Organ Donation

Jonathan Evans 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.

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[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.

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[Mr Williams]

I am not going to give way to the hon. Gentleman. I will proceed because many others want to speak.

Members of the Select Committee on Welsh Affairs received the request for legislative competence on this matter, although mercifully that was superseded by the referendum result, which conveyed greater powers to the Welsh Assembly. That is why it is now able to proceed in the legislative way that it is. The debate has, of course, been triggered by the publication of the White Paper by the Assembly Government on 8 November, which proposes a soft opt-out organ donation scheme for Wales, with a view to that becoming fully operational in Wales in 2015. Both contributions we have heard this morning have acknowledged the tragically large waiting lists for donors: 10,000 people UK-wide, 500 in Wales. The wider public support was acknowledged by the hon. Member for Montgomeryshire.

It was also acknowledged that earlier committee work had been undertaken in the National Assembly, and the committee was not exactly ringing in its endorsement of a soft opt-out proposal, although it did not rule that out. The then Health Minister opened the matter to public consultation, and some 81% of respondents in 2009 indicated that they were supportive of a soft opt-out scheme.

Despite those statistics and the overwhelming public approval for a scheme, tragically only 29% of us have signed up for organ donation. There has been much mention of the international comparisons. I will not dwell on them, other than to cite again the comparison highlighted by the Kidney Wales Foundation. It looked at 22 different countries with opt-out schemes—not just Belgium or Spain—and found that over 10 years there was a 25% to 30% higher donation rate than for informed consent schemes. I appreciate what has been said about an evidence-based scheme, but we must not be selective in the evidence used. That is critical—we need to look at the whole picture.

I strongly contend that a soft opt-out approach must not be seen in isolation. The Assembly Government is not arguing that a soft opt-out scheme alone will work and do the job that we all wish to see. As the hon. Member for Llanelli (Nia Griffith) said in her intervention, we need to heighten publicity, which is absolutely critical. Initiatives such as the use of the Driver and Vehicle Licensing Agency, so that when people apply for a driving licence they are asked whether they wish to join a scheme, would play an implicit part in a soft opt-out scheme.

[Jonathan Evans]

Will the hon. Gentleman give way?

[Mr Williams]

I will carry on, because I am conscious of time.

Critically, the Assembly Government has also responded to the need to increase infrastructure to cope with transplants. It is clearly developing that: the transplant directorate of the University hospital of Wales in Cardiff is the only transplant organisation responsible for kidney and pancreas transplantation in south and mid-Wales. In March, £2.4 million was spent on the Cardiff transplant unit, which has been opened with a dedicated transplant team and with new recruits of surgical and nursing staff. The Assembly Government also committed £1.5 million to implement the recommendations of the organ donor taskforce. Infrastructure and public information, coupled with a soft opt-out scheme, is the key.

Finally, and critically, we need to address the ethical issue. The soft opt-out scheme has been described as somehow being ethically improper. I think that is probably the view—I hope I do not do him a disservice—of my hon. Friend the Member for Montgomeryshire. That view has certainly been expressed by the Archbishop of Wales. I would not dare to describe him in the glowing way that the hon. Member for Newport West did; I am a member of his Church, and I deeply respect the Archbishop of Wales. He has highlighted the issue of the relative power of the state and the individual.

As a Liberal—call me an old-fashioned liberal—I very much want to see the emphasis on individual choice. The hon. Member for Clwyd South (Susan Elan Jones) alluded to that point in her intervention. There will still be choice—the choice to opt into a scheme is still there. The archbishop’s article in the Western Mail stated:

“Organ donation…ought to be a matter of gift. If one takes organs without consent, on the assumption that a person is tacitly assenting by not opting out, then that is no longer a free gift to others. An organ donation ought to be precisely that…an act of love and generosity.”

I agree with those sentiments, but I do not accept that opting out in any way conspires against the spirit of generosity. That is where public information and the awareness issue are so important.

What we need to do, which is what the Assembly Government seek to do, is to extend that spirit of generosity so that it becomes the norm and so that the discussions that every family will have to have throughout people’s life about such matters are very much the reality. That puts the onus on the individual to make informed choices, and that should be highlighted. A point has been made about relatives and members of families. The soft opt-out option means—this has been made open to consultation by the Welsh Government—that there is a specific role for members of bereaved families, whose views will be taken into consideration.

I perhaps started this process as an intuitive supporter of soft opt-out. I remember going to a meeting organised by the hon. Member for Cardiff West (Kevin Brennan) earlier this year, when we met people who were waiting for transplant operations. There is a healthy impatience, certainly in the Assembly Government and among others of us, to see the issue resolved.

The hon. Member for Newport West talked about his constituency cases. One benefit of the House rising early yesterday was that I was able to watch a little more television than usual. I watched an excellent documentary last night about a young couple from Exeter: 21-year-old Kirstie has been waiting several years for a lung transplant. She struggled through her teenage years, and she even struggled through her wedding day while being unclear whether she could actually survive the day. The highs and the lows—the highs were that on two occasions she received telephone calls saying that a donor was available; the lows were realising that the donor was not appropriate. Miraculously, as she reached the end of her life, a suitable donor was found, and Kirstie is now recovering and enjoying an increasingly full life. Sadly, many of our constituents are not so lucky, which is why many of us are very impatient and why the National Assembly Government have taken the lead in pushing for a soft opt-out option.

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[Jonathan Evans (Cardiff North) (Con)]

I am grateful to be called, Mr Crausby, and I shall be brief.

First, I should like to place on record my thanks to Mr Max Gabe Wilkinson, my former neighbour, who was the founder of the Kidney Research Foundation in Wales. More than 30 years ago, he signed me up to a donor card. I can say to the hon. Member for Newport West (Paul Flynn) that, as the vice-president of the Catholic Union of Great Britain, I have been a declared donor ever since, and therefore this is no prelatory speech.

My concern is to maintain the integrity of organ donation, and confidence and trust in the system. In context of UK policy and its impact on what is happening in Wales, my remarks today will be limited to what has happened in trying to promote more organ donation through the DVLA website. As part of a policy that applies to all of the United Kingdom—the Minister is aware of my concerns because I have written to her—it is legitimate to say to people, “Do you wish to opt into organ donation?” That new system has been in operation since 1 August, but in Wales, there is no capacity to say no. My hon. Friend the Member for Ceredigion (Mr Williams) put his finger on it when he said that there should be the option to say no. The Minister has helpfully written to me to say that there does not need to such an option because people can change their minds and decide to opt in later on. But if we are to have two separate systems, the option in Wales, as one of my constituents has written to me to point out, is that one cannot opt out if one is proceeding to declare a viewpoint on the DVLA website. Therefore, ultimately, if legislation is introduced in Wales—I am not expressing an opinion as to whether that legislation should be passed or not—there would have to be a different approach. Otherwise, one fundamentally undermines people’s ability to be confident that if they want to opt out, they can say so. They cannot exercise that choice on the current DVLA website.

Why is that important? It is important because we need to maintain that trust, and at the same time maintain the legal integrity of the system. Although it has been said that everything will be fine, and never mind about the legal competence, the issue relates to the position of the European Court of Human Rights. In the event of something going wrong, heaven forbid, we could end up with a negative situation in which the process that is adopted in Wales fundamentally undermines confidence in organ donation altogether. Those factors need to be in Ministers’ minds, and that is why I wanted to make a brief contribution to the debate.

[Several hon. Members]

rose—