless you decide to veto that process.” That is the difference. In my view, logic tells us that, in those circumstances, it is likely that more organs will be donated. Even if that was not the case, and even if, as has been said, it made no difference whatever, are we not right to try?

I believe that the proposal will be a success, and we should try it. This is the advantage of devolution: it is possible for the proposal to be tried in one part of the United Kingdom just as the smoking ban was tried despite massive objections from all sorts of people. That proved a huge success and the ban was adopted in other parts of the United Kingdom. I think the same will happen in this instance.

[Glyn Davies]

I accepted in my speech that the proposal in Wales may have triggered my debate in some way, but this is an issue for the United Kingdom. We have all spoken about a situation that needs to be improved, and that needs to happen across the United Kingdom. That is what today’s debate is about.

[Kevin Brennan]

Indeed, and I accept that. As I just said, I believe that the proposal in Wales will, eventually, lead to an improvement right across the United Kingdom.

On the constitutional point, the Welsh Government have taken legal advice and believe that they have the necessary jurisdiction to undertake the reform. If the United Kingdom Government and their legal advisers do not believe that to be the case, how should the Welsh Government react? I will tell you, Mr Crausby: they should react by making sure that they make any necessary changes to ensure that it is absolutely clear that the Welsh Government have the necessary jurisdiction to make that reform. Otherwise, we are heading for an unnecessary constitutional crisis. I hope that the Under-Secretary of State for Health will make the issue clear when she replies to the debate.