Members will remember the good debate that we had back in March, after the organ donation task force published its first report, "Organs for Transplant". In its second report, "The potential impact of an opt out system for organ donation in the UK", which was published last month, the task force looks at the impact of a move to a system of opting out as the basis of organ donation. It is important and appropriate that the Parliament should have the chance to discuss its findings.
Those of us who are in favour of opting out and those who are against it hold strong views on the issue. However, it is important to stress at the outset that the difference of opinion is on the "how" of addressing the growing shortage of organs for transplantation. I believe that there is now a strong consensus on the urgent need to increase the rate of organ donation substantially and for politicians, the national health service and the general public to give that a greater priority than ever before.
In the time that is available to me, I will set out briefly the gist of the task force's thinking on opt-out, after which I will say what we are doing to bring about a doubling of Scotland's organ donation rate in the next five years.
In its second report, the task force makes it clear that its recommendation not to move to an opt-out system at this stage rests on a very finely balanced judgment. The report begins by pointing out the apparent correlation between higher donation rates and having an opt-out system. For example, the high donation rate in Spain is often presented as a direct result of that country's system of opt-out. However, Dr Rafael Matesanz, who was the architect of many of the changes that were made in Spain, was explicit in his evidence to the task force that presumed consent, or opt-out, is not the reason for the success of the Spanish system; donation rates started to go up only when changes were made to the transplantation infrastructure, not when the law was changed.
The report is also clear that there are no fundamental legal or ethical barriers to the introduction of a soft opt-out system, in which family members would be consulted about donation. A majority of the public—60 per cent—
Significantly, some health professionals told the task force of their concern about the potentially negative implications that a move to opt-out could have for clinical practice. There was a suggestion that if opt-out were to be introduced, some intensive care practitioners might themselves opt out of participation in donation programmes. That is of concern, particularly given that so many of the task force's original recommendations depend on the co-operation of those practitioners.
For all those reasons—and more that I do not have time to go into—the task force felt that the issue was finely balanced. I was struck by its comment that, at the outset, its members held a variety of views but that, after hearing all the evidence, they reached consensus on the view that, on balance, although moving to a system of opt-out might deliver real benefits, it carries a significant risk of making the situation worse in the short term.
I welcome the task force's second report, which is a thorough and important piece of work that brings much-needed clarity on the advantages and pitfalls of moving to an opt-out system. The decision is finely balanced and I make it clear today that I remain on the side that is sympathetic to an opt-out system, but I have always said that I will be guided by expert opinion on such a sensitive subject, which is why I have indicated the Scottish Government's acceptance of the report's recommendations.
I also make it clear that, in my view, opting out is not off the agenda. The situation will remain under review. I accept as a starting point the task force's recommendation that opting out should be formally reconsidered in five years. However, if at any time between now and then it becomes clear that progress is not being made fast enough, it is open to Parliament to bring such a review forward. The current key issue is about how much steady progress we can make between now and 2013 on driving up our donation rates.
No, I am not minded to accept it, although I will listen to the debate. It is important that we accept as a starting point the task force report's recommendation that, as things stand, we should take five years to do the other things that we need to do and then formally reconsider the situation. That is my position right now. If, in a year or two from now, progress has not been made, I will not rule out bringing forward the review. However, it is important for us to say that we accept the recommendation.
I want to move on to what we are doing to achieve success, because that is at the heart of the debate. The first step is to have a shared understanding of what success will look like. It is clear to me that the objective must be to more than double the organ donation rate in Scotland. I have given a commitment to ensuring that the resources are available to meet that challenge. At present, we have approximately 50 deceased donors per year, or just under 10 per million of population. Across the United Kingdom, the target is to make that figure rise to 24 per million of population, which would take us to 120 donors a year in Scotland.
It is obvious from the evidence that was heard by the Health Committee in the previous parliamentary session and from the evidence that was taken by the task force that in Spain, for example, the key is having specialists in every major hospital, which needs resources. The cabinet secretary has mentioned resources, but could she give us an assurance that they will be directed in that way?
If the member will bear with me, I will go on to talk about the specific issues that we have to deal with.
Our big advantage in Scotland is that we know that the majority of people would want their organs to help to save someone's life, so we must translate that willingness into names on the organ donor register and into donors.
This year, for the first time, we used television advertising to bring the kill Jill adverts to a mass audience. Indeed, on the day on which the report was published, the chair of the task force commended that campaign as good and effective publicity. We are considering carefully whether we should continue with that approach, or whether there is a more effective angle that we could adopt.
People also told the task force that they feel that the wishes about donation that they express in life should be respected after their death. That is the basis on which our current legislation rests.
However, we need to do more to make people aware of their rights under that legislation. We are therefore commissioning an information leaflet on people's rights under the Human Tissue (Scotland) Act 2006, which we will make widely available in places such as general practitioners' surgeries and pharmacies.
We are also making good progress in Scotland on implementing the recommendations in the task force's first report that are to do with breaking down the barriers to donation. We have appointed a lead clinician for transplantation in Scotland, John Forsythe. As well as being a highly respected transplant surgeon, he chairs the Scottish transplant group, which I asked in January to oversee implementation of the recommendations in Scotland. As part of the process of making donation a usual event, as opposed to an unusual one, John has been giving presentations to NHS board chairs, chief executives and medical directors about the recommendations that we need their help to implement, and they are all very supportive.
We are in the process of establishing a committee that will be responsible for organ donation in each mainland NHS board area and have started to appoint clinical donation champions in each of the hospitals from which most of our donors come.
We have already increased the number of donor transplant co-ordinators in Scotland, who will be embedded in donating hospitals to improve links with the critical care team. That will help to ensure that in all appropriate cases, discussion about donation becomes a routine part of end-of-life care. We have flagged up that issue in "Living and Dying Well", our national strategy for palliative and end-of-life care. In addition, the employment of co-ordinators will be transferred to NHS Blood and Transplant so that they have a recognised career structure and can develop as part of a team.
We are investing more in the commissioning of the arrangements for organ retrieval. We need self-sufficient retrieval teams that minimise the disruption to the other work of the hospitals when donation takes place.
Altogether, we have identified expenditure of more than £5 million over the next three years so that Scotland can contribute to the step change that we need to make. There is strong evidence from Spain and elsewhere that intervention at national Government level can shift organ donation rates from low to high levels. We must learn from the experience of countries such as Spain and introduce arrangements that are in line with those that have proved extremely successful elsewhere.
For some time, there has been general recognition that we must increase organ donation rates if we are to avoid the tragic and deplorable situation in which people die while waiting for organs. That is why it is time to act. In the words of John Forsythe, it is time to do the hard miles that will deliver the improvements that we all want to see. Although I am sympathetic to opt-out, I have never believed that it would be a panacea. We would need to do the hard miles on infrastructure regardless of the decision on opt-out. That must be our focus for the foreseeable future, bearing in mind that if we are not as successful as we need to be, we should reconsider the position on opt-out. That is the right way forward, and it is a sensible approach. I hope that members will show the enthusiasm that I know everyone has to improve the situation on organ donation, and I encourage all members to support the motion in my name.
That the Parliament accepts the recommendations in the second report from the UK Organ Donation Taskforce and notes in particular that the move to a system of opt out should be reviewed again in five years' time in light of the progress with implementation of the recommendations in the taskforce's first report, which are designed to remove existing barriers to donation, and that, in light of the growing shortage of organs for transplantation, Scotland should, within the existing legislative framework, take all possible steps to almost double its number of organ donors, as our contribution to the challenge of increasing organ donation rates across the United Kingdom from the present level of 13 donors per million population to 24 donors per million population by 2013.
I welcome the opportunity to have another debate on organ transplantation—our most recent debate on the topic was in March—in the light of the publication of the organ donation task force's second report. I do not want to reiterate everything that was said in the previous debate, but a few things are worth repeating on the record.
The organ transplantation programme has been extremely successful over the past 50 years. It began with kidneys, but has been extended to include heart, heart and lung, liver, pancreas, bowel and cornea transplants. The number of organs that are being donated is gradually increasing. Thousands of lives have been saved and release from dialysis has transformed the lives of many people, because although dialysis is an excellent treatment, it ties people to machines for long periods.
As we know, about 3,350 transplants are carried out each year, but 1,000 people die waiting for a transplant. There are 7,600 people on the waiting list, 698 of whom live in Scotland, but we know
The number of people who join the list has been rising by around 8 per cent per annum, but we face future challenges. As I have mentioned, the number of organs that can be transplanted is likely to grow. There are three additional challenges. The population is ageing and survival rates from earlier insults are better, with the result that people might seek transplants in their 60s and even their 70s. The increasing prevalence of type 2 diabetes will mean increasing levels of kidney failure. It is estimated that 20 per cent of hepatitis C sufferers might need liver transplants. The liver transplant situation has worsened over the past few years.
Although organ transplantation has a proud history of innovation and success, the level of organ donation has been poor and is getting poorer. We are sinking down the table. Even though a Health and Community Care Committee report that was published in 2000 and for which I was the reporter made many of the points that are set out in the task force's report, our progress over the past five years has been negligible. Indeed, over the past six years, the number of cadaveric donations has declined. Of course, that is partly due to fewer fatalities through improved road safety, but that cannot be the whole answer. Since 1990, cadaveric donations have declined by 25 per cent. In contrast, in the time that our donations have stayed static or declined, Spain has substantially increased its level of donations to the highest in the world at 35 donors per million.
The only thing that my amendment seeks to do is to remove the Parliament's tie to a five-year waiting period before a review is carried out.
I hope that I have explained that we should not consider ourselves as being tied. I should point out that, taken literally, Dr Simpson's amendment removes any commitment to any review. I do not think that that is helpful. Does he not agree that we need such a commitment, bearing in mind that it is always open to Parliament to bring forward a review, if that is deemed necessary?
I know that we have all been very busy over the past week, but it would have been better if we had been able to sit down and work out a common approach. I do not want to be tied to a five-year waiting period before any review takes place; I think that a review could be carried out earlier than that. I realise that the cabinet
The main reason for my approach is that, at 9.6 donors per million, the figure for Scotland is much worse than that for the rest of the UK, which stands at 13.4 per million. We might well need to address the problem earlier than the rest of the UK just to match what is happening there.
There is no whip on this vote and I remain very open minded on this issue. However, I respectfully suggest to Richard Simpson that, given the cabinet secretary's comment that it will be for Parliament to decide whether to have an earlier review, he consider as the debate proceeds whether he should press his amendment. I hope that the Parliament will support the motion unanimously but, in light of the cabinet secretary's remarks, the amendment raises a number of difficulties.
The cabinet secretary has put her personal views on the record, but she might not always be in that post.
Labour members, too, will have a free vote in this debate and I do not know what is happening in the other parties, so we will see what the Parliament decides. I simply do not want the Parliament's hands to be tied on this matter.
In the Scottish context—[Interruption.] I am sorry, Presiding Officer—I dropped my speech because I was getting excited.
You are quite right—I will just tear that page out.
In its 2000 report, the Health and Community Care Committee highlighted a number of ways of extending organ donor registration; for example, GP registration forms, council tax forms, voter registration forms and other application forms could be used. Has the cabinet secretary considered any such measures?
In the Ochil constituency, Gordon Banks MP has been running an organ donor registration campaign in the Alloa and Hillfoots Advertiser, and a similar campaign has been running in the Fife Free Press. I wonder whether the Government could find some way of stimulating local campaigns in order to increase registration.
In the organ donation debate in March, the cabinet secretary indicated that she would take up
I have said before—and it is worth repeating—that the problem with the current system is that the refusal rate, which stands at 40 per cent, is still very high. That figure has not changed very much, even though we know that, when they were asked a year later, the majority of families regretted making that refusal.
I noted the cabinet secretary's words carefully, and I agree with what she said. We cannot be in any way patronising to people; we cannot simply say that the professionals know best and are going to take the organs. I have never suggested a hard system of presumed consent.
It would be excellent if we could come up with an alternative term—some people have been talking about an opt-out system.
Out of the 27 European Union countries, 19 now have presumed consent. Seven of those 19 are opting for a hard system—with which I do not agree—and the other 12 for a soft system. A fact that we cannot get round is that eight out of 10 of those countries are represented among the countries with the highest donation rates. That may be for various reasons, but I imagine that presumed consent is one of them.
The other pitfalls that the cabinet secretary has referred to are very important. Have we clarified totally the situation in Scots law with regard to non-beating hearts? That will be important in improving the number of donations. The Human Tissue (Scotland) Act 2006 went some way towards clarification, but have we clarified all the other Scots law issues?
I will go through some specific recommendations from the report in the brief time that I have left. I am sure that we can agree on the need for a UK-wide organ donation organisation. However, should it come under the NHS Blood and Transplant system in England? Should it not be a separate UK system if the issue is serious enough to merit its own establishment?
I welcome the appointment of John Forsythe as a national champion, and the establishment of clinical champions locally in each hospital, which was another recommendation. I also welcome the fact that we will have a better organ retrieval system, which will clearly be important.
I welcome the £5 million expenditure but, if it is Shona Robison who sums up, I hope that she will say how the money will be distributed to hospitals to remove the financial barriers in each board and hospital. Our 2000 report suggested that there were significant barriers. We need to be able to encourage individuals. Will the £5 million cover the costs of transplant co-ordinators in every hospital? Will it cover an increase in the transplant unit capacity in Scotland? That will be necessary if we are successful in increasing the number of transplants that we undertake. Will it also get rid of the barriers to retrieval, and create the independent retrieval team to which the cabinet secretary referred?
The figures for black and minority ethnic communities are startling. I hope that the cabinet secretary will consider a specific education campaign on the promotion of transplants among those communities.
I move amendment S3M-3124.1, to leave out from second "the" to "which" and insert:
"those recommendations of the reports of the UK Organ Donation Taskforce that"
I welcome the Cabinet Secretary for Health and Wellbeing's speech and her confirmation that she will review progress in the next one or two years. That will be important.
As I have said in previous debates on organ donation, the Scottish Conservatives have agreed to a free vote on the issue. Therefore, the views expressed from this side of the chamber are personal to each speaker and are not part of the collective view of the Conservative party.
Like the task force members, the more that I have examined the evidence for an opt-out system, the less obvious I have found the benefits for addressing the shortage of potential transplant donors to be. I very much support the main principles of the task force's report, and I congratulate the task force, and the health secretary, on dropping the words "presumed consent" from the title and on the accurate use of the words "opt out system".
I hope that I will now make this point for the final time, because I do not think that the concept of "presumed consent" has totally gone yet. Presumed consent is not consent. To consent means to agree or to give assent. Consent—whether to sex, marriage or the giving of body parts—cannot be presumed; it can only be given freely by an individual.
Likewise, a donor is a giver. Donation is an act of choice. Whether financial or otherwise, a
My second point was mentioned by Richard Simpson, but is worth repeating. Diabetes is the main contributory factor to kidney failure. We should not lose sight of early diagnosis and management of diabetes, but we must also put more emphasis on the prevention of diabetes.
In previous debates, I have also raised the issue of trust between clinicians and families, and I further agree with the task force that an opt-out system of consent might undermine that concept.
As the Cabinet Secretary for Health and Wellbeing said, the system that is used in Spain is often cited as the preferred system. However, those who continue to argue for the system that they call presumed consent can no longer be in any doubt that what made a difference in Spain was not the opt-out system that was introduced in 1979, which had little or no impact on transplants, but the action that the Spanish Government took 10 years later when it invested in specific training for health care professionals and appointed donor transplant co-ordinators in every intensive care unit. I also point out that Spain has three times as many intensive therapy beds and transplant doctors as the United Kingdom.
There is a further point that is often missed in debates on organ donation. In Scotland, we still do not know how many people would have been willing to donate organs but were not asked to do so or could not do so because the organisation and co-ordination of retrieval were lacking or there were insufficient intensive therapy unit beds. In that respect, I welcome the £5 million and the increase in donor co-ordinators that the cabinet secretary announced today, although much more needs to be done.
There were only 20 more transplants in the UK last year than in 1999. Although I support the cabinet secretary's motion on organ donation, I want not only an increase in the number of donors but an increase in the number of transplants. However, unless there is considerable investment, that simply will not happen.
I agree with Mary Scanlon. I ask her to acknowledge that that is why we have set a target to double not the number of people on the register but the rate of donation. She is absolutely right. Per head of population, we have more people on the register than other parts of the UK, but our donation rate is lower.
I will come to that. If we are to be successful, we need two measurements—not just the number of people who are willing to
I was surprised to read that the number of cardiothoracic transplants reduced by 14 per cent last year and that there was an 18 per cent reduction in heart transplants and a 10 per cent reduction in lung transplants. I ask the cabinet secretary whether people who live in Orkney, Shetland and the Western Isles are given the same opportunity to donate and receive organs as people in the rest of Scotland. It has been raised with me that people in Shetland might be unable to donate, despite their wishes, because of the time, resources and distances involved, but also that they might be unable to receive organs. I ask the cabinet secretary to look into that.
I support the task force's view that a system of presumed consent
"would distract attention away from essential improvements to systems and infrastructure and from the urgent need to improve public awareness and understanding of organ donation."
Further, there is not much point in increasing the number of donors unless the system is in place to make transplants happen.
I share with everyone in the chamber a commitment to increase the number of registered organ donors. The issue is complex and I welcome all the work carried out by the organ donation task force.
I am somewhat hesitant to join the dance on the head of a pin over Richard Simpson's amendment. I saw it rather differently from the cabinet secretary and Christine Grahame. Given that, after carrying out a whole body of work, the organ donation task force concluded that introducing what we will call temporarily an opt-out system is not to be contemplated at the current time, if one wants to increase donation levels, one has to refer to all the work and all the reports. There is nothing illogical in calling on that progressive body of work so I see no particular difficulty with the amendment.
There is no question but that the latest task force report spells out in various conclusions, to which previous members have referred, that an opt-out system should not be introduced at the present time. The conclusions point to the complexity of the situation and, perhaps more important, to the potential to undermine the concept of donation being a gift, to erode trust in NHS professionals and the Government and to impact negatively on organ donation numbers. As Mary Scanlon said, that would distract attention from the essential improvements to systems and
The most recent task force report makes two further interesting points. I share Mary Scanlon's opinion that the use of language about organ donation has been profoundly unhelpful. I do not find helpful the use of the term "opt out" as opposed to "presumed consent". However, I am more concerned about what the report has to say about securing consent. I certainly share Mary Scanlon's opinion that according to ordinary usage of the English language, "consent" means taking active steps to accede to a course of action. Therefore, if someone presumes what course of action an individual should take, as posited in the case of organ donation, it follows that the individual has not given their consent. The whole thrust of all the task force reports is concerned with obtaining consent and ensuring that all sides accept it. Like the cabinet secretary, I found it instructive that the task force heard support from members of the public and patient groups for the principle of informed consent on the part of donors.
Further, the clinical working group heard powerful evidence from organ recipients who stressed the need to know that organs had been freely given by the donors and their families, and from donor families who often find great comfort in taking an active part in the decision to donate.
This Parliament tried hard to assist the consent process through some of the provisions passed in the Human Tissue (Scotland) Act 2006. Section 6 of the act provides expressly for adult authorisation that ought to give legal force and effect to the decision of any person who elects to join the donor register. However, as we all know, for many of the reasons stated in the task force reports, the absence of explicit consent from relatives effectively renders those provisions inoperable. That is challenging for us all.
The two key questions that emerge in relation to our trying to increase the level of donor donation are how we persuade more adults to grant authorisation in the first instance and, secondly and crucially, how we persuade relatives to accept the validity of consent that has been given freely.
The report of the task force in January this year set out the framework, with 14 specific recommendations for how to increase donor rates
I am quite clear about the willingness and the wish of all members in the Parliament to increase the number of people who register as donors and, therefore, the number of transplants that can take place. We all acknowledge that we must address the issues of what consent is, how we obtain it and how we persuade relatives of people who have given consent that they did so freely as adults, so their wishes must be respected.
I, like others, welcome the cabinet secretary's announcement of £5 million over three years for various measures to increase organ donation and intervention, and I welcome what she said about the processes and infrastructure arrangements.
On the five-year review, I will wait to hear what the cabinet secretary has to say about the Labour amendment. I think that it is unnecessary, given what has already been said and given that it is always open to Parliament to review the process at any stage, such as by lodging a motion to do so. The five-year review was part of the conclusions of the independent report; that is why it has been included.
I thank Richard Simpson for reminding us about those who die while they are on waiting lists. They are all individuals with families and friends who have lived in hope for far too long.
I note what Richard Simpson said about slow progress and the work that was done earlier. However, I believe that momentum is growing, simply because the Parliament has been debating the issue more often. I took part in Lord Foulkes's members' business debate on the issue.
It was important to await the independent report that we now have before us, so that we could have a dispassionate look at some of the issues. Everybody wants to have more people on the donor list and everybody wants people to be more
I found the conclusions of the report extremely interesting, particularly paragraph 15.2, which states:
"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."
I have always felt that that was the case. If there was a simple answer, it would have been delivered. The issue is complex.
The British Medical Association's position on what it calls a
"'soft' system of presumed consent"—
I do not particularly like either of those terms—is that it
"acts as a safeguard—families may be aware of an unregistered objection to donation. Secondly, it recognises doctors' duty of care towards relatives to relieve, and not add to, their distress in bereavement."
The second point is terribly important. We are not talking about people who are neutral or objective; we are talking about a highly personal, emotional situation for families, who are vulnerable. They might have had a view previously, but when they face the death of a loved one, they are in turmoil. The situation must be dealt with terribly delicately, and I look forward to the publication of guidance on how to talk to relatives in the appropriate manner. I imagine that many of our professionals do not really need such guidance, but it will not do any harm.
In the members' business debate, I quoted at length someone whose views should be listened to—Ian Grant, a consultant surgeon at the Western general hospital, in Edinburgh, who deals with situations in which he has to approach the families of people who are brain dead or on the point of dying. He said:
"It is also unthinkable that a dead patient's organs would be taken without family agreement, and hence discussion with the deceased's family after brain-stem death will need to continue as before. It is vital that this discussion is informed by accurate knowledge of the patient's wishes expressed before death. This can only be guaranteed by a compulsory registration of patients' wishes, whether for or against donation"
That is important, and picks up Mary Scanlon's point that organ donation is a gift. We should have a voluntary register—a compulsory register may be a step too far—to assist friends and relatives, who may not know what to do. Then they would have before them the deceased's wishes either for or against donation to help them to determine
Ian Grant continued:
"I write as a senior intensive care clinician with almost 30 years experience of dealing with brain-stem death and organ donation, and who strongly supports organ donation and transplantation."—[Official Report, 24 January 2008; c 5558.]
Those are wise words.
Having dealt with consent, I will develop the definition a little more. Not only must consent be clearly and freely given, as well as being informed, but the individual must have the capacity to know what they are consenting to. If we went down the route of consent being silence, we might discover only after the event that a person whose organs had been donated did not have the capacity to give their consent, which would be outrageous.
I am in two minds about Richard Simpson's amendment. Frankly, I do not think that we need it, although I am hesitant about voting against it. I may have to abstain in the vote, although I do not like abstaining—it is not in my temperament. I do not think that it was helpful of Richard Simpson to lodge the amendment.
I conclude on this point. In the debate, we must remember that while we talk about statistics and about increasing the rate of donations to 50 per cent from 30 per cent, really we are talking about the individuals on those interminable transplant waiting lists who would get the most precious gift of all—not just at Christmas but at any time—of having their life extended. Whatever we can do to assist that, keeping in mind the legalities surrounding consent and so on, will be to our credit.
I, too, welcome the debate, although I have one reservation to which I shall return later. I apologise for having to leave for part of the debate, due to an engagement that I had arranged previously.
I join in congratulating the UK organ donation task force on producing an excellent report that provides a number of welcome recommendations that will improve organ donation services and the rate of organ donation throughout the United Kingdom. Although I welcome the task force's recognition of the importance of improving organ donation rates, like other members, I am disappointed that the report does not also recommend that we proceed straight away to an opt-out system—that is the phrase that I shall continue to use—for organ donation. I believe that there is a strong argument for that, which I shall make.
The number of people who are on the transplant waiting list in Scotland currently stands at 818. In September 2005, it was 695; so, it is growing. Yet, in 2007, only 271 organ transplants took place. In the Lothians, 135 people are waiting for an organ transplant and, according to the Department of Health, one person dies every day in England due to failure to find a suitable donor. That is the context for the debate.
Every year, people die needlessly while they are waiting for a donor organ. Evidence from many other countries has shown that an opt-out system can address the shortage of donor organs and save lives, and public opinion research in this country has found growing support for a change to the system. More than 60 per cent of people are in favour of an opt-out system—with safeguards, of course.
I read with concern and growing disbelief the report's finding that there was no convincing evidence to suggest that an opt-out system would deliver significant increases in the number of donated organs. We simply must consider what happens in other European Union countries—forget about what happens beyond the EU. Nineteen EU countries operate an opt-out system. It has been said many times that Britain's organ donation rate is substantially lower than half the organ donation rate in Spain. I accept that the rate in Spain is produced by a combination of having the necessary infrastructure and an opt-out system, but the opt-out system contributes. Britain has achieved an organ donation rate of only 12.8 per million compared with Spain's 35.1 per million. What other evidence is needed?
"The BMA is disappointed by the taskforce's findings."
He said that an opt-out system together with
"sufficient surgeons, intensive care beds and transplant co-ordinators" was needed. He spoke about a combination of things, just as there is in Spain.
George Foulkes keeps mentioning Spain. Does he accept that we took evidence from Spain on the matter in the previous session, that the task force took evidence from there, and that it said in its evidence that it was the structure that was important, not the opt-out system? George Foulkes does not seem to agree with the evidence.
Mike Rumbles is entirely wrong. It is the combination of the structure and the opt-out system that is important. Everyone to whom I have spoken says that.
The recommendation that has been made at least to review the position on introducing an opt-out system is welcome, but it was made on the understanding that the Scottish Government will invest money and effort to implement the other recommendations. I welcome the appointment of John Forsythe and the cabinet secretary's willingness to consider early review, but Ross Finnie was right. That willingness means that it is open to the cabinet secretary to accept Richard Simpson's amendment. That would do precisely what she said in her speech she wants to do.
We want and need donor numbers in Scotland to double. If we accept what the task force has recommended, organ donor numbers will increase by only 50 per cent in five years, as the task force said; donor numbers will not double.
No. I am running out of time.
In order to increase organ donor numbers by 50 per cent, the Scottish Government must provide the necessary funding and resources, employ specialist staff and conduct a hard-hitting national campaign. Even then, we will be lucky if a 50 per cent increase is reached.
My one reservation about this debate is that it has been a little bit like groundhog day—we are all making speeches that are somewhat similar to speeches that have been made in previous debates. Some sceptics—not I—have suggested that the Government decided to have this debate because it does not want to debate some of the other issues that that have not received a similar level of scrutiny, such as bedblocking, increased waiting times, the shortage of free personal care and improved cancer services. I hesitate to say that, but sceptics say it.
In summary, we should start immediately to implement the task force's recommendations, but we must be ready to revisit the possibility of introducing an opt-out system well before the five years. If the enhanced voluntary donation system does not produce the extra organs that are urgently needed, more people will die unnecessarily.
Members will be aware that the first recorded organ donation took place some time ago, when Adam parted with one of his ribs in order that woman could be created. The undoubted success of that operation has resulted in numerous copycat exercises, although none has been deemed as being as favourable as the initial venture. However, there is no doubt that an organ transplant is the only pathway to
The donor deficit has fashioned my gut instinct that the British Medical Association's call for a system of presumed consent—if I may use the term—for organ donation is the best way forward. George Foulkes's silvery tongue convinced me, too. After all, what use is one's body to one when one is dead? Most religions believe that the soul leaves the body at the moment of death, leaving only a husk behind. Similarly, those who have no religious beliefs feel that a body without life is not much use. When I die, I want my body to be put to as much use as possible for others. They can take what they like, although I must give the warning that the liver is a little shop soiled. What is left should be turned into ashes and used as a fertiliser or to give a better grip on slippery roads, or for some such beneficial purpose. I will be somewhere else and will not care a hoot.
The trouble with gut instincts, however, is that they are often shown to be wrong. The BMA supports the UK task force's recommendation that we should improve the infrastructure that supports organ donation. All too often, usable organs have not been utilised because of administrative shortcomings. There has even been a financial disincentive for health boards and authorities to take part in organ donation. Although no one accuses the NHS of attempting to save money by discouraging organ donation, it seems sensible to remove such barriers in future.
Steps must be taken to encourage the public to sign up to the organ donor register. As the task force report states, although 65 per cent of the population say that they are prepared to donate organs after death, only 25 per cent have registered that preference. That gap must be narrowed if the number of organ donations is to be increased significantly.
Why not have an opt-out system? My first doubts arose when I read the organ donation task force's second report, which contains welcome recommendations. As the cabinet secretary told us, right at the beginning, the report states:
"When the Taskforce began its deliberations, members had a variety of views. By the end of the process a clear consensus had been reached, but only after an extensive range of evidence had been considered along the way".
I remind members that the task force's clear consensus was that moving to an opt-out system at this time may carry
"a significant risk of making the current situation worse."
Who are these task force members who have made that recommendation? Are they a load of do-gooders who are out of touch with the opinion
Why might an opt-out system make matters worse, not better? The task force exposed several factors. Families could feel pressurised, the relationship of trust between families and clinicians could be eroded, and doctors might, as one witness said, jump in too quickly before a patient is actually dead. Some faith groups even suggested the possibility of starting an anti-donation movement to encourage people to opt out of donation should an opt-in—I mean opt-out—scheme be instituted. Others consider that, in this day and age, a system of presumed consent is a little paternalistic, as other members have said. Many of the people who gave those opinions are involved in transplant surgery or donation every single day of the year.
Although I still support the eventual establishment of an opt-out system should that be necessary, I am inclined to support the task force's recommendation that the time is not yet ripe for such a bold move. As there are so many misconceptions in the community about organ donation, I accept that there is a serious risk that premature adoption of an opt-out system might not only make things worse in the short run but so poison the atmosphere that future progress would be inhibited. Members, including, I am sure, Lord Foulkes, will remember that the legislation to ban smoking in public places became possible only once the public had accepted its necessity. The same applies to organ donation.
Let us work hard to put the good recommendations of the task force's first report into action. We should also inform the public about the need for organ donation and dispel the myths surrounding its procedure. Then, and not until then, will a system of presumed consent become desirable and possible, although it may not be necessary.
This is our third debate on organ donation this year. There can be no doubt that the Parliament—and, indeed, the Government—takes the issue seriously and has given it substantial prominence
During our debates, we have heard some well-reasoned and, sometimes, emotional speeches, which have put on record the cogent arguments for and against a system of so-called presumed consent to organ donation. The debate continues, and both of this year's excellent reports by the organ donation task force make it clear that there is no simple way to achieve an increase in organ donation. However, it is beyond dispute that there is an urgent need for more organs if we are to get anywhere near meeting the needs of the many people who await transplantation.
There also seems to be little doubt that, as Richard Simpson said, the numbers of people with end-stage organ disease will increase as our population ages and individuals suffer the long-term effects of the diabetes, obesity and excessive alcohol consumption that are prevalent in Scotland today. We must step up our efforts to alter lifestyles as a means of avoiding those diseases in the first place but, of course, the culture change will not happen overnight. Research must also continue into finding a cure for the many chronic conditions that lead, eventually, to organ failure and into the practicalities of viable organ generation within the laboratory.
In the meantime, transplantation is the only hope of saving the lives of many people whose organs can no longer perform their vital function, so we must consider every possible means of increasing the rate of organ donation and giving hope to those who are going through the pain and trauma of end-stage organ disease. Members should believe me that it is traumatic and deeply distressing to watch close friends or family members suffer the extreme breathlessness of respiratory or heart failure, or the severe pain of procedures such as sclerotherapy for the oesophageal varices that result from a failing liver.
I welcome the organ donation task force's latest report, which follows on from the one that we debated in March. The reports make it clear that the current system of organ donation is failing to meet the increasing demands that are placed upon it and that everything possible must be done to increase donation rates in the United Kingdom now within the existing legislation, which provides for opting in to donation. Initially, I was not clear about the intention of Richard Simpson's amendment but, having heard his explanation of it, I am inclined to agree with it, although the five years that the task force proposes seems a reasonable timescale for proper assessment of the efficacy of its proposals.
The factors that influence the rate of organ donation have been well rehearsed in our previous debates and the task force reports, and I have little to add. There is no doubt that there are many more people in Scotland who are willing to donate their organs than are on the donor register, and that it is largely inertia that stops them from registering. As I have said in the Parliament before, it took me more than 10 years from my son's transplant to register myself, and I am not altogether sure that my husband and daughter are even on the register, although I know that both would want me to consent on their behalf should the situation ever arise.
Every opportunity to make organ donation easy should be taken up. Efforts should also be made to encourage people to think about what happens to their organs after death and to discuss the matter with their families. Unfortunately, in our society today, there seems to be a reluctance to acknowledge that death is an inevitable part of life, and it is seldom talked about in any depth. Our newspapers and other media are full of the fatal accidents that occur daily on our roads, but we do not often hear about the victims' contributions to saving the lives of others by the transplantation of their organs to which their bereaved families generously agree.
I agree with the BMA's assertion that improving organ donation infrastructure and increasing donor numbers are interdependent measures. To that end, we must somehow change our culture and create an environment in which donation becomes the normal choice. The task force has stressed the need to improve donor identification and referral and to enhance donor co-ordination and organ retrieval. The success of such efforts will depend on all parts of the NHS embracing organ donation as a usual, rather than unusual, event.
The recommendations to improve organ donation infrastructure and to remove the barriers to donation should, if implemented across the country, go a long way towards achieving the UK target of almost doubling the rate of donation by 2013, without having to resort to further legislative change. If the proposed infrastructure changes that the Government is addressing, which the cabinet secretary spelled out earlier, achieve the desired result, then well and good. However, if they do not, changing to an opt-out system with appropriate safeguards, which appears to be supported by more than 60 per cent of the population, will have to be considered again. I therefore very much welcome the task force's recommendation to review the situation in five years in the light of the progress that is made on implementing the recommendations.
I hope that between now and 2013, satisfactory progress will be made and sufficient organs will
Thank you, Presiding Officer, for the opportunity to contribute to the debate. We all think of giving in this Christmas season and of wrapping our Christmas presents, but a gift of an organ must be one of the most precious gifts that we can give. I would have a national gift register—I would not call it an organ donor register—that would entitle anyone to give any gift in the land that they wished. However, the most precious gift of all would be the gift of an organ.
"calling for a radical review of the organ donation system and for concerted action to improve all aspects of transplantation".
The BMA also states that the UK organ donation task force
"has made clear in its two reports ... that the current system is unable to meet the increasing demands placed upon it and steps must be taken as a matter of urgency to increase donation rates."
I welcome that acknowledgement and the determined effort that is being made to improve the situation for those who are waiting for an organ.
As ever, I am indebted to those who contacted us about the issue prior to the debate. I am particularly thankful to the BMA, which advised us of professional support across the country for its position. Since 2000, it has been the policy of the BMA, which represents the majority of doctors in Scotland and the UK, to support a model of soft presumed consent. The Royal College of Surgeons, the British Transplantation Society and the Royal College of Pathologists have also declared their support for a system of presumed consent. The Royal College of Nursing removed its opposition to presumed consent in spring 2008.
Thinking of public opinion, I note that we have heard that upwards of 700 people are waiting for organ donations and that more than 60 per cent of the public support a shift to a system of presumed consent with safeguards. Countries that operate a presumed consent model have roughly 25 to 30 per cent higher donation rates than countries with
I support the task force's recommendation to improve the infrastructure, however, and I welcome the fact that the Scottish Government has committed to fund the changes by matching the level of funding in Scotland with that in England. If fully implemented, the infrastructure changes that the task force recommended will address some of the current system's shortfalls, such as missed opportunities for referral to a transplant co-ordination team and diagnosis of death by brain-stem tests.
One of the reasons for the relatively low donation rate in the UK is the 40 per cent of cases in which relatives do not consent to donation. Often, they have to decide without knowing what the deceased individual wanted, and their decision is made against a background in which saying no may appear to be the standard response to uncertainty. High-profile campaigns to raise awareness of organ donation and encourage more people to sign up to the organ donor register may go some way to improving that situation, although efforts over the past decade to achieve that have had limited success.
I continue to believe that a change to a system of presumed consent for organ donation, with the introduction of an opt-out system, would have greater benefit and would lead to more lives being saved and transformed. As Christine Grahame said eloquently in her speech, we must remember that we are talking about people whose lives might disappear through our inaction. We have the chance to take action now rather than wait another five years while we watch people die for want of an organ.
As politicians, we know that improving organ donation infrastructure and increasing donor numbers are interdependent. Donation rates cannot be successfully improved without better infrastructure and resources. Creating an environment in which donation is the normal choice would lead to more organs becoming available for donation and would allow the improved resources to be fully used. It is not a question of either improving the infrastructure or changing to a system of presumed consent; the question is whether infrastructural changes alone will suffice or should be combined with a change to presumed consent. I support the latter approach and am disappointed that the task force rejected that option. Presumed consent should continue to be considered as a serious possibility for the
Repeated surveys show that the majority of the public say that they support organ donation. I heard and respect Ian McKee's opinion. Having worked with him on the Health and Sport Committee, I have a healthy respect for everything that he says. However, as well as the list of much respected people that he mentioned, we should have a healthy respect for the opinion of the wider public who were not part of the task force. In the most recent survey that was conducted in 2003 for UK Transplant, 90 per cent of people claimed to support organ donation. However, for various understandable reasons, only 25 per cent of the UK's population is registered on the NHS organ donor register.
Opponents of presumed consent often argue that such a system is an affront to patient autonomy because it removes choice from donors, but we need to consider how patient choice works in the present system. Around 25 per cent of organ donors in 2006-07 had registered their positive choice for donation on the organ donor register. In the remaining 70 per cent or so of cases, families decided on behalf of the deceased. Faced with the decision, around 40 per cent of relatives opt for the default position, which is not to donate. We know that in some cases relatives refuse to donate because the deceased made it clear in their lifetime that they did not want to—everyone has the right to refuse to donate their organs after death and to have that wish respected. However, under the current system there is no formal mechanism for people who feel strongly against organ donation to register their objection. In the absence of such a mechanism, it is impossible to be sure whether patient autonomy is being respected after death. A key reason why relatives refuse donation is that the wishes of the deceased are unknown, whereas family members rarely go against the known wishes of the deceased. Under a system of presumed consent, individuals are far more likely to have discussed their views with their families.
For those reasons, I hope that we will move with urgency to a situation in Scotland in which organs are available to people who depend on organ donation.
The nature of this debate is somewhat different from our March 2008 debate, which became rather polarised around the positions of either having an opt-out system or continuing with the present system with some changes. The organ donation task force report has changed the tone and nature of the debate to some degree.
Like others, I very much welcome the report and the way in which the task force has considered the issue in such detail. The report clearly sets out not only the challenges that our country faces in increasing the level of organ donation but the action that is necessary to increase such donation by 50 per cent in the next five years. It is fair to say that achieving a 50 per cent increase in five years is an ambitious target, given the history of the issue and the different actions that have already been taken to try to improve levels of organ donation. However, with its expertise, the task force clearly believes that the target is achievable.
When we consider the organ donation figures in the rest of Europe, it is worth bearing in mind that even after a 50 per cent increase in Scotland, our organ donation rate will be considerably below the average of many other European countries. That means that a 50 per cent increase in the next five years is only the first step in increasing our organ donation rate to be more in line with the European average.
I confess that I am something of a convert to the opt-out system. Like many, I have always recognised that the key way to increase organ donation is through the necessary infrastructural change in our health service. From the recommendations and findings in the task force's report, it is clear that the task force sees infrastructural change as key to achieving an increase—the evidence from Spain speaks for itself. That is not to say that I believe that an opt-out system does not have a role to play, because it might have a role to play further down the line if the infrastructural changes do not deliver the necessary increase that we want.
The infrastructural changes that must be made will not necessarily all be made quickly. That applies particularly to the cultural change that is necessary to go from seeing organ donation as unusual to seeing it as the norm in our health service. It is important to recognise that, even with a review in five years or sooner, instituting all the infrastructural changes that are important to achieving the 50 per cent increase might be difficult.
Like others, I welcome the £5 million that the cabinet secretary has committed to providing over the next three years. I also welcome the fact that the review need not take place after the full five years and that it might be sooner. On that basis, I will not support Richard Simpson's amendment, because I believe that a review should take place. The motion provides certainty about that.
It would help to have more clarity about the factors that could trigger the review. For example, will a 15 per cent increase in the number who are on the organ donor register in three years' time
As other members have said, it is important not to forget the human side. Our Parliament and the Government have a tremendous responsibility to get the system right. I have a family friend whose mother will, just this week, donate a kidney for transplantation because a kidney is unavailable for him and the future availability of a kidney is likely to be limited. Since that young man has had to go on kidney dialysis, he has lost his job and much of his social life. All the wider aspects of life that are affected by organ failure should never be forgotten. That is why, unlike Lord Foulkes, I believe that preventing the unnecessary death of 1,000 people throughout the UK every year is extremely worthy of debate in the Parliament. I would have thought that someone of his experience would recognise that the debate should not be about making cheap political points for his narrow political interest, because it is about saving individuals' lives.
Everyone in the debate wants an increase in organ donations, as Michael Matheson said, to save lives and to ensure that people who are in need have a much better quality of life. The question that we must address is: what is the best way to ensure that more organ transplants take place throughout the country and that we save as many lives as we can?
The UK organ donation task force has done serious work on the subject, and I am happy to follow all its recommendations. I was delighted that, in her speech, the cabinet secretary's tone was right and what she said was right. I do not agree with her personal views on opt-out, but everything else that she said was correct.
Richard Simpson's amendment is not helpful, because it does not support all the recommendations of the task force. It was clear from his speech that he wants to focus again on what he and others continue to call presumed consent. I respect the sincere views of Richard Simpson and other MSPs who support the state having the right to take a deceased person's organs without permission—that is what it is, even though they still call it presumed consent. I do not agree with them, but I respect their intentions.
Helen Eadie cannot have it both ways. A gift cannot be taken; a gift must be given. We should
We should address the real issue. When nearly 30 per cent of the adult population in Scotland is signed up to the organ donation register—better than in any other part of the UK—why have so few donations taken place while so many people are on the waiting list for a transplant? The problem is not getting more people on to the register, but getting the health authorities to act on the powers that are already given to them by the Human Tissue (Scotland) Act 2006.
I was a member of the Health Committee in the previous session of Parliament when we took evidence on the issue, and the Parliament changed the law. For the first time, we gave legal status to the organ donor register, the card and the wishes of the deceased. If a deceased person is on the register, no other formal permission from anyone else is necessary. The deceased's wishes are paramount.
I agree with the UK organ donation task force and the Government's motion that, within the existing legislative framework, we should take all possible steps—I like that phrase, "all possible steps"—to increase the number of transplants. Doubling the number would be immensely helpful, but like Michael Matheson I want to go further. I want everyone who is waiting for a transplant to have a reasonable chance of obtaining one.
I come to my main point. To achieve a real increase in organ donations, the Scottish Government must ensure that we have a system like the one in Spain, in which there is a specialist team in every major hospital to ensure that organ donation issues are fully and effectively addressed. I was pleased to hear from the cabinet secretary that work in that direction has begun with the £5 million that has been allocated. I genuinely think that that is a good step in the right direction. It is a question of investing resources where they are needed and taking action, and not just relying on an increase in the donor register.
The solution clearly lies with the Scottish Government. We need specialist teams in every major hospital, and only the Scottish ministers can provide the necessary resources. I am sorry that George Foulkes is no longer in the chamber, because I agree with Michael Matheson that George Foulkes missed the mood of members. This is not the time to criticise the Government on the national health service—those times will come later, I can assure the cabinet secretary—as the Government is going in the right direction on organ
I am pleased that the cabinet secretary has started out correctly, but much more needs to be done if we are to achieve our goals. That is not to do with the register; the only measure is how many successful transplants we achieve over the next five years.
I will reflect on an issue that other members have touched on, but which I hope will be given further consideration in the debate over the next few years, whatever the timescale. I refer to the rights of those for whom informed choice, and therefore presumed consent, is difficult.
As the convener of the cross-party group in the Scottish Parliament on Alzheimer's—and as members are aware—I have expressed in the Parliament the view that those with Alzheimer's and dementia should have a voice, even when communication is not easy for them. We must ensure that any guidance or legislation that is put in place not only helps to facilitate an increase in the number of donations, but respects the wishes of the individual. We must have a clear strategy that allows vulnerable adults to express a view, particularly when communication and understanding are difficult for them.
The rise in the diagnosis of early-onset Alzheimer's means that increasing numbers of younger people—some in their 50s and 60s—are affected. It is no longer only those in old age who are affected by Alzheimer's. If a framework of opting out is brought into place, my hope is that guidance will resolve issues such as that which I have highlighted. I hope that it will make clear that the wishes of vulnerable adults are to be respected, no matter the way in which they can express them. As a society, we are too often deaf to those who can communicate only in non-verbal ways. That is wrong as a principle. We have a duty to ensure that we do not presume consent on behalf of those who have little voice, whether they are expressing a view on organ donation or on any other policy area. Their rights must be respected.
I turn briefly to the European Commission's proposal for the directive, which it has entitled "standards of quality and safety of human organs intended for transplantation" and which it published just a few days ago. Although the proposed directive does not consider the system under which organs will be obtained—in other words, opt-in or opt-out—it requires a number of principles to be put in place, which are relevant to us. One such principle is for all 27 member states
The proposed directive looks to improve the possibility of organ sharing between countries. It is generally agreed that the full potential for cross-border exchanges has not been realised thus far. Furthermore, the proposed directive seeks to discourage the black market in organ sales; all members can sign up to that.
It would be remiss of me not to mention that the Parliament's European and External Relations Committee has agreed to a subsidiarity pilot on the matter, in co-operation with the House of Lords. In effect, Parliaments such as ours are being given the opportunity to be consulted on matters of relevance and to comment on the processes by which decisions that are of relevance to us are agreed. In terms of the debate, we are talking of decisions on the standards of the quality and safety of human organs that are intended for transplant.
The European and External Relations Committee has written to the Minister for Europe, External Affairs and Culture and the convener of the Health and Sport Committee to invite their comments on the process and our role in it. I hope that the Parliament and the Government will take the opportunity that the pilot affords to put on the record our view on the matter.
According to the European Commission, 56,000 patients are on waiting lists for organs in European Union countries. The mortality rate for those who are awaiting heart, liver or lung transplants ranges from 15 to 30 per cent. The problem goes well beyond our borders. In particular, the proposed directive to which I referred affords an opportunity to tackle the exchange across Europe of organs for recipients who have a low chance of success because the organ is in the infrequent match category.
All members agree that more has to be done to increase the number of donors in Scotland. As other members have said, there is no greater gift than the gift of life. Let us reflect on that. In rising to the scale of the challenge, however, let us not forget those who have difficulty in understanding and in articulating their views. That is not a reason for not acting; it is a reason for ensuring that a robust and informed scheme is put in place.
Medical advances and modern life have given us much to celebrate. We now have many more opportunities to give and save life. As Christine Grahame and Ross Finnie have already rather eloquently stated, organ donation should be the gift of life.
I have a very brave constituent who is waiting for a liver transplant, and I have been involved in making representations on her behalf about the care that she has received. There are currently 22 Scots waiting for a liver transplant, and my constituent is one of four who have been waiting for that transplant for more than a year. As a result, I am aware of the work of the Scottish liver transplant unit of the Edinburgh royal infirmary. It is a busy service with a 96 per cent occupancy rate for its 18 beds. It is a small unit.
The work that is done by the living donation liver programme is particularly exciting. The liver is an amazing organ that can practically regrow itself.
I have always been instinctively sympathetic to the BMA's position in favour of a soft system of presumed consent, notwithstanding the unhelpfulness of that language. The BMA's position is pragmatic and sensitive to the views and needs of grieving relatives. It is based on the reality of the current system, in which only 25 per cent of organ donors in 2006-07 have registered their positive choice, with 70 per cent of organ donations being decided by the families on behalf of the deceased.
However, having listened to the debate, I am interested in the suggestion that Christine Grahame made on behalf of Dr Ian Grant, who is a consultant at the Western general hospital. That suggestion was that we need people to register for or against organ donation, although I believe that Christine Grahame said that Dr Grant thinks that such registration should be compulsory. That is an attractive suggestion, especially as we all go for regular health checks. Women go to well woman clinics, many of us go for flu jabs, and we make regular visits to our GPs with our children.
We also go to lawyers to discuss the making of our wills and what we want to happen when we are no longer here. Nanette Milne is correct to say that, culturally, we have an aversion to talking about death, and the services with which we all have daily contact could do something to change that. I do not want to sound morbid, but talking about what we want to happen once we are no longer here must become a cultural norm.
Last night I was showing the Kirknewton gala day committee around the Parliament and debating chamber. The group was made up of a cross-section of women from different backgrounds and of different ages. While we were in the chamber, we were talking about the debates that are coming up. I get the sense that people want to discuss life-and-death issues. Although an individual might not be personally affected by an issue, they do not have to make a great leap to imagine what could happen to them or to one of their loved ones. It is important that we keep the debate going and that we do not stand still. I
Organ donation needs to become the norm and the natural decision. It needs to become part of our culture to say that we will freely give what is, after all, the gift of life.
I have listened to the debate—which is highly appropriate—with great interest. I am sorry that George Foulkes has left the chamber. He used an old rhetorical flourish, which is almost like asking someone whether they are still beating their wife. It is a trick that works, but it did not work in this context. It is relevant to have such a debate in the season of good will because, as others have said, we are talking about saving lives.
The cabinet secretary discussed the work of the organ donation task force and its report. She mentioned that strong views were held on both sides of the argument in the Parliament, but the backdrop to that is the need to increase donation.
Richard Simpson mentioned two important obstacles to our efforts: the fact that we have an ageing population, which self-evidently presents a problem; and the problems that are associated with the increased incidence of hepatitis and diabetes. We are having to navigate our way through such problems. Richard Simpson suggested that people could register as organ donors on council tax forms. There are ways in which we could increase reach-out that would help us to tackle the problem.
I congratulate Mary Scanlon on getting to the heart of the problem with the expression "presumed consent". I do not know how other members feel, but I feel that "presumed" is a difficult word. The word "presumption" carries a certain weight. To be light-hearted, many would presume from the way that I walk and talk that I am a Tory, but they would be entirely wrong to do so.
I will not rise to the sedentary comments.
Mary Scanlon provided an extremely apt definition of that problem, and I congratulate her on it. Her second point was about the remote islands. I am not aware of the issue, but it would bear some investigation by the cabinet secretary
The two most important points that my colleague Ross Finnie made were about how we persuade adults to agree to donate and how we persuade their relatives to agree to that, which is very much the crux of the problem.
Christine Grahame was right to remind us that we are dealing with people who are addressing the ghastly face of death and all the emotional difficulty that goes with that, which is why sensitivity is so vital.
In addition to his customary witty remarks, which on this occasion were about Adam's rib and the use of his own remains to grit the roads, Ian McKee quite rightly reminded us of the task force's expertise. Its members came to their work with a multiplicity of opinions but reached an overall consensus. As Angela Constance said, it is important that we keep the debate going. Ian McKee's point is useful in the context of how we in the Parliament, collectively, come to take a view on the issue.
Nanette Milne made an extremely useful point about celebrating the fact that people are alive because of the generosity of people who have died who gave their organs. If we can connect more with people who can say, "I am alive today because of the generosity of a person who is not with us," we will fulfil part of the bargain. That will complete the equation, if you like, and will help families sign up to the decision making that Ross Finnie mentioned.
I acknowledge and applaud the considerable track record on organ transplantation of my colleague Mike Rumbles. He asked why so few transplants are carried out when so many people are signed up to donation. Many other speakers, including Helen Eadie, Christine Grahame and George Foulkes, have said that it is a question of getting in place the specialist teams. As Richard Simpson said, we must identify how the £5 million will be spread across everything that we are trying to do.
The issue is extraordinarily difficult, as I said, and I think that we are right to be in the position that the cabinet secretary and other members accurately described. The situation might develop. The Parliament has the power to decide to review the position sooner than in five years' time. I am not inclined to support the amendment in Richard Simpson's name, notwithstanding the generous spirit in which the member spoke to it. However, there will be a free vote.
As Nanette Milne said, we must reach out to people who are alive because someone gave their
We must get on with it and see what we can do. The debate is crucial. People who could have a longer life are dying because organs are not available for transplant. Given our short span on this planet, a long life is probably what matters to us most. I congratulate all speakers in this worthwhile debate—and it would be inappropriate if I did not wish members of all parties a very merry Christmas.
Many members who have spoken in previous debates on organ donation—on both sides of the argument—spoke in today's debate. Their testimony remains moving. Deeply sincere opinions are held on both sides of the debate on presumed consent—the final big issue.
Members have talked about opting in and opting out, but I am not sure that the terminology has worked, because I am afraid that the Official Report might show that several members unwittingly mixed up their opt-ins and opt-outs. If members cannot get it right, perhaps we are not using the right terminology.
We owe the organ donation task force a debt of thanks for its considered, balanced and persuasive report. I was willing to be persuaded that there should be an opt-out system, but I support the task force's conclusion that we should revisit the issue in five years—or sooner, in the circumstances that the cabinet secretary described—and in the meantime do far more to increase the number of people who proactively choose to opt in, given that a huge percentage of the public appears to be willing to do so.
I am anxious not to repeat what I have said in previous debates. I agree with much of what has been said in members' excellent and informed speeches and I welcome many of the actions that the cabinet secretary described. If only to lighten the mood, I will say that having showered applause on the cabinet secretary throughout the year I am crushed not to have received a Christmas card from her—
I can tell Richard Baker that I received a card from his colleague Jackie Baillie. Mrs Carlaw and I were rather discombobulated about what that might portend for next year. However, I have received the card in the spirit in which I am sure that it was intended.
In recent times many Labour spokesmen have made great play of the fact that under a Labour Government far more has been done to open access to computers for schoolchildren and families than was done under the Tories. Such comments are often made with great force and passion, as if they indicate some great failing on the part of previous Conservative Governments. That the average computer needed to be housed in a small boxroom when Mrs Thatcher came to office is neither here nor there. That laptops had yet to be produced and the internet invented are minor details. Of course, I could argue that the sector's potential was encouraged entirely by the entrepreneurial culture that the Thatcher Government established.
The other side of the coin is that Labour has been responsible for the loss of far more personal data than any previous Government has lost. We all lament Labour's serial incompetence. However, to be fair, the counterpoint to the argument that I just set out applies in this context. If laptops did not previously exist, let alone memory sticks or even disks, it is hardly surprising that more are lost now than were lost in the past.
May I first respond to the point of order?
It is clear that the member is in order; if it were otherwise I would have stopped him. However, I was beginning to wonder when he would get to where I know he is going.
The frequent loss of personal information is deeply ingrained in the public subconscious. That is likely to prejudice public confidence in the confidentiality of the systems that would be needed to manage an opt-out arrangement. People simply would not believe that they could depend on their express wishes being observed.
Such is the cynicism abroad among the electorate that I doubt whether many would be reassured that their wishes, having been expressed, would necessarily be observed. What, they would ask, would be the penalty if their wishes were not observed? Would an illegally harvested organ result in the criminal prosecution of the individuals concerned? If not, what would be the hand that held staff—passionate to save the life of another patient—back from making an accidental error? Those would be the public's fears, and I do not think that politicians, given the national record, can with any authority say that
Members should reflect on the emotions that would be stirred by the frenzied media scandal when the inevitable happened. That could lead to a massive crisis of confidence in the integrity of the NHS. The task force touches on all that, but I suspect that even the task force underestimates the political whirlwind that could follow. As members on all sides will know, seemingly trivial transgressions can trigger extraordinary attention. For that reason, at the moment I share the conclusion that we cannot proceed with an opt-out system today.
In our previous debate, I expressed my personal reservations about the national kill Jill campaign. From parliamentary written answers that I have seen on the numbers of people registering since the campaign, I think that my reservations had some foundation. I therefore disagree slightly with Nicola Sturgeon when she attests that the campaign has shown the way forward. On the contrary, I would prefer that we financed far fewer big-bang campaigns, and concentrated instead on enhanced direct mail when opportunities present themselves. For example, when the annual electoral roll form is distributed to households, could not a well-presented organ donation registration form be included? There are many other similar opportunities.
In the previous debate, Ian McKee suggested that a form might accompany passport applications. In fact, it already does. However, passport applications are a 10-year or five-year affair, and we need to accelerate matters faster than that. In any event, I should share with the chamber some reservations on the issue. My family has just renewed my sons' passports. I was rather taken aback when my 14-year-old son received his passport with organ registration material. I am not sure that all children should be approached directly in that way. Children mature in different ways and at different speeds. Some carry anxieties about life and death into their teenage years, and such material can prove unnerving and distressing. I must also observe that the leaflet that came with the new passports was a small one-colour affair and was undistinguished and, frankly, unimpressive.
Far better that national advertising and marketing budgets be concentrated and co-ordinated to ensure that high-quality material is produced—intended to reach individuals at least once a year—on a sustained basis, than that they produce inadequate and slapdash day-to-day
As we go about implementing the vital recommendations of the first report of the organ donation task force—a report embraced by the Government and supported in this chamber—we must do more to increase voluntary registration in the wake of the second report. It may be that, in five years, public confidence in Government-run computer systems will have been transformed—I hope so. However, for now, the challenge year on year is for us to be able to demonstrate that we have acted in a concerted and nationally led way to raise substantially the number of volunteer donors and the number of transplants performed. That is our collective duty, and I urge the Government to lead that task with confidence, enthusiasm and courage.
The one thing on which all speakers appear to agree is that the conclusions and recommendations of the task force are both worth while and to be accepted and acknowledged. Its work is extremely welcome. All the recommendations—apart from the contentious one on the opt-out problem—are clear. I will come back to them later in my speech.
Whatever the outcome of the debate—which we may learn this year, next year or in five years' time—it is true that most members wish donations to be seen as gifts. I fully accept the points that were made by members who are concerned about the language of "presumed consent". Those of us who believe in an opt-out system have been struggling for years to find a term that would more correctly embody what we are seeking to achieve. I suppose that we have to return to "opt-out system" as the only term that does the job.
Ross Finnie made some good points about the Parliament's previous attempt—through the Human Tissue (Scotland) Act 2006—to endorse authorisation and therefore give some legal status to people's wish to donate. He also made the point, correctly, that that has not changed the practice of seeking the family's endorsement of any decision, even if it is authorised. That practice continues. Personally, I feel that that is correct. The family's wishes must always be respected. It is inappropriate for a family in grief to be forced into making decisions—
Those who are experienced in the field have said to me repeatedly that, in practice, families will continue to be asked. That soft system is present in 12 of the 19 countries that have opt-out systems, and I think it is the correct one. The families still need to be asked.
When the question is asked and the family is told that the deceased had expressed their wish to donate under a system that was authorised by the Parliament, the likelihood that the family will reject that wish is low. If they are asked to make a positive decision and say what the wishes of the deceased would be, they might not know, and they might not wish to make the decision at that time. It is too difficult for people to make that decision when they are in a situation of acute grief.
Does the member find attractive the proposal of the consultant surgeon at the Western general whom I mentioned? He proposes two lists—a list of those who opt in to organ donation and list of those who opt out, both of which would have persuasive status with the relatives and families.
It is important and correct that we understand the wishes in life of the deceased. A number of the countries that I mentioned have both opt-out and opt-in registers, and it is perfectly practicable to have those, whatever doubts Jackson Carlaw might have about their maintenance.
Public support for an opt-out system is undoubtedly growing. That is evidenced in the task force's report. Some say that the figure is more than 70 per cent—for example, the YouGov poll for the BMA—while others say that it is in the 60s. Whatever it is, the number of people who are in favour of an opt-out system is undoubtedly growing, so we will have to return to the issue.
We all agree that, whatever happens, we need to implement all the recommendations in the task force's report. We need an increased number of co-ordinators and a specified professional person in every hospital, whether they are a full-blown transplant co-ordinator or have that task just as part of their job. That approach is crucial to the delivery of the task force's recommendations, because it will make it usual for donation to be considered.
Mary Scanlon made the good point that we do not know how many donations do not happen because the family is not asked or the issue is not broached. I hope that the system of data collection and analysis and the audit of the process as it proceeds with the new recommendations will be undertaken appropriately. I look forward to seeing some detail on that.
I welcome the cabinet secretary's statement that there will be, as the task force recommended, an independent retrieval system that is co-ordinated nationally.
I would like to hear—perhaps not today, but within the next six months or year—precisely how the cabinet secretary proposes to remove the financial barriers that hospitals face. If it costs a trust in England or a board or a hospital in Scotland money to undertake donation, I suspect that they are less likely to follow it through.
In the UK, there are 1,000 deaths a year on the waiting list, and the number is growing. Donations from brain stem death and non-beating hearts are low compared with the rest of Europe and are declining. The transplant programme in the UK is, to be frank, being saved from a disastrous decline only by the huge increase in living donors. Angela Constance eloquently referred to liver donation as being an important element. Living donations are up quite substantially: kidney donations are up by about 100 per cent in six years to almost 680, and liver donations are also increasing.
It is interesting—it is almost a sign of desperation—that families take the risk of death, which is one in 3,000 from a live kidney transplant, or one in 100 from a live liver transplant, because they know that their relative cannot get a cadaveric, or dead, kidney. The increasing number of live donations shows the extent to which the programme is supported. I praise live donations—the families concerned are among the people who most need our praise—but we should not rely on them totally.
In today's debate, we have heard a spectrum of opinions. Some members remain almost entirely against an opt-out system—although even they take account of certain considerations—whereas others, such as George Foulkes and perhaps Helen Eadie, would like an opt-out system today and feel that the task force has missed an opportunity. Most of us, however, lie somewhere in between.
The cabinet secretary said that we will review the matter at an earlier stage in Scotland if we need to. I moved the amendment in my name, which would allow us the freedom to do what we want in that respect and not be tied to the task force's recommendation, because Scotland's current level of donation, at 9 point something per cent, is already substantially below the UK's 13 per cent, and is a quarter of the level in Spain. Even with all the measures that the cabinet secretary will introduce, it is extremely unlikely that we will achieve anything like the European average.
By maintaining your position on your amendment, you are actually
I cannot accept the member's point. The UK task force will undertake a review at five years—that will take place, whether we want it or not. The removal from the motion of our adoption of the task force's recommendations will allow us to—and perhaps give a signal that we intend to—have an earlier review.
Michael Matheson made a useful point, which I hope the cabinet secretary will address, if not in her summing up, then at a future point—perhaps in a statement on the progress that is being made. It is important that the triggers for that early review are defined. What will constitute sufficient success for us to decide that we can wait for five years? Perhaps we should wait, but we need to know what will constitute a sufficient improvement for us not to.
The opt-out system is used in eight of the 10 countries that have the highest levels of donation at present. We might have to consider introducing that system, because lives can be saved, and lives are currently being lost unnecessarily. I continue to commend my amendment to the chamber.
I thank all the members who have contributed to this excellent debate. Strong views have been expressed on all sides, although everyone agrees about the need to do everything we can to increase the rate of organ donation.
I will start with Jackson Carlaw. I have two things to say to him. First, he made a good and well-crafted speech. I do not entirely agree with him on the issue that he raised, but it is an important issue that no one else raised: public trust in the state's ability to use and manage personal data or expressions of personal wishes. My real reason for mentioning Jackson Carlaw first, though, is to assure him that the Christmas card is in the post. That is not strictly true as it has not been written yet, but when it is—along with everybody else's—it will be in the post.
Opting out is a subject on which everybody has strong views. It generates impassioned debate and a wide range of opinions, as has been the case this afternoon. Richard Simpson is right: as the debate has developed, the number of people expressing definite support for opt out has grown, but so, too, has the number of people expressing definite opposition to it. In between those two positions are a lot of people who are genuinely
I will respond to as many of the points that have been raised as I can. I accept absolutely that Richard Simpson's amendment is sincerely motivated; I do not doubt that for a moment. The SNP will have a free vote this evening. I will not support the amendment for two reasons. First, I believe that it is unnecessary and I would prefer the Parliament to unite. Parliament's hands are never tied; it is always open to Parliament to revise its view in the light of developing circumstances or new information. The position is no different in this case. Secondly, the amendment is ambiguous, so it would leave the motion ambiguous. Those who support opt out could read the amendment as allowing us to have an earlier review; those who are firmly opposed to opt out could read it as removing any commitment for the Parliament to participate in a review in five years' time. The fact that the amendment is both unnecessary and ambiguous will lead me to vote against it, but of course each member will reach their own conclusion.
Non-heart-beating donation and other ethical issues are extremely important. The ethics sub-group of the Scottish transplant group has been established to look at those very issues. One of the other issues that the sub-group will look at is that which was raised by Christine Grahame and Irene Oldfather: how certain groups of vulnerable adults—Irene Oldfather used the example of people with dementia—can be enabled to express a view.
Richard Simpson talked about the capacity issues, which are also very important. The extra resources that I have talked about today will support the increase in capacity. Increased donation rates will mean extra work for retrieval teams and co-ordinators and more demand for intensive therapy unit beds and theatre resources. Planning the necessary resources will be one of the key roles of the donation committees and the clinical donation champions.
Richard Simpson asked about what he described as the disincentive to boards of organ donation. He should be aware that the system of reimbursement has never been discontinued in Scotland. The amount has now been raised to £2,500 to cover costs to hospitals when donation takes place. I hope that that addresses the point.
Richard Simpson, Angela Constance and Christine Grahame raised the issue of allowing objections to be included on the organ donation register. NHS Blood and Transplant is considering that issue as part of the implementation of the recommendations. Angela Constance suggested a variation on the idea—that people can register for or against organ donation. I have no objection in
Mary Scanlon raised the issue of the ability of people in island areas to donate. One of the things that we are expecting the donation committees that are set up in mainland boards to do is link with island boards to deal with some of the issues that Mary Scanlon raised. I would be more than happy to keep her updated on the progress on that. She got to the heart of the matter when she pointed to the need not just to increase the number on the register, which is a point that Mike Rumbles explored too. We already have the highest percentage of people of any part of the United Kingdom on the organ donor register, yet we have the lowest rate of organ donation.
The real challenge is to encourage people to sign up to the register and to ensure that that is translated into an increase in organ donor rates. That is why infrastructure, capacity, co-ordination and retrieval are all important. It is also why the issue that was raised by Ross Finnie, Christine Grahame and others about the Human Tissue (Scotland) Act 2006 is important. At its heart, that act says that the wishes that people express during their lives should be respected after their death—but that has not always happened in practice.
I am not comfortable with the suggestion that relatives should be shut out of donation decisions, but we have a job of work to do in raising awareness of the current state of the law and its intention and in encouraging relatives to give effect to the wishes of those who expressed them during their lives.
I will not comment on Ian McKee's suggestion about his body parts being used for fertiliser, but he made an important point about building consensus. I will return to the importance of consensus in a moment.
Michael Matheson spoke about the need for culture change. Today, we are talking about the hard things that we are doing in infrastructure terms to increase the donation rate, but we should not lose sight of the fact that this is about changing culture and mindsets—about encouraging everybody to see donation as the usual, not the unusual, event. That is extremely important.
Michael Matheson and Richard Simpson talked about an issue that is behind the Labour amendment. I believe that we
I will conclude by reflecting on what everybody has agreed during the debate. None of us wants people to wait longer than necessary for organs. None of us wants people to die unnecessarily on the waiting lists for organs. The question is how we go about raising the donation rate. I am glad that the debate has focused so much on that. Everybody knows that I am sympathetic to a shift to an opt-out system, but on an issue as important as this we must move forward with as much consensus as we can manage.
I have never been of the view that opt-out is a magic solution: we know from the experience in Spain that even if we moved to an opt-out system tomorrow we would still have to do all the other things that the task force recommends. Therefore, my considered view is that we should—as the task force recommends—give ourselves time to do all the other things for a period, without the inevitable controversy that a shift to opt-out would involve. Whatever side of the debate people were on, such a shift would be controversial and run the risk of distracting us from the focus that we need on those other matters.
I ask members to support the motion. It does not tie Parliament's hands, but it focuses Parliament clearly on an important job of work that is absolutely in the interests of every person in this country.